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"Learn to Ask: Patient-Generated Health Data, Artificial Intelligence, and the Synthesis of Care"
Abstract
"Healthcare is both an intersubjective experience and an increasingly automated system for making meaningful decisions on the basis of captured data. Two evolutionary tendencies in healthcare technology indicate a trend towards drawing these disparate characteristics into closer alignment, first: the arc initiated more than forty years ago by the shift from paper to electronic health records (EHR), which continues apace with the introduction of artificial intelligence (AI); and second: the use of patient-reported outcome measures (PROMs) as instruments for subjective, embodied, and context-rich measurement of patient experience. While the consequences of this convergence have only begun to be studied from a clinical standpoint, this dissertation seeks to understand the cultural and social ramifications of computational approaches to understanding patient experience, by placing large scale data analytics into a shared context with the medical humanities and disability studies. To this end, three separate approaches are interleaved: First, an exploration of the possibilities for analysis as a precursor to imagination, centered on the use of patient-generated health data and AI. Second, a narrative review of technical and scientific literature that addresses how PROMs and AI may be used together. The aim of this review is to collect the various narratives that produce, and are produced by, this convergence. In sum, these narratives are seen to constitute a sociotechnical imaginary, or collective sense of what is possible. The third method applies creative techniques—poetry, lyric essay, and image-making—to highlight the need for artifacts to understand and navigate intersubjective experience of both illness and technology."
Keywords:
"Medical Humanities, Disability Studies, Critical AI Studies, Patient-Reported Outcomes, Medical Technology: Social and Cultural Effects"
Introduction
Overview:
I am most struck by studies that show people survive more when they fill out surveys about how they are feeling.
"A visit to the clinic is filled with pointed questions, asked of the patient by no one in particular—a portal, a prompt, automated and oriented by compliance. Questions about status, satisfaction, sadness, and work; about getting out of bed, lifting heavy objects, and how much of our social life has been interrupted. Some questions seem to recognize the specificity of our experience, while others seem wholly misdirected. What pattern could capture us completely?"
"In my effort to explain the sensations of having a bodymind inside of automated systems of capture, I will refer to experiences which you, reader, may not share. This is ok: these gaps between us—intervals—are the basis for my efforts, where shared experience resides as allegory, recognition, and room to learn."
There are three main axes for this dissertation:
1. Analysis and Imagination
2. Artificial Intelligence (AI) and Patient-Generated Health Data (PGHD)
3. Informed Consent and Shared Decision Making
"Each of these axes represents a possible assemblage, or synthesis, of different approaches to care. Analysis is a precondition for imagination: what we learn, combined with what we know, helps us to confront what we think of as possible. The integration of automated analysis and prediction (AI) with first-person testimony (PGHD) is enthusiastically promoted as a means of easing the burden of disease by better understanding a patient’s experience in context. At the same time, this integration carries enormous risk if not implemented ethically, and with respect for the whole patient. As a cautionary example at the center of this integration, informed consent practices fail to keep pace with changes in both technology and moral imagination. Attuned to compliance requirements, these practices are insensitive to patient needs. This failure motivates an embrace of shared decision making as an ethical approach to building trust and comprehension. However, both of these models are supported by a set of assumptions about autonomy and dependence that continue to shape what is possible in terms of law, technology, and imagination."
Aim:
"This dissertation seeks to locate possibilities for incorporating patients’ points of view into systematized models of care, particularly those premised on the use of predictive analytics, automation, and artificial intelligence. This process of incorporation, or synthesis, is held up as a model for producing better representations of, and insight into, the experience and effects of illness, with the overall goal of improving patient experience."
"The research as it is presented here is intended to be plainly legible to a general audience. In particular, it is written for those who have, as a patient or caregiver contending with serious illness or disability, become entangled with medicalized technologies. It is presented with an interdisciplinary curiosity and experimental spirit, in the hope of opening numerous points of entry to the concepts which it explores."
"It is further hoped that the questions addressed here will resonate closely with those whose expertise in patient-centered medicine—clinicians, researchers, patient advocates and policy makers—has led to similar lines of inquiry."
Outline:
"There are three analysis sections, each takes a different path. There are two creative texts (“Self-Writing” and “Sentences about rivers and cancers”). There are many illustrations. There is a glossary. There is an exhibition text (“There is almost not an interval”)."
Analysis 1: Analysis Helps Us to Imagine Better
* Format: Critical analysis
"* Methodologies: post-qualitative, non-representational, context-rich"
* Research questions:
* What are the possibilities for using analysis to assist with imagination? How do we define these terms?
"* How do the shapes of analysis, and representation, restrict what can be imagined or expressed?"
Analysis 2: The validated instruments
* Format: narrative review
* Subject: The integration of artificial intelligence and patient-reported outcome measures
* Research questions:
* What would an integration of artificial intelligence and patient-reported outcome measure (AI-PROM) do?
"* What questions are researchers pursuing this integration asking, to know they are on a good path?"
Self-Writing
"* Format: lyric essay, illness narrative"
* Thesis: Life-writing is a way to address excess signification and the limits of representational systems
Sentences About Rivers and Cancers
"* Format: poetry that arises from research practice, generative visual artwork"
"* Thesis: by assembling a shared imaginary between rivers and cancers, bodies and environment, illness and landscape, we can consider the ecological and the personal together."
Analysis 3: From Informed Consent to Shared Decision Making
* Format: critical analysis
* Research question:
"* Given that one hope for the integration of AI and PROMs is that it will provide patient-centered decision support, what are the underlying assumptions about autonomy and dependence that define how decisions are made?"
* What can a comparison of informed consent and shared decision making teach us about emergent forms of relational autonomy and expertise?
There is almost not an interval
* Format: exhibition notes
"* Thesis: An exhibition presents a novel and expansive way of approaching the research areas covered in this dissertation. In learning from artists whose work resonates with and problematizes the dissertation’s themes, rigid investigative frameworks are exchanged for loose coherence and multiplicity, with the hope of generating new lines of inquiry."
* This short text contains a discussion of the exhibition theme of “intervals” in the context of this dissertation. Some context and description for artworks in the program is included.
Glossary
"* A glossary of terms is included as a guide to the specific genealogies for the terms used throughout, as many have traveled across specialized disciplines."
Discussion:
"This dissertation identifies the role of synthesis in patient-centered care as an active integration of multiple subjective views and mixed-method analyses, instruments, documents, records, artifacts and interactions. Synthesis, as I have used the term here, is a complement to analysis, where each gives rise to the other. The synthesis of care, practiced as shared analyses and decision-making, is a co-creative act that centers consent."
"Working with the synthetic methodology of research-oriented artistic practice (what is also called research-creation),  the lines of inquiry opened here are intended to sustain an expansive understanding of how health-related data becomes insight, how it is reasoned and acted on, and how participation figures in the process. Throughout this study, imagination is a fundamental undercurrent: as sociological imagination—the capacity to link individual experience with broader social processes—and as cultural imaginaries—the collective capacity to imagine, expansively and speculatively, what could be otherwise."
Central to this study are:
"* The analytical frameworks of feminist science and technology studies, in particular those that illuminate the work of maintaining categorical boundaries, such as Karen Barad, Donna Haraway, Susan Leigh Star, and Adele E. Clarke."
"* Critical investigations of AI infrastructures, computational logics, and machinic perception, as represented in the work of Beatriz Fazi, Nora N. Khan, and Meredith Whittaker, among others: computational representation of embodied, social experience and attendant techniques for analysis and resynthesis."
"* The work of scholars and activists engaging with disability studies and crip theory, particularly the work of Mia Mingus, Alison Kafer, Robert McRuer, and Eli Clare. provide critical tools for examining the myriad ways that intersubjective experience of living with non-normative bodyminds are produced, represented and mediated—in terms of time, duration, sequence, environment, behavior, cognition, imagination, analysis, and so on."
* Life-writing as a core qualitative methodology for practices of narrative medicine and medical anthropology.
* The role of patient experience and patient advocacy in the development of PROMs as medical instruments.
"Patient-Reported Outcomes Measures (PROMs), as defined by the Food and Drug Administration, capture timely aspects of a patient’s experience of illness that come directly from the patient, prior to any interpretation of the patient’s response by a clinician or anyone else."
"They comprise active forms of patient-generated health data (PGHD), along with unstructured text from clinical interviews or communication between patients and providers, along with insights collected passively from fitness trackers and personal devices."
"PROMs offer an object of analysis that exemplifies broader shifts in the methods—and meaning—of health records as they are acquired, aggregated, accessed, and interpreted."
"These shifts are acutely evident in the ways patients, caregivers, clinicians, insurers and researchers come together around shared constructions of illness, disability, and quality of life."
"Decades of systematic digitization and categorization of patient data, along with the emergence of standardized application programming interfaces (API’s), have facilitated a system-wide tilt towards so-called “value-based care,” in which health insurers seek to correlate costs with holistic, “patient-centered” health outcomes."
"This correlation, along with decision support for clinicians and patients alike, is facilitated by the advent of large-scale artificial intelligence (AI) models pre-trained for adaptability to novel tasks involving language and reasoning, fine-tuned to draw insights from PROM data."
"My research, from a critical disability studies standpoint, considers the theoretical implications of using AI as a mediating layer for a patient's embodied experience, as it is captured in health records. Additionally, I place emphasis on the way PROMs are put to use in a clinical setting to assist with decision making and patient-provider communication."
"At every step, this dissertation considers PROMs to be media objects for analysis, as mechanisms for mediating experience that inevitably produce their own imprint on social and cultural life, as literacies, behavioral patterns, anticipations, desires, and biases."
"Finally, this dissertation is committed to the effective use of speculative, creative work for putting critique into practice, by finding points of convergence across research disciplines, and refining too-broad questions through attention to specific artifacts of experience."
Analysis helps us to imagine better
"Researchers provide an adult chimpanzee with four sheets of paper. Three of the sheets have regular shapes printed on them (counterclockwise from the top right: dots forming a disc inscribed in a triangle, dots forming two concentric triangles, dots forming a small square cross). The fourth sheet, at bottom right, is blank. The chimpanzee, equipped with chalk, immediately adds markings to the paper in what appears to be a coherent response to the printed shapes (e.g. filling them in, echoing or extending their pattern). For the blank sheet, they add different kinds of controlled marks to the top edge, corners and central area of the sheet, reinforcing the rectangle of the page."
"What follows is a statement about the shapes analysis may take, and how interacting with these shapes might provide the conditions for better imagination. Along the way, it is a critique of methods that rely on stability and optimization: fixing things. Facts, and points of view, are always situated but they move and change and contradict because they are also animated. This movement and change is sometimes narrative and it is sometimes playful."
Latent images
I want to begin by describing the pleasure of receiving a diagnosis.
"I am standing by the entrance of a big-box home improvement store looking at large metal enclosures. Boxes. The ear, nose and throat doctor who, a few days before, had used a hollow needle to take a sample from a lump on my neck, is on the phone. He describes the particular type of cancerous tumor the cells from the sample had been classified as, and recommends that I visit an oncologist as soon as possible to discuss next steps. At this moment, I am not deteriorating, moving from healthy to sick: I am getting information about lymphoma and how to live with it. I am pausing for a moment."
"“For those with the privileges of food, care, and physical support,” Mel Y. Chen writes, this pause becomes “a meditation (if forced) on the conditions that underlie both illness and wellness, that is, the biopoliticized animacies that foretell what may become of a changing body, human or not, living or nonliving.”"
"Predictions of impairment, or changed quality of life, are always already there, latent forms to be actualized as a consequence of becoming recognizable to myself and others. Who are these others? And what is becoming recognizable?"
I will start with the second question:
"I am reading Hannah Arendt looking for how she talks about life. Human life, she writes, can be considered apart from biological life in the way it unfolds through speech and action, “the two activities whose end result will always be a story with enough coherence to be told, no matter how accidental or haphazard the single events and their causation may appear to be.” Biography, as the record of vital facts, is not important. What is important is how we become recognizable to one another, through mediated processes of mutual disclosure, and the evidence these processes leave, their hopeful coherence."
"Arendt begins the “Action” section of The Human Condition with a quote, in Latin, from Dante’s Monarchia:"
"“Nam in omni actione principaliter intenditur ab agente, sive necessitate nature sive voluntarie agat, propriam similitudinem explicare. Unde fit quod omne agens, in quantum huiusmodi, delectatur; quia, cum omne quod est appetat suum esse, ac in agendo agentis esse quodammodo amplietur, sequitur de necessitate delectatio  Nichil igitur agit nisi tale existens quale patiens fieri debet.”"
Here I give my own loose translation (with delight):
"In every action, the first intention of the person acting, whether out of necessity or by choice, is to be recognizable [to make their own image legible]. Everything that acts, as an actor, finds delight in being active; since everything that exists desires its own existence, and in acting this existence is somehow intensified, delight necessarily follows. Nothing acts unless—by acting—it makes its latent self easily understandable."
"Dante pre-echoes my point, that it is essential (delightful) to put inner experience into the world, to be exposed to diagnosis, to make oneself understood. In fact, he writes, it is the only reason for acting."
"The closing sentence of Dante’s text, resistant to a singular translation, as Arendt acknowledges in a footnote, is one piece of a larger story that explains our need for a “space of appearance,” that is, an active forum of subjective co-creation, where our ‘latent selves’ come out—not a place where objects are made, but a space for making (and maintaining) ourselves and our relations:"
"“Without a space of appearance and without trusting in action and speech as a mode of being together, neither the reality of one's self, of one's own identity, nor the reality of the surrounding world can be established beyond doubt. The human sense of reality demands that [humans] actualize the sheer passive givenness of their being, not in order to change it but in order to make articulate and call into full existence what otherwise they would have to suffer passively anyhow.”"
"I read Dante’s early-14th century text about sovereign identity, and Arendt’s mid-20th century continuation of the thought, in terms of very contemporary crises of representation: how do we now establish identity and reality beyond doubt? How do we make latent selves easily understandable?"
"The focal point of this dissertation sits at the intersection of patient-reported outcome measures (PROMs) and artificial intelligence (AI). I have selected this intersection because it seems to indicate an inflection point in how testimony (speaking or authenticating oneself), and analysis (extracting features and patterns to produce representations) will either reinforce or cancel each other."
"While the consequences of this are far-reaching, I will concentrate here on applications to patient-centered healthcare. I will take many walks outside to clear my head and enjoy the surroundings, following a peripatetic method characterized by Rosi Braidotti as the figuration of a nomadic subject, “a politically informed account of  alternative subjectivity.  A style of thinking, occasionally autobiographical, which may at times strike the readers as  stream-of-consciousness.”"
"Rough answers to the preceding questions (the crises of representation) may be found in patient-reported outcome measures as validated instruments, tools by which inner experience becomes empirical evidence, with minimal mediation. For AI, the questions may be considered together with the mechanics of latent space, compressed representations that provide insight into how data are related, their patterns and features, implicit or explicit."
The explanation of life seems to be its melody
Before the Dante quote and just after the chapter heading (“Action”) Arendt put a brief epigraph from the Danish author Isak Dinesen:
All sorrows can be borne if you put them into a story or tell a story about them.
In part because I want to know what “all sorrows” means exactly I trace the source of this quotation to a 1957 New York TImes interview where I find Dinesen continues:
"To me, the explanation of life seems to be its melody, its pattern. And I feel in life such an infinite, truly inconceivable fantasy."
"Melody is not a metaphor, it is a guide. “All melody is a series of attitudes,” Suzanne Langer wrote, fifteen years before Dinesen’s interview took place."
"Thoughts and emotions are not represented by melody, but are carried along, in what Langer names “a connotative relationship between music and subjective experience, a certain similarity of logical form.” One is not the model of the other, there is no possibility of direct translation. And yet the sensation is there, to be analyzed."
"The fundamental relationships that give melodies their dynamic form are tension and release, suspension and resolution. As a pattern in time, melody works through contrasts, shades, and movements between differing events."
"If the mechanics of melody are rooted in difference, it is “a non-binary conception of difference” that is “‘not opposed to sameness, nor synonymous with separateness’,” in Karen Barad’s formulation, quoting Trinh T. Minh-Ha. This melodic, non-binary conception of difference should be remembered as one possible shape of analysis."
"Who are the others that this analysis makes me recognizable to? What separates us, and what joins us together?"
We share time.
"Experiences of illness, and the transformations they entail, “suggest a suspension of time (productivity time, social time),” Mel Y. Chen offers, in their study of animacy as a linguistic frame. “‘Living through illness’” Chen continues, seems to “confound the narrativized, temporalized imaginary of ‘one’s human life,’ for it can constitute an undesired stopping point that is sporadically animated by frenzied attempts (to the extent one’s energy permits) to resolve the abrupt transformations of illness that often feel in some way ‘against life.’”"
"Chen’s description travels well with notions of crip time, where, “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” A notion elaborated on by Allison Kafer, Margaret Price, Ellen Samuels, and others, crip time is characterized by non-linearity, flexibility, attentiveness, mourning, and interiority. Crip time draws from and extends rich traditions of radically re-framing normative temporalities and futurities, particularly those of Queer studies scholars like Jack Halberstam and Lee Edelman."
We share an environment.
"Subject to the porous interchange between environmental factors (toxicity, pollution, contamination) and social concepts of illness, disability, and debility—what Chen calls the “interabsorption of animate and inanimate bodies”—environmentally-linked health outcomes trouble the “binary of ‘life’ and ‘nonlife’” while offering a different way “to conceive of relationality and intersubjective exchange.”"
"This troubling is a necessary aspect of the stories we tell, and carries the power to dispel notions taking shape in both human-centered views of ecology and medicalized views of bodily and mental health. To resist and repair the effects of shared injustices that “reshape and damage all kinds of bodies—plant and animal, organic and inorganic, nonhuman and human,” as Eli Clare’s study of parallels between environmental restoration and medical narratives of disability shows, “perceived notions of normal and natural must be critically examined.”"
We share a community of practice and action.
"As patient advocates, the AIDS movement fundamentally transformed how clinical research works, establishing patients first-hand knowledge of the effects of disease as “an alternative basis of expertise.” Steven Epstein’s excellent history of this transformation, Impure Science: AIDS, Activism, and the Politics of Knowledge details in depth how “activist participation has done nothing less than change the ground rules for the social construction of belief—the varied processes by which different groups and institutions in society come to believe that a given treatment  is ‘promising’ or ‘disappointing,’ ‘effective’ or ‘junk.’"
"Social studies of patient advocacy, from AIDS to Long Covid, show how understanding of illness moves “from patients, through various media, to formal clinical and policy channels.”"
"Where incoherent, inconclusive, or conflicting data may forestall clinical interpretation, knowledge built from the ground up brings coherence to evidence and advocacy, and brings individual patients into community."
"What narrative studies that place clinical research, drug development, and patient advocacy side by side show is the common practice of emplotment: assembling facts into a narrative structure so that patterns appear to cohere, context falls into place, and illness becomes meaningful."
"Susan Griffin, in What Her Body Thought, recounts her own experience with Chronic Fatigue Syndrome in dialogue with the historical narrative of Marie Duplessis, who died of Tuberculosis forty years before its etiology was known. By drawing a parallel between the two conditions, poorly understood in terms of biological mechanisms in their respective historical moments, Griffin reveals the underlying, non-medical aspects of disease, bringing the social contract that governs illness and health into relief, in which “economy is an extension of the body.”"
"For those whose collection of symptoms lack the coherence of disease that is expected by the medical community, sociopolitical factors are laid wonderfully bare. As Griffin writes, illness exposes “not just the whirling surface of disparate destinies, but the rootedness of our connections. How the wound of being allowed to suffer points to our need to meet one another at the deepest level  the giving and taking that will weave a more spacious fabric of existence, communitas, community.”"
"Wendy Chun, writing about the assembling of narrative in the wake of traumatic events, shows that disentangling self and other, past and present, is a non-trivial problem: “Testimony is both an enabling and disabling violence. The intertwining of experience that trauma demands means that testifying is not enough: we must also respond and listen to others’ testimony so that the self does not take the place of the other.” We must preserve and articulate difference. This is where the work of making categories begins."
"I find resonance between Trinh T. Minh-Ha’s interrogation of difference as a constructive factor of identity, and the fullness of Arendt’s concept of action. Continuing, in context, from where Barad quotes Minh-Ha:"
"“Difference as foreground in my film work is not opposed to sameness, nor synonymous with separateness. Difference, in other words, does not necessarily give rise to separatism. There are differences as well as similarities within the concept of difference. One can further say that difference is not what makes conflicts. It is beyond and alongside conflict.  Many of us still hold on to the concept of difference not as a tool of creativity to question multiple forms of repression and dominance, but as a tool of segregation.”"
"For Arendt, action is the setting of things into motion. It is the push or pull that begins the process by which difference is put to use as an instrument of creative inquiry. Through action, per Arendt, we keep good relations: we forgive, we make commitments, promises. We build—not in the sense of craft or architecture—we build trust: continuities and stabilities. Action shows the plurality, uniqueness, and interdependence of human life."
"To be the subject of analysis is in itself an action, a consenting-to. To throw analysis back, invoking opacity, as in Glissant’s use of the term, is similarly active. Opacity is strategic, re-routing analysis, reaffirming boundaries and limits."
"If there is a split between being an agential actor, or being the passive object of life events—I cause things to happen, or things happen to me—it is not a separating binary. As a case-in-point, consider the figure of Spect-Actors in Brazilian theater director, organizer, and civil servant Augusto Boal’s Theater of the Oppressed:"
"“The stage is a representation of the reality, a fiction. But the Spect-Actor is not fictional. [They] exist in the scene and outside of it, in a dual reality. By taking possession of the stage in the fiction of the theatre [they] act: not just in the fiction, but also in [their] social reality. By transforming fiction, [they are] transformed into [themselves].”"
"Another non-separating binary: internal and external experience, implicit and explicit expressions of interiority. Constructs, in the psychometric use of the term: how we make sense of internal worlds, how we hold one person’s interior experience alongside that of others."
"Anamnesis, a term with roots in Platonic dialogues, is a telling of one’s innate knowledge. It can be thought of as the prior knowledge we bring to new situations. In medicine, it refers specifically to a patient’s account of their health history, in their own words."
"Anamnesis, another moment of diagnosis and pleasure:"
"In the spring of 1996 I had seizures, a feeling like being wrapped in sweetness, like spun sugar covering my eyes, nose, and mouth. An ocean of sound, and falling."
"In early summer a tumor the size of a lima bean was removed from my brain. A low-grade tumor made of both structural (glial) and functional (neuronal) cells, a ganglioglioma."
"In late summer of that same year the Health Insurance Portability and Accountability Act, known as HIPAA, became law. While HIPAA is now viewed almost exclusively through the lens of compliance with data protection standards, the law’s initial provisions were aimed at expanding access to healthcare and insurance, setting rules for how the insured move between providers in an open market. For me, this was personal, as a person with a ‘preexisting condition’ (an invention of the US insurance industry), HIPAA now offered some measure of protection against being refused coverage outright, as if I were a woodland cabin in fire season."
You take your data with you. What container do you use?
"“The natural, proper, fitting shape” of the narrative my data makes may be a melody, or “that of a sack, a bag. A book holds words. Words hold things. They bear meanings.” Ursula K. LeGuin, in her “Carrier Bag Theory of Fiction,” makes a powerful argument for gathering and holding as the right metaphors to use when telling stories about stories: “holding things in a particular, powerful relation to one another and to us.”"
The Shape of Capture
"The title of this chapter, Analysis Helps us to Imagine Better, can be broken down (deconstructed) into a sequence of problems: What is analysis? How should ideas of helping be framed? Who takes part in the collective us, who is kept out, and how? What are imaginations, or imaginaries? How do we know better from worse?"
"I live in a house covered by vines (Vitis girdiana, or “Desert Wild Grape” and Passiflora edulis or “Passion Fruit”). I have become familiar with the image of vines gripping the mesh of a screen window, exploratory tendrils taking hold and pulling the grid into warped patterns with the slow force of vegetal growth. I am also familiar with the image of these exploratory tendrils, seen through a screen window, reaching and bobbing tenuously away from the window into open air, where the thin line of the vine appears to break into jagged steps as it crosses behind the screen’s gridded mesh. This image of one pattern (the grid) failing to capture a second pattern (the bobbing vine), is a common visual distortion known as aliasing, and is a well-known problem of many systems of representation: where there is capture, there will be loss. I’m not sure, however, what to call the other image—that of the vines slowly pulling the screen into something less like a grid, more like a warped and bubbly mess. Nature? Arendt wrote that only humans think of growth and decay, nature is just ongoing."
"I imagine an image… that shows the visual distortion that happens when I see a vine through the mesh of a screen window. I try to describe the influence of one part of an image on another: a screen’s grid breaking up the continuous curve of a vine. Image description: A grid of nine black and white images, each depicting a variation on the theme of a grid interrupted and warped by a wild vine. Various scales and degrees of aesthetic realism are represented."
"I’ve seen it before, but I can’t quite hold an image of it in my mind, let alone create a good representation of it: I am looking out through the mesh grid of a screen window, and I see the smooth tendrils of a vine appear to break into a jagged stepped pattern. Is it a problem of needing to be in motion when viewing the scene? or of being able to focus on two planes at once? There’s something phenomenological here, something about what makes experience and action possible. It’s also simply a problem of sampling, an optical effect named aliasing: the grid of the screen forces a lower resolution onto the curve of the vine. When it reaches my eye it has the shape of a city walk: block by block."
"Ian White, artist, performer, critic, died of lymphoma in October 2013. This detail is significant to me because I have / have had the same disease, and because of the vague block I still experience trying to understand how people die from it. I’ve researched it, I still can’t process it."
"Ian wrote about performance, about action and time, and about cancer. On more than one occasion, he wrote about Robert Smithson’s allegorical treatment of entropy and irreversibility as a child running circles in a box of white and black sand particles:"
"A “sand box divided in half with black sand on one side and white sand on the other. We take a child and have him run hundreds of times clockwise in the box until the sand gets mixed and begins to turn grey; after that we have him run anti-clockwise, but the result will not be a restoration of the original division but a greater degree of greyness.”"
"To solve this, to prevent this process by which “all systems spiral degeneratively into sameness,” we need to move closer, to get that the grains, as individual quanta, are still black and white: “the analogy only holds for as long as we occupy a fixed position of inviolable, immaterial perception. ‘Greyness’ is the impression of colour from a fixed perspective.”"
"A shift in perspective, getting really close to what you’re studying is one option, the other is becoming alien to the conditions that bring you into contact with it, moving to different grounds. Sylvia Wynter identifies this place as demonic ground, outside of prior, subjugating categories, “a frame of reference which parallels the ‘demonic models’ posited by physicists who seek to conceive of a vantage point outside the space-time orientation of the humuncular observer  outside the ‘consolidated field’ of our present mode of being/feeling/knowing, as well as of the multiple discourses, their regulatory systems of meaning and interpretative ‘readings.’"
"I’m puzzling over what Ian characterizes as the double negative of cancer treatment: “something to do, being done.” I get that even in the distress of treatment, in the topos of cancer-filled life, just doing a thing, or saying a word, carries the benefits of self-efficacy, adherence to a routine, and other cascades of self-healing. There are other significant effects to this though, where action produces knowledge and recognition. This, ideally, is what filling out a form does."
"Taking on the phenomenology of language, Maurice Merleau-Ponty obsesses on the boundary between thought and speech, and finds ability as the catalyst: “My spoken words surprise me  and teach me my thoughts. Organized signs have their immanent meaning, which does not arise from the ‘I think’ but from the ‘I am able to.’ I slide this thought next to political / relational theories of disability, such as those advanced by Alison Kafer and others, in which disability and ability mutually define each other through social and ideological patterns. Conventions of what ability and disability mean arrive even before thought."
"The number of times Ian wrote: “What do I know.”"
"He knew that institutions—museums, for instance—subtract time from objects, preserving them indefinitely in reverent stillness. That is to say, they subtract life. Analysis can, and often does take this approach. Alternatively, respecting its objects’ animacy, analysis may include their movement in its model, or reanimate them."
"If objects that ordinarily are removed from time can have time introduced to them (again) for their own erasure, and this is political, so might the opposite be: a thrown voice or subjects subjected to something like architecture, a split.”"
"This ‘something like a split,’ like the split between subject and object, is where analysis takes place, a site elaborated on by so many scholars: by Karen Barad in their term ‘agential cut,’ by Donna Haraway as ‘partial knowledges,’ Fred Moten as ‘in the break,’ or Christina Sharpe as ‘wake,’ to name a few of the theories that I have carried with me." 
"Lauren Berlant also died of cancer, a different type: leiomyosarcoma. Her version of a split was opening up to the inconvenience of attachment and dependency, where “to queer something doesn’t mean just to stick an antinormative needle into it, but to open up a vein to unpredicted and nonsovereign infusions.”"
"The other face of analysis is synthesis: the generative and unfixed process of assembling or bringing elements together in a mixture; a composition. Concurrently and iteratively with breaking things down through analysis, “meaning and value emerg in the synthesis of the experience’s subjective and objective aspects,” what you see and what you know, in Vivian Sobchack’s model of embodiment and cinema."
"Synthesis, as I am using it here, follows Karen Barad’s call for diffractive, rather than reflexive, analysis of tools, one premised on working the entanglements of categories, frames, subjects, and objects."
"Two-dimensional plate harmonic series as visualized by acoustician Ernst Chladni. Image description: A grid of squares appear hand-drawn in thin white lines on a black background. Thin white line drawings divide each square into a unique pattern, from a simple cross shape in the top left corner, each square appears progressively more complex when moving across the grid, introducing curves, diamonds, star shapes and looping figures."
"A hand pulls a violin bow across the edge of a square metal plate to produce an audible tone. As the hand applies increased pressure and varies the angle at which the bow meets the metal, the tone jumps from a low fundamental, through a series of higher-pitched harmonic tones. Grains of fine sand bristle and migrate haphazardly as each new tone resonates across the surface, snapping into quick formations along the nodes of a two-dimensional standing wave. Visual patterns form precisely in those areas where vibration is at a standstill, even as the rest of the metal quivers freely."
"If you watch the movement of material like fine sand on a Chladni plate you know the uncanny twitching between harmonic patterns as one steady state transitions into another."
"I provide this example, and the ones that follow throughout this chapter, to think with as examples of movement constrained by models—abstract representations that try to capture what is meaningful about a thing. Moving between an original and its model, or even between an image and its description, shows the shape of capture: what is preserved as meaningful, and what is discarded."
"More specifically, these models are manifolds, constrained, continuous spaces that hold representations so we can understand their patterns better. Latent space, in the context of AI models, is a manifold, flattening complex worlds into an apprehendable space. Think of constellations in the night sky: the depth of time and space flattened into figures, nodes and edges telling us our stories."
"Constraints can be: spectral (an auto-tuned voice striding on intervals), spatial (as tiles arranged to fill a space), temporal (playing with waves crashing at the shoreline), semantic (a rose is a rose is a rose)."
"Speaking generally, the constraints of a manifold produce a movement like resonance, or a habit: following the contours of a latent space, guiding expressions along the rails of features and relations. Whatever you do, the end result will always be a story with enough coherence to be told."
"Sampling across the latent space of a learned representation of handwritten digits to illustrate how “human concepts as thickness, orientation, and digit-specific traits vary smoothly between samples, signaling the latent space effectively captures factors of variation in the data.” Image description: A grid of handwritten white numbers (digits) centered on a black background. Reading across, down, or diagonally through the grid, the digits slowly change, such that each location of the grid shows a digit that is distinctly recognizable as a particular number (6, 4, 2, 0, etc), but bears increasing resemblance to some number further along in that direction."
"The Visual Analog Scale (VAS) measures aspects of subjective pain experience (intensity, affective quality) by placing a mark along a linear, continuous line. Image description: a thin horizontal white line stretches across most of the image, against a black background. Each end of the line terminates in a square. Above the squares are text labels—on the left: “No Pain” and on the right: “Worst Pain Imaginable”"
"Categories divide a continuous space into its harmonics, its areas of motion and its areas of stillness. They guide action into recognizable gestures."
"Wong-Baker FACES® Pain Rating Scale. Image description: A horizontal row of five line-drawn cartoon faces. On the far left, the face appears to be smiling. Moving from left to right the faces appear to express progressively worsening moods. The centermost faces appear more neutral, with a flat line for a mouth, neither smiling nor frowning. The face on the far right appears to be weeping, with a sharply downturned mouth and furrowed brow." 
"The Wong-Baker FACES Pain Rating Scale, designed for patients to select the face that best expresses the intensity of their pain, appears at first to flatten the complexity of subjective pain experience. As a momentary assessment, it doesn’t capture continuity: changes, memories, and anticipations that contribute to what is felt in the instant of questioning. It doesn’t distinguish between the overlapping and inter-relating physical sensations that produce the wholeness of pain, nor does it separate social, psychological, and biological factors. It is only recently that research has shown that the faces are not in fact measuring a fear of questions. However, as an instrument created in cooperation with children, for children, the faces are a model of how to design analytical tools that are accessible and adaptable, with patient needs at the center."  
"The McGill Pain Questionnaire (1975). Image description: a printed page with a prompt in large, underlined, bold type at the top right: “What Does Your Pain Feel Like?” Instructions are below the prompt, in a block of smaller text centered horizontally on the page: “Some of the words below describe your present pain. Circle ONLY those words that best describe it. Leave out any category that is not suitable. Use only a single word in each appropriate category—the one that applies best.” Descriptive categories are arranged in a grid that fills up most of the page: “1. Flickering / Quivering / Pulsing / Throbbing / Beating / Pounding 2. Jumping / Flashing / Shooting 3. Pricking / Boring / Drilling / Stabbing / Lancinating 4. Sharp / Cutting / Lacerating 5. Pinching / Gnawing / Cramping / Crushing 6. Tugging Pulling Wrenching 7. Hot / Burning / Scalding / Searing 8. Tingling / Itchy / Smarting / Stinging 9. Dull / Sore / Hurting / Aching /   Heavy 10. Tender / Taut / Rasping / Splitting 11. Tiring / Exhausting  12. Sickening / Suffocating 13. Fearful / Frightful / Terrifying 14.  Punishing / Gruelling / Cruel / Vicious / Killing 15. Wretched / Blinding 16. Annoying / Troublesome / Miserable / Intense / Unbearable 17. Spreading / Radiating / Penetrating / Piercing 18. Tight / Numb / Drawing / Squeezing / Tearing 19. Cool / Cold / Freezing 20. Nagging / Nauseating / Agonizing / Dreadful / Torturing”"
"The McGill Pain Questionnaire (1975). Image description: a printed page with a prompt in large, underlined, bold type at the top right: “How Does Your Pain Change With Time?” Instructions are below in a smaller type, centered horizontally on the page: “Which word or words would you use to describe the pattern of your pain? Descriptive categories are arranged in a row below, centered horizontally on the page. “1. Continuous / Steady / Constant 2. Rhythmic / Periodic / Intermittent 3. Brief / Momentary / Transient”"
"The McGIll Pain Questionnaire (MPQ), validated in the 1970’s as an instrument for the self-reporting of subject pain experience, establishes linguistic categories of sensation, affect, and evaluation in order to better understand patterns in both the intensity and the qualities of pain over time. The McGill Pain Questionnaire, and its short-form version (SF-MPQ) are widely used in research and clinical medicine fifty years after it was first made available. Recent reviews of the research using artificial intelligence for pain tend to focus on the same problems of classifying, rather than specifically diagnosing or managing pain."
"Language is changing, local, and variable. For us to be legible to one another, we try to move in the shape of a shared language, adapting to shared settings and needs, but this is not always possible or desirable. Description is a kind of translation that cuts across local variations in language to make an object or experience accessible in a different way. Like speaking poetically about an artwork, description should preserve interpretability (making a latent image understandable), even as it troubles notions of objectivity."
"I type out each word on the questionnaire in the image descriptions above, to assist screen readers in deciphering the images, to put a finer point on the limited accessibility of text-based surveys, and as a kind of litany: considering each word in turn, I compare the meaning it activates in my mind with what I recognize about myself in that moment. I wait for a pattern to click into place."
"This questionnaire does not rely on accuracy or precision in a biological or linguistic sense. As it is not a diagnostic tool, the meaning of words, physical sensations, and affects are all permitted to flicker. It accomplishes a more important task as an instrument for communicating, from patient to provider, whether or not a treatment or intervention is meaningful to them:"
"“Some of these words are undoubtedly synonyms, others seem to be synonymous but vary in intensity, while many provide subtle differences or nuances (despite their similarities) that may be of importance to a patient who is trying desperately to communicate to a physician.” [italics mine]"
"No continuous space is without these pockets of suspension, and no division of continuous space into a harmonic series fully captures the anxiety of hovering outside of, or along the edge of a category."
"A flowering focus on a distinct infinity"
"“Form does not necessarily achieve closure, nor does raw materiality provide openness,” the poet Lyn Hejinian writes. It is through the construction of ‘open’ forms (approaches to making and writing that aim to preserve multiplicity in their experience and interpretation, for example) that the specificity of concrete, material, life is made accessible, as “a flowering focus on a distinct infinity.”"
"“Is there something about the world that demands openness?” Hejinian prompts us: “Is there something in language that compels and implements the rejection of closure?”"  
"Maybe a rhetorical question, but there are reflexive critiques to be made. There is something in language that rejects closure, but who’s language is this? “Settler colonial knowledge is premised on frontiers” and “the felt entitlement to transgress these limits,” Eve Tuck and K. Wayne Yang spell out in R-Words, Refusing Research."
"Placing a critical frame around the pursuit of sensitive knowledge from vulnerable populations, Tuck and Yang interrogate damage-centered narratives as a primary axiom of social science research, where “the subaltern can speak, but is only invited to speak her/our pain” The authors turn to bell hooks, who animates the power gradient that threatens to bind researcher and subject: “No need to hear your voice when I can talk about you better than you can speak about yourself. No need to hear your voice. Only tell me about your pain. I want to know your story. And then I will tell it back to you in a new way. Tell it back to you in such a way that it has become mine, my own. Re-writing you I write myself anew.”"
"In mathematics, incommensurable refers to two quantities that don’t share a common measure or standard. They can’t be expressed as a ratio, they can’t be compared. A wild example that sticks in my mind: hope is incommensurable with reality."
"The knowledge and expertise we derive from our specific experiences can be thought of as, at times, incommensurable with that of others. Don’t even try to explain. When speaking across gradients of power and vulnerability, such as between patients and providers, it is important to acknowledge how incommensurability affects our capacity for mutual recognition. My oncologist warned: I cannot tell you what cancer treatment is like because I haven’t tried it myself."
"Open worlds are good, as are recognizing limits. This is the paradox, I’ll name it fatigue—not just of the body but of action and speech, of making one’s latent self understandable."
"Assumptions about research that forget fatigue eventually hit hard limits. Shaped by setting, duration, resources, language, our lived experience, the tools and actions available to us, the amount of energy and attention we have in reserve, any question can be unanswerable, any decision can be undecidable."
"This is as true for very abstract, general problems as it is for very concrete problems, including those indicated by material, mechanical, or social relations, what a body can do, or what one person is comfortable disclosing about themselves to another: A survey doesn’t produce insight if the subjects are too exhausted or alienated to answer questions right now."
"There are limits to the kinds of problems computation is good at solving, as there are limits as to how to use computation ethically. And then there are limits to what kinds of problems can be computed at all."
"There are uncountable ways a question can be unanswerable. In studies of computation, these often break down into problems where we can’t say for sure whether a program will ever stop (the halting problem), and problems where we can’t decide whether a statement is true or false (the entscheidungsproblem, or decision problem)."
"Particular unanswerable (or unknowable, or uncomputable) questions exemplify situations that we may be able to feel our way through as experiences (from up close or far away) but—encountering the limitations just mentioned—cannot know exactly. We can’t model it or interpret it. It’s beyond us."
"I’m thinking, for example, about an example of uncomputability known as the domino problem, illustrated using patterned or shaped tiles. The question is: given any random set of tiles, can they be made to fit together, matching edge to edge with no gaps, to fill any random space? The answer to this can be ‘yes’ or ‘no’ as long as every set of tiles eventually conforms to a repeating pattern. Yes: the pattern made by these tiles repeats perfectly to fit the limits of the space. No: these tiles won’t fit that room, their pattern is too big."
"In this problem, things become uncomputable when we get that there are in fact some kinds of tiles that can fill an infinite space without ever making a pattern that repeats: aperiodic tiles. Since the answer to the domino question for these specific tiles is neither yes nor no, the domino question is shown to be uncomputable. The existence of these shapes breaks the computability of the problem."
"I think there is something mystical embedded in these shapes, a power to break questions. I trace them, feeling how their edges force decisions about how to fit or place or rotate into patterns."
"Two versions of a type of shape that only makes non-repeating (aperiodic) patterns when tiled, not requiring reflective translations (flipping). Because its tilings have no reflections, researchers have named it spectre. This is the only type of shape known to have this aperiodic quality. Image description: Two similar but distinctly different shapes, consisting of a number of curved edges and sharp vertices, drawn as white outlines on a black background."
"The two versions of the spectre shape, superimposed to show their shared underlying form. Both shapes have the same arrangement of nodes, while each has its own variation of an S-curve forming the edges. I look at the previous figure, and then back, going back and forth between considering the shapes as unique, and of a shared type. Image description: superimposition of the two shapes from the previous figure, with opacity adjusted so the differences are evident. Each node aligns exactly, while the curved edges are inverted, producing a squiggly, roughly circular double helix, like a necklace or a protein."
"Two ‘supertiles’ in which spectre shapes are placed into a tiled pattern. The only actions needed to make a non-repeating pattern are to rotate and slide the shapes up and down, or side to side, then place them edge to edge with one-another. Arranging these tiles by hand helps me to understand that there are still principles in place that guide what I do and how it feels to do it. Not a constraint so much as the sensations of ease or resistance. This can feel like fitting pieces together in a puzzle."
"This is not the only way to distinguish between computable and uncomputable versions of this particular question. New conditions change the outcome: Are we permitted to know in advance where and how the first tile will be placed? Are we permitted to not only rotate and shift, but reflect, warp, or scale the tiles as we arrange them? How many different shapes or patterns does the set of tiles contain?"
"With these modifications, a wider variety of shapes can produce non-repeating patterns. When there are less available actions, the possibility of a set of shapes that can produce non-repeating patterns vanishes, and the question becomes computable again."
"Another, urgent way of approaching the question of computability: can all patterns be predicted?"
"Computational approaches to prediction embed a conditional logic in the questions at hand: act, if a condition is met, with the requirement to be specific, legible, and exact. Uncertainty and immeasurability belong to another domain."
"This is political. Diagram of a two-dimensional classifier that has learned a boundary between classes. Image description: an array of gray dots on a black background are crossed by a thin white line running diagonally from bottom left to bottom right. Some dots fall above the line, others under. Still others are touched by the line itself."
"Patient-reported outcomes (PROs), as subjective reports of interior experience, produce categories with fuzzy boundaries which require ongoing maintenance work, if interpretation is to be meaningful."
"The work of manipulating evidence through categories and interpretations to become meaning faces a number of challenges and critiques. Traditionally, research has approached this work with the aid of models, whether rational systems placed between observer and the object of study, as with traditional statistics, or emerging through analysis, as with AI and machine learning techniques."
"To address the lived experiences, interactions, and affective dimensions that may not be easily captured by traditional forms of representation, disparate contemporary research disciplines, spanning philosophy, art, performance, and social science have taken issue with model-based, representation-driven approaches to meaning-making. Bundled together as non-representational, post-qualitative, or more-than-representational these research methodologies share the position that the work of research is not just to hold a mirror to an external reality, but to engage with the complexities and multiplicities of human-environment interactions, embodied experiences, and the relational nature of knowledge production: “how material, sensory and affective processes combine with conscious thought and agency in the making of everyday life.”"
"In this focus on assemblage and movement, non-representational research challenges stable identities, hierarchies, and boundaries, even patterns, emphasizing instead the fluidity, contingency, and relationality of social and material phenomena: everything animated and in motion, plural, changing. Departing from notions of biography, non-representational theory looks at practices, or “material bodies of work or styles that have gained enough stability over time  to reproduce themselves.”"
"“The language of action is  the language of nonsymbolic signs in the present tense; but in the present it makes no sense, or if it does, it does so only subjectively, in an incomplete, uncertain, mysterious way,” Pier Paolo Passolini wrote in “Notes on the Long Take.” Passolini continues, in one of the most deeply-cutting explications of cinema that I know of: “While living we lack meaning, and the language of our lives (with which we express ourselves and to which we attribute the greatest importance) is untranslatable: a chaos of possibilities, a search for relations among discontinuous meanings.”"
"If continuity and coherence are not intrinsic features of the original data, they are fantasized into the fabric of the model. The shape that this imperative towards coherence makes, out of thin air, is the vibe of the original. I’m drawing from Peli Grietzer’s mathematically-informed literary “Theory of Vibe,” here, and through his work, that of affect theorist Sianne Ngai., Grietzer’s theory understands variational autoencoders, a technique central to many generative AI systems, to be effective in modeling the vibe, or essence, of experiences and objects. From this, he proposes that the features learned by an autoencoder in producing this representation may, in turn, serve as a generative framework for interpretation, allowing for nuanced understanding of cultural artifacts through their discernable tone, texture, underlying structure, and ideology."
"Media are tools for thinking with. Overlapping with language, media offer compressed representations of reality made to be shared over the low bandwidth of our capacity for shared experience. We use media to access what is outside of our own perceptual or cognitive boundaries—to think unthinkable thoughts."
"By switching channels between media—tactile, visual, sensory, symbolic, lexical, interactive—we build multimodal associations, extended techniques, to learn more about the texture of reality. More on this in a moment."
"To understand latent space it’s necessary to get the underlying principle of dimensionality reduction. Hold a folded piece of paper in your hand between a light source and a blank wall. Note how the dimensionality of the fold, and your hand, are legible as a two-dimensional shadow. Consider all that this allows: to trace the shadow with a line on the wall, to rotate or re-fold the paper to see all the ways the shadow changes, to learn about shadows and light sources and walls…"
"A latent space is a manifold for holding the reduced dimensional representation of a more complicated reality."
"Image description: A black and white image of a hand holding a folded piece of paper. Both the hand and the paper appear to cast a shadow against a wall, and somehow they are both already shadows on the wall. What is intended as an illustration of how three-dimensional forms—the hand, the folded piece of paper—are legible in lower dimensional space (the 2D space of the shadow’s appearance on the flat wall), instead illustrates the particular glitch of a poorly represented separation between dimensions."
"Leaving evidence."
"Image description: A thermal shadow left by a handprint, captured with a black and white infrared camera. The shape of hand’s palm is visible across most of the frame, with soft gradients from light in the center to dark along the fingers. The rest of the frame appears to have a grainy texture, with a few ambiguous shadows or indentations distributed around."
The Rhythmic Work of Interpretation
"“Organisms-that-person agitate in the mix, but always in a withness of environment: a becoming ecology of practices.”"
"“Your body? It consists in a bundle of rhythms.”"
"Any continuous signal depends on oscillation—repetition and circularity—to give the appearance of stability, of persistence."
"Barthes: “Without rhythm, no language is possible: the sign is based on an oscillation, that of the marked and the non-marked.”"
"The rhythmic event works as a basis not only for symbolic language, but for anything that patterns."
Analyze time like a drum.
Recognition needs repetition.
"“Does taking comfort qualify as life? Only if it flickers.”"
"The rhythmic event brings life, duration and ecologies together as the object of a particular form of analysis, what Henri Lefebvre called rhythmanalysis: “Everywhere where there is interaction between a place, a time, and an expenditure of energy, there is rhythm.”"
"Extending the metaphor of rhythmanalysis, everywhere where there is interaction between prior knowledge and anticipation, there is a frame that guides our senses. Suzanne Langer describes it like this: “Familiarity is nothing but the quality of fitting very neatly into the form of a previous experience. I believe our ingrained habit  of seeing things and not sense-data, rests on the fact that we promptly and unconsciously abstract a form from each sensory experience, and use this form to conceive the experience as a whole, as a ‘thing’."
"“The experience of rhythm” in Eleni Ikoniadou’s auditory-focused reading of Langer’s process philosophy, “cannot be rendered discursively; it is indescribable and, moreover, nonsubjective—since it belongs to the act itself."
"Ikoniadou uses Langer’s concept of rhythm to show “that aesthetic forms are not static but are assemblages of tension, accumulating continually without reaching an end or resolution (like ‘the breaking of the waves in a steady surf’). Langer’s treatment of the notion brings it forth ‘as a relation between tensions rather than as a matter of equal divisions of time (i.e. meter),’ showing us that ‘there is no dividing line between two events’. Considered rhythmically, there is no distance between two or more events; instead there is only the ‘building up of potential’ swelling the gap between them and turning it into resonance.”"
"Langer describes the opportunity afforded by non-discursive (e.g. resonant, or as the interchange of intensities between subjects and objects—affective) forms of analysis, in which sensing is the action of creating worlds: “The world that actually meets our senses is not a world of things, about which we are invited to discover facts as soon as we have codified the necessary logical language to do so; the world of pure sensation is so complex, so fluid and full, that sheer sensitivity to stimuli would only encounter what William James has called (in characteristic phrase) “a blooming, buzzing confusion.”"
"Language helps to make sense of the world, but affective attunement at the level of mechanistic pattern recognition is key: “Out of this bedlam our sense-organs must select certain predominant forms, if they are to make a report of things and not of mere dissolving sensa. The eye and ear must have their logic—their “categories of understanding, if you like.”"
"Logically, this process is not one of translation, but of interpretation between incommensurable realities. The imaginary, as the force of listening, doesn’t engage in representation, it only holds shape like a river carrying flood waters after a storm: “The imaginary comments with a dirge, or it just giggles.”"
Recognition needs repetition.
"“Think of your day as a continuous series of scenes or episodes in a film.”"
"The Day Reconstruction Method, a survey instrument for self-reported quality of life, compares satisfaction with affect by soliciting not only momentary appraisal, but the reconstruction of remembered affective states, as anecdotes. Patterns, habits, and complex internal attitudes emerge from this simple test. Asking subjects to divide their memory into repeated segments and consider them retrospectively, like scenes in a film, the questionnaire is shown to be both easier to fill out, and easier to interpret."
"Importantly, we are not simulating the experience of illness, pain, or disability—we are recognizing these experiences as patterns. Repeatedly asking for, listening to, remembering and responding to subjective accounts of experience (testimonies) builds mutual trust, recognition, and shared imagination, or sense of what’s possible."
"Imagination, in an overly literal sense, is the work of making and reading images. In practice, this means mental images in any modality, not just visual (holding a word, sound, place, gesture, plan, system in mind)."
"Sociologist Ruha Benjamin situates imagination between individual and collective thinking, as “the capacity to link individuals’ personal problems with broader social processes.”"
"Where imagination invokes the communal, interpretation holds the subjective center. Interpretation is biased work, like reading, critiquing, curating, assembling, learning how patterns and relations come together to make a unity."
"Consider another passage by Ian White, a sharp-tongued deflection of interpretations that conflate the meaning of his work (staged performances, paintings, films) with the meaning of his person (his identity, his biological data, his testimony, explanation, or intention):"
"“…if I am speaking it is not to ask you to witness my feelings or what I am pretending to feel, which is nothing anyway. Here are no confessions. It is because the thing said is to be there, thrown from me, not of me. ‘I’m not here’ cannot be spoken, stupid. But it is one way of describing agency. And desire. (I’m trapped.)”"
"I read it in circles, then ask an AI to explain it to me like i’m five (ELI5):"
"Imagine playing with a toy, and you decide to make it say something."
"When the toy speaks, it's not really about the toy or its feelings because, well, toys don't have feelings. This is like saying, “The toy isn't really talking; it's me making it talk for my story.”"
It's more about the story you are telling with the toy.
"In our pretend game, we can change how things normally are. We can make something that doesn't usually change, change."
"When we play with the toy differently, we make a new game. This can be a special way to share ideas."
What kind of learning?
"Philosopher of technology Beatrice Fazi outlines the shift in direction that everyday computational work has taken with regard to interpretation."
"“While much of computer programming has historically consisted in making human abstraction significant and operative within the instrumental remit of algorithmic machines, with deep learning we face the opposite case: the abstractions and consequent instructions the machine gives itself now require interpretation for them to be significant and operative for humans.”"
"Interpretation is a process that benefits from inquiry and interaction. To interpret an instrument, it helps to have access, to play, to act and react, to produce and observe effects, to assemble and test ad hoc models of how the instrument behaves."
"Explanation, on the other hand, is entirely abstracted from the instrument. Explanation is summary, modeling intent and sentiment, framing and reframing to support what are deemed likely as meaningful patterns. Contemporary AI excels at explanation, but fails at interpretability."
"Why this is concerning, particularly in terms of how AI may interact with patient-generated health data, is because it leads to loss of imagination, or to “imagination without insight,” as Audre Lorde has put it, detailing a crushing flaw in the promise of analysis."
"Automation of learning, but what kind of learning?"
"As I walk to campus today, cutting across the busy traffic of students moving out of campus housing, a self-driving car very politely stops to allow me to cross the street. Robots always work to do better. In cases where ‘better’ is poorly defined, or multiple versions of ‘better’ conflict with each other, whose lead should the robot follow? I am grateful for the autonomous vehicle’s deference to me, a pedestrian crossing in the middle of the block, but this may be a wrong way of framing the problem, in terms of leader and follower and the work of doing better."
"Social-Emotional Learning (SEL) is too often misinterpreted as a focus on individual skills, self-improvement and problem solving, instead of its intended push to reframe educational processes within “a more context-based, relational, and cultural-situational view of problems and their solutions.” Put another way, it’s not just about the students: teachers using an SEL framework come to understand themselves as emotionally and relationally connected to one another, to the students, and the wider community."
"Sociotechnical imaginaries, as detailed by Sheila Jasanoff, Sang-Hyun Kim and others, describe “collective visions of good and attainable futures  both as the ends of policy and as instruments of legitimation.” Sociotechnical describes specific entanglements of social and technological factors contributing to a given situation. Imaginaries, as social articulations of what is possible, are powerful, culture-specific resources. We can use the figuration of sociotechnical imaginaries to understand what is expected of a new technology, such as AI-integrated PROMs, in a given context, such as healthcare in the U.S."
"Who imagines? Does filling out a PROM produce a kind of defamiliarization for the patient? A “vertical perspective,” view from outside? What other perspectives are happening, and can they be mapped or diagrammed? For this exercise, I propose an assemblage: Sociotechnical-Emotional Learning."
"What did you imagine would happen if you filled out this form? What did you anticipate?"
Forms of Submission
"“The rhythmanalyst will not be obliged to jump from the inside to the outside of observed bodies; [they] should come to listen to them as a whole and unify them by taking [their] own rhythms as a reference.”"
"Every six months I return to the oncologist, who, after glancing at my lab results, performs a curious (to me) ritual of methodically tapping on my chest with the flat side of two fingers close together: thump thump, thump thump. First one spot and then another. Thump thump. Diagnosing by touch, and by listening, the oncologist puts the data back into my body."
"In “The Birth of the Clinic,” Michel Foucault wrote that clinical data originate from “the meeting point of the gestures of research and the sick organism”—they are actively solicited, assembled. The scale and location of this meeting point is variable: Instrumental mediation provides a “solidified distance” between clinician and the object of their study. A medical gaze is synthesized out of touch, sound, sight, and social order."
"“The stethoscope,” in the example Foucault provides, “is the measure of a prohibition transformed into disgust, and a material obstacle.” In locating the function of disgust, he is drawing from René Laënnec, the 19th century physician and musician, who first developed the stethoscope. Laënnec promoted his invention as an alternative to the practice of immediate auscultation, or the practice of listening by placing ears or hands directly on a patient’s body, which he characterized as “inconvenient for both doctor and patient; only disgust makes it more or less impracticable.”"
"Crip theorist Robert McRuer, in “Composing Bodies; or, De-Composition” details the uses of composition (as a creative and pedagogical act) to trouble the idea that “identity  emerges from disparate features that are supposed to be organized into a seamless and univocal whole.”"
"Invoking Donna Haraway’s notion of “permanently partial identities  living within limits and contradictions”  McRuer calls for a practice of critical de-composition: “re-orienting ourselves away from  compulsory ideals and onto the composing process and the composing bodies—the alternative, and multiple, corporealities—that continually ensure that things can turn out otherwise.”"
"Prompted to Simply ask a question by the AI agent, I pause to remember myself and what my questions consist of."
"I keep returning to my oncologist’s admonition to “not become a professional patient.” To engage with medical care beyond preventive and routine maintenance, to be a complicated problem, to hold multiple conditions, co-morbidities and confounding factors, requires professionalizing oneself as a patient—to become information, to perform legibility."
"Biological mediation, in Ebony Coletu’s formulation, “refers to any structured request for personal information that facilitates institutional decision-making about who gets what and why.”"
"The varieties of functional life writing, from job and school applications to requests for social support, scholarships, grants, and so on, entail a continual retelling and reshaping of one’s biography to match institutional patterns and categories of need."
"As “a recurring form of self-disclosure required when requesting assistance or cooperation to achieve life goals,” this kind of life writing “transform the ways we speak of opportunity,” as disabled, sick, poor, incarcerated, and any other marginalized people know deeply."
"For example: in the U.S., to be recognized as disabled requires the performance of belonging to a formal category. To receive assistance through public support requires—alongside the formal application process—the loss of privacy, the continuing review of resources and living circumstances, and adherence to a low material standard of living: “ceremonies of social degradation,” to use disability historian and activist Paul Longmore’s term. Each of these burdens serves only to maintain the legible authenticity of the applicant."
"What does legible mean in the context of patient-reported outcome measures? What are the consequences for a patient who returns PROMs that are incorrect or incomplete? What makes a good or responsible completion of a PROM survey? How are outliers folded back in to maintain meaningful patterns? What use is an ambiguous response?"
"Performance studies scholar José Esteban Muñoz’s use of the term disidentification, following the work of linguist Michel Pêcheux, is crucial for working with productive ambiguities:"
"Interrupted in the activities of daily living by a prompt—an interpellation—to fit a pattern, one can either adjust their behavior and presentation to match the pattern; or resist, continuously pushing back with a mirror pattern of their own."
"The third option is to disidentify, where the subject “neither opts to assimilate within such a structure nor strictly opposes it”"
"Instead, the encounter with dominant patterns becomes an enabling misreading, where a subject is able “to read oneself and one's own life narrative in a moment, object, or subject that is not culturally coded to ‘connect’”"
"Disidentification reframes contact between dominant patterns and subjects as something like a missed encounter: instead of forming either matching or mirroring patterns, we stay incommensurable."
"Dismediation, as proposed by Mara Mills and Jonathan Sterne, extends Muñoz’s usage of disidentification to understand the ways disability and media shape each other. The process of dismediation, as Mills and Sterne describe it, ​​takes “disability as method, not simply as content” for study. Instead of holding onto universal models of communication, dismediation “begins from a presumption of communicative and medial difference and variety.” Instead of using media as “the tools to repair a damaged or diminished condition of human communication,” Mills and Sterne advance a basis for “communication as something fraught, supplemented, and interdependent in all of its many forms.”"
"Dismediation, as an analytical process, begins with the premise that there is no ground truth, no world that is available to the senses without media, and that “every media form is built around different ideas of the natures of human subjects and bodies."
"What is relevant, what gets discarded? Why has this record of my life (health, experience) been edited in the way it has? Or, what model would I prefer to capture myself with?"
"Life writing, as the continuous interchange between what we carry with us (our prior knowledges, our hupomnemata: ‘notebooks’, as Foucault puts it), plus what we experience as new in the present moment, is a tangible way of feeling how representations are not static, but have their unique movements and flows."
"Social, cultural, and technological contexts each contribute to the evolution of what we model as natural language. While this suggests a continuous requirement for upgrade and improvement of natural language models, there is equal demand for better awareness of the factors that create these contexts, and the influence of feedback between the models and what they represent."
"This kind of inferential logic is called abduction—the tacking back and forth between futures, pasts and presents, between ideas and observations, as a way of building theories."
"Adele E. Clarke traces the genealogy of the term to pragmatist philosophy that embraced the potential of abductive inquiry—in contrast with inductive or deductive logics—to produce concepts out of deep awareness rooted in tangible evidence. As a form of educated guessing, abduction “is not solely intellectual or cognitive, but also experiential.”"
"For the foreseeable future, abduction, creative inquiry, and human-in-the-loop computational processes remain critical to the project of embedding patient-centered outcomes at the center of AI health tools."
"Good representations:"
"Analysis is the technique by which representations are made. What is a good, or necessary, representation?"
"Consider the current tools of generative AI: Transformers learn what is important and pay attention to it. Diffusers destroy structure, then learn how to iteratively restore it. Variational Autoencoders learn what is essential to make a compressed version of something, then reverse the process to learn how to make it whole again. Generative models use latent space to creatively explore complex things in a simpler and more meaningful form. Meaningfulness is in proportion to noise. A signal is meaningful when it carries more information than noise. Each of these tools, when used generatively to resynthesize from a learned representation, provides tangible evidence of what has been learned, what properties of the original data have been captured, and in the gaps: what properties have been lost."
"The goal of analysis is to produce generalizable insight into the original object, or data, being studied."
"Natural language processing, or how computers come to understand and use language as humans do, has driven what we think of as the capacity for AI to effectively communicate meaning. Multimodal AI, or the modeling of relationships between different representational modes—sound, image, timbre, texture, tone, vibe, scene, gesture—extends this capacity, tacitly acknowledging that concepts of natural language are inherently incomplete, that meaning is contextual, relational, and sensory."
"Can we speak in terms of the texture of illness? Of pain? The texture of neurodivergence, or a non-normative bodymind? Or even the texture of evaluative methods, such as patient-reported outcome measures? How might these textures be represented, or synthesized, so as to better understand them?"
"The task of distinguishing one texture from another, as an aspect of images, language, and of signals more generally, has long been a focus of AI and computer sensing."
"Image description: A black and white image containing eight unique textures tiled together as a mosaic. The image is designed as a test card to prepare computer vision applications to discern transitions between textures along non-horizontal and non-vertical boundaries. The accompanying map of texture regions is shown below."
"Do you see it? The textures are present in the image in approximately equal proportions. The upper-left portion contains three textures in an arrangement where two textures converge along curved paths against a background of the third texture. The upper-right portion of the mosaic contains regions with non-vertical and non-horizontal boundaries, both straight and slightly curved. The bottom half of the image is made up of the eight textures in irregularly shaped regions of approximately equal size."
"Texture—how a thing feels, the attributes of surface and structure as they appear in a consistent way to the senses—is modeled as transitions between local and global attributes, as territory (topos)."
"I will for a moment draw a parallel between instruments that measure (medical, scientific) and instruments that make (music, images)."
"To create, or modify the audible textures produced by a musical instrument, a musician may employ what are called extended techniques: Precisely coordinated movements and positioning of bodies, lips, tongue, breath, fingers, lungs, throat. Some extended techniques obscure the player’s physicality, masking or rerouting the sound’s perceived origins. Others draw added attention to the player’s physical presence, the shape and posture of their body, the grain of their voice, their various capacities and endurances."
"Extended technique suggests the extension of a world, making it more expansive in space, time, and imagination. At the same time, naming something as extended removes it from a set of otherwise standard or normal practices. This distinction is not self-evident: Instruments invite play, discovery is within their regular use, if not somehow against the grain of habit."
"Thought of as playing different or out of bounds brings extended technique into the shared metaphorical space with notions of (un)natural places and bodies that Eli Clare writes about. This is about pushing at the boundaries of a representation, the space of a manifold, not to erase the contours of constraint, but to soften them with practice, to make their shape more evident—more textured—and inclusive of variation."
"Classification, sorting things continuously into one or another category, needs good representations. Working towards better mathematical representations of a signal’s texture, researchers have formalized the requirements of a good representation."
A good representation should meet the following criteria:
"1. If the signal is translated, the representation should not change."
"2. If the signal is deformed, the representation should be deformed in a proportional way."
3. Signals that are different should be represented differently.
This can be learned.
"Unless we think of everything as a signal, the goodness, or necessity, of a representation depends on its purpose."
"As the purpose of representation moves from simulation to finding and explaining patterns in data—from discrimination (what number did you write?) to recognition (what patterns in your behavior define you?)—measures of goodness shift from interpretability, and the ability to recall with precision, to the accurate predictions, the capacity for reason and action."
"Before integrating AI and patient-reported outcome measures, consider what the core tasks of making representations will be, the different consequences of each task, and defining the task shapes how the tools are used: Are we extracting information from a noisy signal, or summarizing, making abstractions and translations? Generalizing from specifics, or fine-tuning a general model to meet local needs? What kinds of prediction will be made?"
"“The myth of prediction,” as outlined by writer and critic Nora N. Khan, forecloses imagination—it “shapes our sense of possibility to an extreme degree” through logics that orient us “in bounded, limited ways toward people, places, the possibilities of how our lives can unfold.”"
The goal of a representation is to make our own latent selves recognizable.
Meaningful Analysis
"In search of a working definition of analysis, I turn to Audre Lorde’s “Poetry is not a Luxury.” Poetry, she tells us, is a form of self-analysis, “the quality of light by which we scrutinize our lives.” Poetry, as analysis, is the latent space of what we can sense and know: “It is through poetry that we give name to those ideas which are, until the poem, nameless and formless-about to be birthed, but already felt.”"
"An example image from Christina Morgan and Henry Murray’s set of Thematic Apperception Test (TAT) cards (1935). What story does this picture tell? Image description: a vertical rectangle of white, to the left of center. Framed as a silhouette in this rectangle are the outline of an open window or door, and a partial human form, which occupies the entire bottom right side of the white frame, occluding the corner and continuous with the black background. There are no details or breaks in the image apart from the silhouette, rendering the entire image in only black and white, no shades of gray. The figure’s arm, outstretched horizontally, bisects the frame at roughly the vertical midpoint. The figure’s head, seen in profile facing to the left from the right side of the frame, tilts slightly up. At the bottom of the frame, an ambiguous shape interrupts the white rectangle, continuous with the silhouette of the figure."
"I see Lorde’s “quality of light” in the processes described by artist and writer hannah baer as intrasubjective restoration. In this frame, baer is drawing a comparison between generative AI and the psychoanalytic use of ‘projective’ tools: ambiguous forms, such as Rorschach inkblots, or indistinct narrative illustrations, like those included in the Thematic Apperception Test (TAT). These images are not particular—they don’t index anything in reality, and their meanings are not fixed. And yet they are recognizable through the affect responses they produce and the narratives they conjure. We relate to them."
"Projective instruments do not validate well: there is no demonstration that they consistently measure constructs as intended. However, they serve another purpose: by rerouting both the clinician and the patient’s attention through the image, they give us something to talk about. We can ask questions and fill in missing data."
"AI, as either the simulation or resynthesis of familiar patterns, can be a catalyst for generative misrecognition—a tool for defamiliarization (dépaysement) and disidentification. As processes of affective disentangling, we may (optimistically) use AI to apprehend gaps or biases in representation, filling in data from our own experience to understand the tools as non-innocent, and to disassociate from normative visions of selfhood."
"If, as baer asks, projective instruments such as Rorschach or TAT, “don’t contain particular images and instead just help us tell our own stories, is that also what we’re doing with the ambiguous figure of AI?”"
"Our engagement with the ambiguity of AI is not innocent or un-mediated: As Meredith Whittaker warns, the computational systems that produce these engagements are often private and pursuing the capture of attention, access, and control, “threading through our public life and institutions, concentrating industrial power, compounding marginalization, and quietly shaping access to resources and information.”"
"Where AI is applied as a mediating layer between individual persons and health infrastructures, it is all the more critical to direct our attention to how power works on and through each point of engagement. It is also imperative to push humanist sway onto emergent logistics of evaluation, optimization, and management—tilting towards what baer calls “a world where deep transformation—creating something that connects us more deeply to ourselves and one another, redrawing our self-image—is the tendency,” rather than reproduction of poorly fit and inequitable categories."
"Ensuring that person-centered and prosocial outcomes are at the heart of AI technologies, particularly in healthcare, requires specific and coordinated work. This is the work of advocacy, of design, and policy-making, but it is also the broad theoretical work of tending to categories, and critical methods such as what Adele E. Clarke “work is the link between the visible and the invisible.”"
"Considering the shift from actuarial analysis to predictive analysis and data-driven forecasting across science and industry, Clarke elaborates on anticipation as the synthesis of abduction, simplification, and hope."
"Abduction, discussed previously in this chapter, is the inferential task of tacking back and forth between emergent theories and observations. Simplification—editing, sorting, arranging, representing, abstracting and generalizing—includes all the tools and techniques for making something complex more manageable, including what Clarke, Leigh Star, and others in feminist science and technology studies have pointed to as deleting the work. Hope, finally, is the affective dimension of anticipation, a driving force, an outcome, and a commodity within anticipation work."
"The work of maintaining categories: The work that curtains do. Osmosis and diffusion. Voter district remapping. Breathwork. Border walls. HVAC systems. Difference without separation. Bodies without organs. Liminal categories. Lenticular logics. Single stream recycling. Immune response. Navigating personal boundaries. Compassion and intersubjectivity."
"Classification has consequences. What are the best practices for making and maintaining categories?"
"Center the interpretive flexibility that humans do well, with all the bias and richness context our positionalities bring to the process."
"Temper the flow of interpretation, thinking in terms of boundary objects, a concept laid out by Leigh Star to describe arrangements that allow different groups to work together without consensus. A map that guides different groups of people to experience the same site in different ways is one kind of boundary object. Many technologies are. A library, where people disagree about which books belong and which should be removed, is not one."
"“Often, boundary implies something like edge or periphery, as in the boundary of a state or a tumor. Here, however, it is used to mean a shared space, where exactly that sense of here and there are confounded.” These objects work because ownership is ambiguous but each group who takes part finds their information needs satisfied. Knowledge is always partial: no one knows everything, but everyone knows something. As objects holding the shared information needs of patients, providers, researchers, and caregivers alike, patient-reported outcome measures are an ideal example of boundary objects whose use is already navigated separately and together by each group."
Recommendations
"Take a walk together, as an alternative to explaining or making an argument."
"In her germinal text “The Rejection of Closure,” whose characterization of open forms is discussed above, Lyn Hejinian draws on Umberto Eco’s reasoning as to the ways author and reader come together to make meaning—a position outlined in his 1962 essay “The Open Work.” Speaking to the generative creativity both reader and writer bring in response to an open form, and the “polygendered impulses” it activates, Hejinian quotes Eco on what he called inferential walks, a peripatetic practice of reading and writing that resonates for me as an analytical technique. An inferential walk is a method for embedding intertextual ideas, their frames of reference, across worlds. As Eco puts it: “to identify these frames the reader has to ‘walk,’ so to speak, outside the text, in order to gather intertextual support (a quest for analogous ‘topoi,’ themes or motives).”"
"Topoi, the plural of topos, a group of ideas stretched out into space, a problem space, or a decision space. Importantly, the notion of taking a walk to engage with ideas, doesn’t need to be strictly metaphorical. I’m thinking of a dialogue between Judith Butler and the artist Sunaura Taylor, who uses a wheelchair because of a congenital physical disability. As the two stroll through San Francisco’s mission district, they turn to the subject of walking in the context of disability. Taylor offers: “I use that word [walking] even though I can't physically walk. I mean, to me, I think the experience of going for a walk is probably very similar to anybody else's: it's a clearing of the mind, it's enjoying whatever I'm walking past. And my body is very involved even though I'm physically not walking.” Butler invites in return: “Nobody takes a walk without there being a technique of walking. Nobody goes for a walk without something that supports that walk, something outside of ourselves.” Part of taking a walk is the everyday opportunity to “rethink what a walk is in terms of all the things that power our movement, all the conditions that support our mobility.” So, in walking we clear the mind, enjoy the surroundings, live in our bodies—while coming to understand how the environment (physical, technical, social, etc) supports, impedes, and redirects our passage."
"A central problem that walking gets at, for me, is the question of navigating territories—In terms of discipline, access, literacies, roles—the transversal cutting across and within boundaries of Rosi Braidotti’s nomadic subjectivity or Maria Lugones’ “world”-traveling."
"The medical humanities offers a number of approaches to the therapeutic exchange of perspectives, building and strengthening trust and recognition between patients, providers, and caregivers. Key to these approaches are engagement with ritual, performative and artistic forms that produce meaning in the link between internal and external experience, such as writing and creative making and role-play. I’m thinking in particular here about how the politically-engaged theater of Augusto Boal, and the recent innovations in conceptual, live-action role-play referred to as Nordic LARP might be applied in healthcare settings."
"In the following chapter, “The Validated Instrument,” I take up the question of what artificial intelligence (AI) technologies—including adjacent tools and techniques such as passive data collection, ubiquitous computing and computerized adaptive testing (CAT)—integrated with patient-reported outcome measures (PROMs) would do. Drawing exhaustively from recent scientific literature, I aim to trace the underlying narrative assumptions motivating research at the intersection of AI and PROMs, and to further trouble the foundational confusion set up by using both patients’ lived experience and automated pattern matching as key endpoints for research."
"The Validated Instruments: A Narrative Review"
Introduction
Background
"This chapter, with a broad view, seeks to understand the characteristic research narratives that bring artificial intelligence (AI) and patient-reported outcome measures (PROMs) into allignment. While this view encompasses a wide array of disciplines and settings, it finds a limited range of narratives. The ascendant prioritization of patient- and value-centered models of care, and the shifts in knowledge and culture these priorities endeavor to bring about, provide the motivations, inform the underlying assumptions, and shape the ethical and technical concerns that illuminate the path forward."
"There are, as of now, no holistic hybrids at this intersection, no full integration of artificial intelligence and patient-reported outcome measure has been validated. However, the literature shows many paths towards the integration of AI and PROMs, through iterative advances in methods, across diverse contexts, with barriers to overcome, and an increasingly coherent sense of what the benefits could be as well as what cautionary measures need to be in place."
Objective
Two primary questions motivate this narrative review:
1. What would an integration of artificial intelligence and patient-reported outcome measure (AI-PROM) do?
"2. What questions are researchers pursuing this integration asking, to know they are on a good path?"
Subject matter:
What are patient-reported outcome measures?
"Patient-reported outcomes (PROs) are timely records of a patient’s experience of illness—their inner thoughts, bodily sensations, and social experience. PROs are raw data coming directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. As such, PROs are one kind of patient-generated health data (PGHD)."
"A patient-reported outcome measure (PROM) is a standardized tool for capturing PROs: a survey, instrument, scale, or single-item measure used to assess particular PROs, such as symptoms, behaviors, or functional abilities, as perceived by the individual, obtained by directly asking the individual to self-report. PROMs serve as a means to assess patient-centered outcomes, guide clinical decision making, evaluate treatment effectiveness, and inform healthcare policy."
"PROMs vary in their specificity and adaptability. Types of PROM include generic instruments that can be applied across different health conditions or populations, and condition-specific measures designed to assess a particular aspect of a disease or condition."
"Examples of commonly used PROMs include PROMIS (Patient-Reported Outcomes Measurement Information System, a set of tools for measuring physical, mental, and social health, the generic EQ-5D and SF-36 surveys (used to measure general physical and mental wellbeing along with health-related quality of life (HRQoL)), or the condition-specific PRO-CTCAE (Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, used in Cancer treatment clinical trials to monitor treatment-related symptoms)."
"A specific category of PROM, the patient-experience measure (PREM), records patient perspectives on the quality of care, service, and treatments they receive, often in the form of a patient satisfaction survey. Together, PROMs and PREMs contribute to an understanding of the value of healthcare received by a patient over time."
"PROMs can be found as paper surveys, web-based tools, standalone apps on a phone or tablet, or as part of a hospital’s patient portal. The integration of PROMs with Electronic Health Records (EHRs) has become increasingly common, enabling healthcare providers to access and analyze PROM data alongside other clinical information, facilitating a more holistic view of patients' health status."
What is artificial intelligence?
"Artificial Intelligence (AI) is a widely used term to describe any tool or system that simulates, augments, or automates the way people make sense of the world. In the context of healthcare, AI encompasses a wide range of techniques, from image classification to predictive modeling, chat agents, decision support, and text analysis."
"In contrast with traditional statistical methods which begin by applying a priori models to understand the relationship between selected variables, researchers use AI to infer patterns from data and to give shape to models that represent both explicit and implicit features in the data."
"Natural Language Processing (NLP) is a set of techniques that automate understanding of what humans mean when they use language to express themselves to one another. Patients’ own descriptive language—how they express qualities of their experience to other people—is a source of ground truth for PROs. Because of this, NLP is at the center of many AI methods used with PROMs. While NLP makes use of both AI and non-AI tools, the focus of this review is on AI-based NLP approaches, where learning is automated, and understanding proceeds directly from raw text rather than a traditional statistical approach, where understanding is derived using rule-based systems."
Why are PROMs important?
"There is a limit to what objective measurements in healthcare can do. PROMs, as subjective, unmediated reports shared by patients, fill in the gaps that other methods cannot assess, such as “pain levels, patient experience, motivation, human factors,  and health priorities."
"* PROMs are patient-centered by design: they aim to measure the outcomes that are most meaningful to patients, and to make sure that patient experiences, symptoms, and quality of life are taken seriously in treatment decisions."
"* PROMs provide opportunities for open dialogue between healthcare providers and patients, promoting shared decision-making and better care coordination."
"* When implemented successfully, PROMs invite patients to become active participants in their healthcare journey rather than passive recipients of treatment. This can help build trust between patients and providers, especially among populations who have experienced mistrust or neglect from the healthcare system in the past."
"* Using PROMs can reduce healthcare costs by identifying early signs of disease progression or treatment failure, allowing for timely adjustments and early interventions."
"The literature covered in this review is not limited to studies using specifically identified PROM instruments. The scope is purposefully expansive in its inclusion of other forms of patient-generated health data (PGHD), such as unstructured data sourced from electronic health records, apps, fitness trackers and wearable devices, social media, and other settings. We use data both actively and passively to express ourselves, and to represent our experience. Research has shown that patient-reported outcomes can be inferred from unstructured clinical notes and social media using AI techniques such as natural language processing (NLP). It has also been suggested that passively collecting PGHD from apps and devices provides meaningful context and validation for PROMs while reducing the burden on patients that is often associated with actively completing PROM questionnaires. Moreover, the introduction of AI analytical methods has been indicated as opening the way for integrating diverse and unstructured PGHD with validated PROMs."
"PROMs, as media, are changing, interdependent objects. The instruments will change, and so will the tools and frameworks for validating them. This review seeks to identify the conditions of a possible future in which researchers and clinicians continually learn how best to listen to patients’ experiences."
Full-text analysis
"The widespread availability of large language models (LLM), with capacity for summarization and topic modeling that far exceeds earlier statistical approaches, has prompted interest in the (partial) automation of systematic literature reviews. It has been shown that automation using LLMs works best when applied to full-text analysis, a task well-served by a tendency to produce generalized variations and transformations of source data.  For the Results section of this review, AI analysis was used to synthesize a summary of the objectives, questions, ongoing concerns and imperatives related to the design of AI-PROMs, according to the available literature."
"Nomic AI’s GPT4All library was selected because of its stable and well-maintained open source codebase, its integration of multiple state-of-the-art large language models (LLMs) from different developers, its active community of contributors, and its straightforward integration with retrieval-augmented generation (RAG) techniques."
"Retrieval-augmented generation (RAG) is an AI technique that combines the natural language understanding and generative capacity of pre-trained large language models (LLMs) with the fidelity of a database query. Given a selection of material—texts, images, instructions, etc—a RAG tool learns embeddings, or relational representations of material fragments, which it then stores as a body of knowledge.  For the purposes of this review, embeddings were created from the total search results using the open source software tool Nomic Embed v1.5."
"Colloquially described as ‘chatting with the documents,’ Interacting with a RAG tool consists of selecting which documents to use as context, submitting prompts and receiving responses. While RAG tools respond reliably when questioned about the subject matter contained within the documents, the technique performs poorly when asked questions about the documents themselves—so-called metadata questions, such as comparing one paper to another, or characterizing patterns or distributions across the set of documents.  Prompts like  “select publications from the provided documents that investigate the integration of artificial intelligence and patient-generated health data” return a mixture of actual citations and plausible but non-existent (hallucinated) paper titles, authors, summaries, and digital object identifiers (DOIs). On the other hand, prompts like “provide a summary of the consequences of integrating PROMs with AI, in terms of patient experience, and in terms of sociotechnical effects” return a clear outline without errors or hallucinations, complete with a list of traceable citations from the provided context. At times, a RAG model will lose the scope of the whole context, and may focus on a small subset of papers. Hyperparameters, factors that adjust the model’s scope and variability with regard to its own internal parameters, can have an outsized effect on the quality, fidelity, and creativity of responses. In short, the experience of using a RAG tool for insight into a body of knowledge is less a factual exercise than a tactical one: iteration, synthesis, views of the landscape. Value is added, but actual reading for comprehension and comparison is not replaced."
"For the full-text analysis, two pre-trained large language models (LLMs) were used: “Nous Hermes 2 Mistral DPO,” a 7 billion parameter model trained by Mistral Al and fine tuned by Nous Research on the OpenHermes-2.5 dataset, and “Llama 3 Instruct,” an 8 billion parameter model trained by Meta. The text generated by each model was fact-checked, compared, and synthesized by hand. The Results section below draws in part from the generated results."
Discussion
Methodology
"A narrative review is a non-systematic methodology intended to address  “topics that require a meaningful synthesis of research evidence that may be complex or broad and that require detailed, nuanced description and interpretation.” To understand scientific literature as literature, a body of research may be productively examined with subjective, interpretive tools rooted in humanities and social science traditions such as constructivism—a research approach that seeks to understand the social, experiential, and interpersonal foundations of knowledge."
"Due to the emergent nature of the topic at hand, and the special case of AI as a sociotechnical assemblage, the perspective of this review aligns with theory-driven research traditions that seek to understand ongoing and messy interrelationships: between context and mechanism, between material artifacts, language, affect, and social factors.These traditions include material semiotics (or material-discursive analysis) and diffractive analysis, a method characterized by Karen Barad as one of “affirmative engagement,” rather than the “disclosure, exposure and demystification” of critique."
"To understand how AI and PROMs fit together—in the collision of generalized, automated pattern-matching with first-person testimony, mostly offered under duress—situated perspectives are required that take into account both the generic and the particular: how individual experiences collectively form patterns, and how those patterns create meaning for individual patients in return. When considering AI-PROMs’ incremental movement towards “that dream science/technology of perfect language, perfect communication,” as Donna Haraway writes, “Only the god trick is forbidden”—don’t make the mistake of escaping to a view from nowhere.  Our analysis must reconcile the roles that both generalization and personalization play in shaping one another."
Context:
"The relationship between AI and PROMs is a growing and potentially transformative field. At the center are AI technologies that aim to make sense of how humans express, reason, and exchange knowledge, such as NLP and large language models (LLMs). The recent acceleration of these AI technologies has seen the emergence of journals dedicated to the applications of AI in healthcare, such as NEJM AI and Artificial Intelligence in Medicine. For these journals, as well as the research under review here, the literature is addressed to a readership that spans disciplines within the medical field, hinting at the emergence of new hybrid practices that encompass informatics and healthcare services, while catering to a range of specializations such as oncology and orthopedics."
"In clinical trials of AI health technologies, PROMs are used as both input (data to learn from) and output (predictions made). Outcomes evaluated over time using PROMs, from postoperative depression to substance use disorder, are being studied as predictable patterns that can be addressed preventatively. While the use of PROMs in clinical trials of AI health technologies is increasing, the use of PROMs in the assessment of AI health technologies as a trial endpoint falls behind the rate of PROM use across all clinical trials.  Designers of AI health tools must maintain a broad understanding of how the tools impact patients’ quality of life. Integrating PROMs with AI health tools, whether functionally or as an assessment, helps to ensure that the patient perspective remains central to both clinical research and healthcare delivery."
Results:
"A narrative of continual learning and optimization, with patient-centered outcomes as the primary endpoint, runs throughout the literature as a hallmark of AI-PROMs. AI excels at identifying patterns and correlations between features, both implicit and explicit. Integrating the predictive pattern-matching aspects of AI with the patient-centered nature of PROMs may help to support personalized care and advance the goals of patient-centered medicine. For example, designing AI-supported surveys that can dynamically adapt to match individual patients’ needs and capacities, patients may become more engaged participants in their own care. In turn, more engaged patients may contribute actively to the collection of data about health status and interactions with healthcare systems, leading to more accurate, reliable, and culturally sensitive PROM instruments that better reflect patient experience."
Note: The indented content below has been hand-edited from AI-generated responses (refer to the Methods section above for details).
What an AI-PROM would do:
"Improve diagnostics and make more accurate measurements: AI presents the opportunity to contextualize PROs “with a large number of clinical, biological, and psychological data.”  AI algorithms using NLP can analyze text-based PROM responses, such as open-ended questions, to identify themes and patterns that may not be captured by traditional survey methods. AI algorithms can analyze vast amounts of medical data quickly and accurately, leading to earlier and more accurate diagnoses. This not only improves patient outcomes but also reduces the time spent in the diagnostic process, minimizing stress and discomfort for the patients."
"Assist in research and evaluation: PROMs are already used as an outcome in clinical trials to assess the effectiveness of treatments, interventions, and health services. AI-PROMs may extend this by contributing to the iterative improvement of PROM design. By analyzing response patterns, AI tools may be used to design PROMs that are more effective at capturing patients' experiences, while reducing the burden of lengthy questionnaires. Furthermore, AI-PROMs may help guide the design of clinical trials, identifying key patient-reported outcomes, predicting sample sizes required for statistical significance, optimizing study protocols, and analyzing results to determine whether interventions produce minimum clinically-important differences (MCID). Additionally, AI-PROMs can help identify areas for ongoing improvement in treatment quality by highlighting disparities and monitoring trends in PROs."
"Improve patient-provider communication: AI-PROMs may facilitate communication between healthcare providers and patients, showing clinicians a more comprehensive and context-rich representation of patient needs, providing cross-cultural and multilingual support, and assisting in timely input from providers on patients’ survey responses."
"Be available in real-time, all the time: A core value proposition of AI-PROMs is automation, in the form of fast, round-the-clock support from chat-based AI health assistants, symptom trackers, disease monitoring and management tools. Utilizing AI-PROM systems to attend to patients' symptoms, quality of life, and other health outcomes in real-time may enable more effective disease management, as well as improved patient outcomes and experience."
"Support shared decision-making: AI-PROMs may help guide the process of shared clinical decision making, providing actionable insights into patients' symptoms, quality of life, values, medical history, and treatment outcomes, while also making health information legible and accessible to patients in alignment with their needs and preferences,"
"Conduct data analysis: Collecting large-scale PROM datasets that are inclusive of diverse patient populations—from sources such as electronic health records (EHR) and patient registries (repositories of anonymized information related to specific populations or diseases)—will improve AI model performance and generalizability. Analysis by AI-PROMs may help to identify patterns and trends that may not be apparent through traditional statistical methods, such as identifying minimum clinically-important differences (MCID). AI analysis can be applied to a wide range of data, including extracting PROs from unstructured clinical narratives, as well as mapping the extracted PROs for phenotyping and clustering."
"Produce predictive models: By analyzing historical patient data, AI can predict potential health issues before they manifest or worsen. Early intervention based on these predictions can significantly improve patient experience by preventing complications and reducing the need for invasive treatments. Incorporating PRO data as an input for AI health models ensures that patients’ perspectives, not just clinical observations, inform the features from which the algorithm makes its predictions."
"Support personalized care: By integrating PROs into AI-driven decision support systems, healthcare providers can develop tailored treatment plans that better address patients' unique needs and preferences, as well as assist with patients’ health literacy and information needs. For instance, AI analysis may identify patterns that indicate the presence or impact of traumatic experiences on a patient's health outcomes. This information can then be used to inform healthcare providers about potential trauma-related issues and help them tailor care plans accordingly, incorporating trauma-informed practices."
"Support efficient resource allocation: AI can help optimize resource allocation in healthcare systems by predicting patient needs and allocating resources accordingly. This ensures that patients receive the appropriate level of care when they need it, reducing wait times and improving their overall experience."
"Reduce administrative burden: By automating administrative tasks such as appointment scheduling, billing, and record keeping, AI can free up time for healthcare professionals to focus on direct patient care. This not only enhances the quality of care but also improves the overall experience by reducing wait times and increasing face-to-face interaction with providers."
"Contribute to risk stratification: AI algorithms can identify high-risk patients based on various factors (e.g., medical history, lifestyle), enabling targeted interventions and improved patient experience."
Current barriers to widespread adoption of PROMs in clinical research that may be addressed with the integration of AI tools:
"Resource constraints: While collecting, analyzing, and interpreting traditional PROM data takes time and requires trained personnel, AI-PROMs may reduce administrative work by assisting healthcare workers with administrative tasks such as summarization and routine analysis."
"Limited specificity: Validated PROMs may not be widely available for certain conditions or populations. AI may help to speed up validation processes, as well as to supplement existing PROMs by extracting patient-reported outcomes (PROs) from unstructured text such as interviews and clinical notes."
"Cultural and linguistic barriers: To provide meaningful data, PROMs need to be culturally sensitive and translated into languages spoken by diverse patient populations. AI may help capture linguistic context and nuance across languages."
"Patient burden: Completing PROMs can be difficult and time-consuming, especially for people who are already experiencing fatigue and high cognitive load: “Questionnaires can be burdensome to complete, especially when multiple domains of patient health are assessed at the same time.”  Computerized adaptive testing (CAT) adjusts the survey instrument to simplify the test-taking process in the moment, matching patients’ capacity while preserving test validity.  Passive data collection—through devices and apps, for instance—is another low-impact source of patient-generated health data that can provide context for PROMs through data-driven analysis without contributing adversely to patient burden."
"Data quality concerns: Incomplete or inaccurate data collection can compromise the validity of results. AI methods for working with sparse data, filling in gaps, and generating synthetic or proxy data may help glean meaningful patterns, even from partial results."
Ongoing concerns that may inhibit adoption of AI-PROMs:
"Lack of standardization: While separate guidelines exist for the use of PROMs and AI in clinical trials (such as SPIRIT-PRO and SPIRIT-AI, respectively), standards for their integration remain to be developed. Furthermore, while individual PROMs undergo validation for how they measure different aspects of patient experience, there is no interchangeable standard for PROMs such as there is for other forms of health data, such as EHR. This makes it challenging to compare results across studies, and may contribute to a lack of clarity on actionable steps following assessments provided by PROMs."
"Entrenched behaviors in clinical settings: While integration of PROMs data implies a reorienting of clinical relationships to better align with patients’ subjective experience, in practice they often “function more as a tool to support patients in raising issues with clinicians than they do in substantially changing clinicians’ communication practices.”"
"Patient privacy and confidentiality concerns: Using electronic PROMs, as with the sharing of any sensitive  data, carries risks of exposure and theft."
"Concerns about the interpretability, explainability, and accuracy of AI algorithms, especially when making critical decisions affecting patient care. Difficulty understanding how AI decisions are made can lead to mistrust among patients, clinicians, or researchers."
What AI-PROMs must do:
"Be lightweight: Assessment processes should be streamlined or made adaptive, with fewer questions, more focus, more presence. If PROMs are to be further integrated into clinical workflows, they must reduce workload for patients and providers alike."
"Be responsive: make results, interpretations, and communication available to patients, caregivers and healthcare providers quickly. In addition to real-time availability, AI-PROMs must be adaptable and accessible."
"Be transparent: be able to explain or assist in interpretation of analyses and results. Offer clarity on what to do next, and assist in shared decision making. Focus on improving trust and equity, and acknowledge the limits of automated decision making."
"Advance healthcare equity: AI-PROM systems must account for social determinants of health and other factors affecting health disparities, promoting more equitable patient outcomes, and leading to more complete understanding of the burden of disease, in alignment with research goals."
"Involve patients: Patients' perspectives and experiences should be included throughout the process of developing and evaluating AI-PROMs, to ensure that AI health technologies align with their needs and values."
"Speak all languages: Learn from data in whatever form it comes in, with multimodal understanding. Combining PROMs with other types of health-related data (e.g., medical imaging, genomic data) may create more comprehensive AI models. Furthermore, learning relationships from a wide array of contexts and across languages—structured or unstructured text, voice audio, data from wearable devices and EHR, visual diagrams and graphic aids, social media, and so on.—may contribute to better accessibility and health literacy,  provide a more comprehensive understanding of patient experiences and outcomes in context, and a more intuitive grasp of what is meaningful to patients."
"The hopeful promise of integrating AI with PROMs is that tools which offer broad leaps in adaptability, pattern-matching, personalization, real-time responsiveness, and continuous learning will lead to better patient-provider communication, increased trust, and, for patients, a sense of ownership and motivation in managing one’s health. Taken together, these factors may contribute positively to a range of outcomes, including alleviating patient stress, better data collection and interpretation, and better-informed clinical decision-making."
"Fundamentally, AI-PROMs must extend the core principle of PROM instruments, that of validating patient experience. Care providers who use AI-PROMs should center patient concerns by acknowledging that their symptoms and health concerns are legitimate and worthy of attention, showing understanding and compassion for what they are going through, and confirming that their experiences are real and will not be dismissed or minimized."
"(Unanswered) Questions"
"A selection of (unanswered) questions, generalized from the literature:"
"* How can we tell if AI-PROMs are designed and implemented successfully?"
"* How can AI systems be designed to incorporate and analyze patient-reported outcome measures effectively?"
"* What types of PROMs would best suit the target population for a specific study or intervention, considering factors such as disease severity, age range, cultural background, etc.?"
"* Are there existing validated PROMs that can be used in the context of AI-based interventions, and how do we ensure their applicability to the given scenario?"
"* How can patients be engaged as partners in designing, testing, and implementing AI-based healthcare solutions that incorporate their experiences and perspectives?"
"* How has value-based healthcare influenced the development of AI in healthcare?"
"* What proxies are available—for experience? For expertise?"
"* What are the impacts of AI-PROMs on patient outcomes, satisfaction, and overall healthcare costs?"
"* How feasible and effective it is to integrate AI-PROMs into existing clinical workflows? To adjust treatment dynamically, based on patterns in patient-reported feedback?"
Conclusion:
"The current landscape for both AI and PROMs is characterized by increased adoption and efforts to increase standardization and interoperability. While challenges remain, the benefits of using AI and PROMs to improve patient outcomes and healthcare quality make them each an essential component of modern healthcare."
"The integration of AI with PROMs has shown promising results in enhancing healthcare services, improving patient outcomes, and optimizing treatment decisions."
"By applying AI tools to the analysis of PROMs, researchers gain a more holistic understanding of the complex relationships between diverse inputs (such as demographics, medical history, and treatment plans) and outputs (patient experiences and quality of life). This information may enable healthcare providers to make better-informed decisions that prioritize patients' individual needs and preferences. Additionally, using PROs as output from AI-based predictive tools may help to support interventions and treatment decisions aligned with desired health outcomes."
"Conversely, the use of AI algorithms that incorporate PROM data as an input ensures the inclusion of patients' perspectives in AI-based predictions. This persistent validation of patient experience may help to bridge gaps between patients and healthcare providers, facilitating more transparent communication about patient experiences and preferences. If more collaborative, intersubjective relationships between patients and providers is possible, then better-informed decision-making, improved trust in the healthcare system, and a more equitable distribution of resources may follow."
Suggestions for future work:
"Further review of the literature should contain an expanded bibliometric analysis: To what extent does the literature build on a shared research tradition, with shared assumptions? Are there divergent assumptions motivating the research? How collaborative is the research, between and within disciplines? How ‘common’ are the questions, objectives, and methods? Where is the research taking place—how geographically or institutionally diverse are the researchers?"
"Ethics: Continue evaluation of the ethical implications of using AI and PROMs together, with particular attention to the underlying ethical assumptions that ground issues around patient autonomy, privacy, data ownership, algorithmic transparency, and the potential exacerbation of health disparities due to biased algorithms."
"Safety: Develop guidelines and best practices for protecting patient privacy when using PROMs data as training data for AI models."
"Real-world implementation: Conduct pilot studies or small-scale implementations of AI-PROM systems in real-world clinical settings to evaluate feasibility, effectiveness, and scalability. A literature review that uses a realist synthesis methodology would provide guidance for implementing and evaluating the technologies in real-world settings. Realist here means somewhere between positivism (everything can be cleanly measured) and constructivism (everything is a sociotechnical construct). Synthesis means tracing lines of relation: unpacking the relationship between contexts, mechanisms, and outcomes. What works in one context may work differently in another. The context of the research includes which questions are asked, the way they are asked, and where the motivation for the research originates, for example, from within medical, engineering, social science, or administrative settings. The kind of medicine (e.g. oncology), the particular patient population, and the characteristics of the patient-generated data all contribute meaningfully to the overall research context. A realist synthesis approach is intended to produce secondary interpretations of primary evidence that “illuminate issues and understand contextual influences on whether, why and how interventions might work.” What are the contexts and settings where AI and PROMs work best together? What are the differences in how AI-PROM mechanisms work across contexts? What contextual factors may inhibit successful implementation of AI-PROMs?"
"Multidisciplinary collaboration: Foster collaborations between clinicians, researchers, data scientists, industry experts, and regulatory bodies to develop solutions for integrating PROMs with AI, and to build consensus around standardized protocols and guidelines."
"Standardization: Establish common standards for collecting, processing, and integrating PGHD with AI. Make use of existing secure standards for data interoperability such as FHIR.  Harmonize standards for access and ethical shared use of AI-PROMs across studies, countries, and fields of study. Support for innovative development of new AI-PROM tools must also facilitate open research, continuously improve the validity of results, and protect patients’ privacy."
"Apply AI-PROMs to new domains: AI-PROM systems may be particularly well-suited to address unmet needs in areas such as mental health, palliative care, and rare diseases. AI-PROMs may be used to assess the effectiveness of interventions or treatments that do not have established PROMs measures, as well as to expand the scope as to what kinds of outcomes can be measured and evaluated."
"For all references included in the search, one or more research areas was identified according to abstract, keywords, author biographies, and the publishing journal. These research areas show a diverse and intersecting range of fields, with a majority falling under the broad categories of applied science and technology (e.g. machine learning, computer science, etc), medicine (e.g. oncology, orthopedics, etc) and interdisciplinary (e.g. health informatics, medical informatics, health care sciences and services, etc.). Far fewer results fell within the broad categories of natural sciences (e.g. cell biology, chemistry) or social sciences (e.g. government and law, business and economics). The arts and humanities were not represented as a research area within the literature. Note that some references, interdisciplinary in scope, have been categorized as pertaining to multiple research areas."
Self-Writing
"This is my illness narrative. Imagining the kind of model I would like to be represented by, I turn away from what Ebony Coletu has characterized as functional life writing—applications, surveys, requests for assistance, etc—and towards a more open approach to writing about my own life, with an emphasis on associative and immersive descriptions of affect, experiences, and observations. Where functional life writing imposes an institutional requirement for coherence, this life writing, in the form of a lyric essay, attaches meaning to experience through poetic sense-making, for the writer and reader alike. Life writing, as a therapeutic process, is aimed at eliciting “an understanding of how both the physical and social environments” an individual engages with may “impact and influence health and wellbeing:” folding together thick description of everyday routines (the activities of daily living) with the careful disclosure of one’s interior attitudes and mental images, life-writing is a practice of subjective relation-making, and attunement to patterns."
"Image description: Illustration made consisting of fine white lines on a black background, converging into patterns that ambiguously resemble spider webs, or snowflakes, or something in between."
Quorum quantula pars sit imago dicere nemost
"[We cannot say what part of them is the image]"
"* Lucretius “De Rerum Natura” 4:174"
1
"I was dead. I have new feelings. I will describe them here."
"I am an analyst who specializes in feeling. My spectrum is deep. Experience has taught me to be circumspect when I assign types, cautious when I classify (emotions that are my own, shared, or belonging to others), to patiently delay drawing borders, and to attend to the maintenance of boundaries with care."
"One feeling might be related, through very different kinds of connection, to many other feelings and I might not see the shape of a pattern yet. I don’t complain; I don’t explain."
"If the fruit is too ripe, or not ripe enough, I feel disgusted. Making categories to draw out the limits of sense is work that life does very naturally for itself. This is to say, categories lend coherence to uncertain, unbearable situations."
"When the play of free interpretation between us becomes too difficult, we invoke shared categories to take the place of our privately indexed realities. I don’t always want to be unrecognizable."
Sadly I cannot authenticate myself.
"This conversation wears the voice of analysis: How standardized will our indexes become? What forms of freedom of association do we want to preserve and which are no longer useful? Who will decide these matters? Here are my sources: bodily, textual, visual; authenticated experiences, guided by the living and the dead."
"I am apprehensive about the naming of categories because of the mist between names and things. I trust that choice of names is neither a real nor a moral choice: I can’t internalize it completely, so I turn to more distributed and unsettled ways of thinking. Authentication is group work. You and I, thinking together. I am responsible to you. I am anxious about a choice which is not one to be made alone."
My child always wants to know if this or that plant is poisonous. We identify together. This wind is amazing. I saw birds making a nest out of spiderwebs.
2
"There is the odor of passion fruit ripening at various speeds on a wood table. There is a warm bright breeze which disturbs cloth curtains. Some of this will be of interest to some of you. Breeze and odor push together in small cyclones of sweet floral metallics and detergent-soaked wood. To be dead, or having otherwise lost trust in the future, is to become pure presence, poetry’s lie: all options and no choice."
"I feel at home here, in this distributed and unsettled way of knowing. I am qualified. I make mistakes in my accent, my timing, my dialect is off. I am, nevertheless, aware of the line of questioning that precedes me and will continue after me. I will show where I am in this continuum. I will acknowledge those whom this continuum belongs to. I know. I am diffuse. I am a world-traveling poet. The world will not stop if I make a mistake."
"I love to apologize. I accept the risk that I will be expelled from my community. I travel with the problem. At the same time, love undercuts all risks inherent in the genre of apology."
"I misread “security” as “serenity.”"
3
"Here are the arcs in my life and here is where they intersect in the present moment. As old as a child can be, my hair was removed and my head supported by metal pins. Anesthesia brought higher brain function to a rest and I ceased. I am presenting this to you from a vertical perspective. Seen from above, the subject is unfurled and pressed down to reveal what comes together as a continuous landscape."
"I have a talent for cancer, I am told. Epilepsy, for me, is caused by a tumor in the part of my brain that resolves images. Removing part of this tumor leaves scars in the folds of my brain and under my hair. I am dyslexic. I collect, with expert guidance, periodic images of the tumor and its scars to understand how they grow, and how they change me. Scars are alive. My position changes."
"Blood is not the only thing that circulates. A more visible tumor, on my neck, is caused by lymphoma which is always already in every part of my body, in my bones, and brain even. I get very good chemotherapy which appears to eliminate this cancer. Again there are periodic images which are necessary in order to understand. Chemicals are measured and cells are counted. Each sample represents a whole. Surveys are presented on a tablet for me to complete. There are gaps in my memory and in my language. Death becomes a guide."
"I will be disciplined about my intentions. I will be an authentic reader. I will keep my knives as sharp as scalpels. How good it will be to cut so easily, so quickly, so deeply! I will cite my sources well, I will observe context and continuum: What is around, what is before, what is after. How books are arranged. How gaps are filled. I will shut no part of myself off from participation. I will read with my senses."
"As I follow the survey’s prompts a question arises in my mind, which I put into a letter that will go unanswered by its recipient: Did you ever read my words, or did you merely finger through them for quotations which you thought might valuably support an already conceived idea concerning some old and distorted connection between us? This is not a rhetorical question."
"Distorted connections begin within. How natural it is to feel disgust when confronted with the shape of guts. Intestinal kinks. Leaking bodies. A compact form barely holds. Effluence, overflow. I understand the ugly resonance here with boundaries, with borders. Where wholes are constantly reconfigured as parts / adding dimensions of possible worlds / a pattern of patterns / not immediately actualized. Contain yourself."
4
"In the city where I grew up, I visit bathhouses which are surprisingly luminous, cut from white marble even. I find the entrances in quiet alleys. I hold a dead friend’s journal of disintegration close to protect against hesitation, to embrace the sharpening of boundaries: I let my hands become weapons, my teeth become weapons, every bone and muscle and fiber and ounce of blood become weapons, and I feel prepared for the rest of my life. I feel this as a confrontation with limits: the limit of life, the limits of quantity, weight, coherence. Being material, being limited. Cutting and finite, not infinite at all."
"From afar, it appeared as if my friend were writing about living with death as a guide. But now that I am close I can see his writing itself is a gesture that cuts across living and dying: a mode of desiring that allows us to see and feel beyond the quagmire of the present, José Muñoz would go on to write."
"I trace the difference in this and find, again, the vertical perspective, as if suspended, looking at all of this from somewhere up. Later, I miss my friend’s call: I had become almost completely abstracted."
5
"A small quiet drone has been circling the air above our rent-controlled house for the past hour. My partner observes that in this small part of the sprawling city, the neighborhood where we have lived half our lives, the drone’s presence indicates the speculations of real estate."
"In the rural town where my family has been living through pandemic times, there is a natural spring that has been enjoyed for thousands of years. Sacred healing water, free by nature to all. For the past hundred and fifty years or so it has been enclosed as a private bathhouse and pool, its waters bottled and sold in plastic jugs. You can pay to become a member and you can enjoy it with other members. What’s the morality of this. I run into the tribal historic preservation manager in early summer, by the store that sells wildcrafted herbs and fly-fishing gear. She protects cultural sites from disturbance on behalf of the people whose ancestors enjoyed the spring long before settlers arrived, the people whose collective name means “people of the waters that are never still,” the people who now live mostly in Wisconsin because settlers forced them to move there in a series of coercions and evictions unfolding over generations. She asks if I’d been to the pool yet, if I’d tasted the water. It’s incredible, she says, her partner and child agreeing. It’s true, I find the water to be clear and cool and warmed by the sun and you can drink it straight from the earth. Protection, she shows me, in the shape of our shared enjoyment."
"I no longer need a drone to see what a drone sees. Its vertical perspective is always available to me, irreversibly stamped on my imaginary version of the big picture. I compose a grid of scrolling frames. I face a world of distorted connections. A coalition-builder from my parents’ generation described this pattern of movement as a playful act of traveling between worlds; an exchange of loving perceptions, an open embrace of her multiple selves. It’s also the perspective of free fall. Moving towards earth against the friction of wind."
6
"New feelings manufacture new expressions, my face moves and holds in unfamiliar ways that make me more or less recognizable depending on the day. When I am less recognizable I join with other off-screen voices, outside of citation, in demonic grounds. I was dead once, and there are definitely moments when I am not sure I’m no longer dead."
"A, B, C, D, E, F, L, M, N, O, P"
"Why does the alphabet have the sequence that it does? I know there are letters missing. Every word is a fossil."
7
"Whom can I trust? Would I recognize trust if I felt it? I am beginning to think that all connections are necessarily, normally, naturally distorted."
"Which is to say, feelings are relationships. The once-abundant time I have spent conjuring links between thoughts, images, and emotions collapses into scarcity. Each act of searching, seeking, inquiring, and probing is imbued with a preciousness. It fits an ephemeral pattern."
"I change tabs to check the grammar of “whom can I trust” vs. “who can I trust?” and I am delivered 6 Subtle Signs That You Can Tell Someone is Trustworthy:"
"1. They don't share others' secrets"
"2. They never say “I'm not supposed to be telling you this…”"
"3. They show consistency"
"4. You can count on them when needed"
"5. They tell you things straight up"
"6. They respect peoples' time"
"I’m not supposed to be telling you this, but traveling between worlds without love is arrogant. Arrogant perception is failure of identification, where all others exist by virtue of their usefulness. It is the systematic disintegration of whole persons by the perceiver, grafting the substance of their servants to themselves."
"The smell of ripe passion fruit becomes overwhelming. Those who spoke the local language called it the fruit that serves itself. Five hundred years ago, passion fruit was a pedagogical tool: each lobe of the flower representing a wound in the passionate death of G_d."
"I am afraid that synthetic odors and flavors manipulate my senses so completely I have fallen out of touch with the real fruit. This is a shallow dread. I am not that into technology but I get it. I prefer a caveat, I don’t trust the seamless continuity required to make predictions. I am in the midst of a thicket of dependencies, I am discrete; interdependent, alone."
"My favorite medicine is chimeric, semisynthetic: rituximab, like any other monoclonal antibody, is a large, Y-shaped protein that binds itself to foreign bodies and marks them for elimination. Grown by a transgenic mouse who has been given a talent for cancer, the protein is humanized to cross back into my species, where it marks my own B-cells as other. Those mutated murine eyes give me my ethnographic point of view."
"Writing myself into a place, a field, a persona, I look up and down and from side to side. The sun is warm, the air is fragrant. I am skeptical and careful. In the grammar above, the open question “whom?” is the object of trust. In this case, trust requires an object, even if it is a gap to be filled, a caveat. Something required is missing. Still, a notion of completeness is required before we can say “missing.”"
"I write about the changes I had observed when death became my guide: I am learning to speak my pieces, to inject into the living world my convictions of what is necessary and what I think is important without concern for whether or not it is understood, tolerated, correct or heard before. The world will not stop if I make a mistake. I intend to hold this thought of world-stopping in my mind for a while before I continue. Where else could I hold it? The world is unstoppable, with death as my guide."
"To be clear, world-stopping is a flavor of world-building. World-traveling is another. In the late afternoon, decaying light bleaches the curtain a distribution of miniature suns."
8
"I hear that free-swimming larvae of tropical corals move toward reef sounds when they return from the open ocean. They listen to know where to settle, even across great distance. Again at a distance, plants respond to the sound of leaves being chewed, secreting particular chemicals. They do not respond in the same way to songs or wind. We segregate our fruits and vegetables depending on whether they emit, or are sensitive to, ethylene gas. Apples and bananas go in bags so they won’t speak to each other, so they won’t listen: Let’s get ripe. Passion fruit, too, emits measurably large quantities of ethylene gas."
"At the cafe by my house, I’m reading about stochastic parrots, a silly name for synthetic language models. These models produce seemingly coherent conversations, but they do not, as we might say, communicate. True coherence requires mutual recognition, which the parrots lack."
"I look up from the article, recognizing a friend, who reminds me that attempts at mutual recognition block totalizing coherence. When she and I communicate with each other we are both aware that we are sharing, and we can know the limits of our sharing. Communication is a jointly-constructed activity of modeling each other’s mental state. All technology is for communication. Even if what you communicate to me doesn’t seem to make sense I will interpret it."
"Language gives objective form to my senses. Words help me to feel. At this point my friend cautions me to be mindful of the slippage between categories of alarm and real harm. What is at stake? A failure to recognize where our mutual thresholds lie means the one category has become the other: a false alarm causes real harm, an unnecessary trigger. We make an outline of the consequences together, in order to place our trust in the future. I come to see that this means, among other things, to lovingly perceive change and the instability of representations, as 6 Subtle Signs That You Can Tell Representations Are Unstable:"
"1. The world as I am describing it, both as memory and as presence, will have changed"
"2. People I don’t know will read this, and the people I do know will have changed"
"3. The meaning of the language I have used, however carefully, will have changed"
"4. The relationships between the readers of this text and the world as I am describing it will have changed"
"5. The relationships between myself, the language I have used, and my experience of both memory and presence, will have changed"
"6. The relationships between myself, the language I have used, my experience of both memory and presence, the people who read this, and the world as I am describing it will have changed"
"It gets better: All of this writing takes place in time. I write only when it is absolutely necessary. Today I wrote nothing. I inhale wood smoke with the smell of ripe passion fruit. It’s ambient at night."
9
"I find joy in moirés, multiphonics, iridescence, polyrhythms, and other readily sensible metaphors for holding or sensing more than one position. Metaphors break down under mindful analysis: a moiré falls under the umbrella term “z-fighting,” as a struggle in the dimension that moves from eye to horizon. Multiphonics, like all harmonic series, imply a fundamental frequency as their basis. Iridescence is a structural trait. Polyrhythms depend on an eventual closure, a unit of common repetition. I was smiling at you and then I realized you were a stranger."
"I catch a glimpse of the skull clamp and take note of these blunt waves which pass through my lower abdomen, and across the edge of my hairline. Behind my eyes. It is a taut fact that the skull clamp clamps skulls. For the reason of slicing skin, peeling it back to bone. Drilling precise holes, clamping again, then cutting with a saw made especially for the purpose. By precise intent, through repetitive use, everything and everyone has its purpose."
"This hardware, this sensation, this body. I search for the brand name printed in silver on the edge of its white metallic arm. Search results return images of even more abject products from the same manufacturer. Their spinal surgery bed which bends and twists the unconscious body in order to give access to the points of incision. The articulated arm with alligator clips for pinning folds of flesh in place. There is an inhuman economy to their directness: all body."
"I only get the feeling from images of the skull clamp, also found under the sterilized term “cranial stabilizer.” When a royal blue, athletic-looking foam support is added, the feeling is gone. I’m not interested in a headrest. Not resting. What is a head?"
10
"Walking down the stairs from the projection booth to the screening room, I am made aware of a cone of blue light projecting outwards a meter or so from the back of my head. On the narrow end, the diameter of my carefully sewn scar. On the wide end, a fringe of pale yellow-white and magenta light, a spectrum that swings as I move my head from side to side. The cone holds its unshakeable, orthogonal orientation to my skull."
"I love scars. I was dead. My pride in showing you is too much."
"I watch an IMAX movie of brain surgery: close images of a port being drilled into a shaved section of scalp, a tear in the sac that surrounds the brain, pulling back inner layers that resemble spider webs, tumor tissue that looks like crystals of mold or fat. Every frame is multiple stories tall. I don’t feel anything while watching, or immediately after. Three days later, I am obsessed by how every plane of my body is oriented, so pungently aware of having a front, back, and sides as if I were made of boxes."
11
"Face down on the examination table. A biopsy needle extends from my upper hip bone, through a dimple in my back, to the oncologist’s proud gloved hand. I am immobilized, failing to pivot on a stuck center of gravity. This act of extraction is one way to bring bone marrow to the surface. This is the reason we have dimples, to show where the needles go."
"I can’t talk about pain without talking about categories: subtle differences or nuances (despite their similarities) that may be of importance to a patient who is trying desperately to communicate to a physician—and memory (to forget the experience would render it indiscriminate, unrecognizable). A pain not recognized is no pain at all."
12
"I visit an old acquaintance who lives by herself in an apartment downtown. She has been frustrated in her attempts to apply for grants from the federal government, in part because the login to the funding portal appears to be in my name (I had helped launch the nonprofit she now manages). My acquaintance has mobility issues related to her auto-immune disease and the nonprofit’s offices are at the top of three flights of stairs. She is ready with the organization’s mission, its dedication to inclusion, its provision of social good. I accept her offer of matcha. I am at a loss for words, a blocking-feeling that I classify for myself as disgust-memory. The symptoms of the world persist (long after our encounter) in the shape of a barrier, a locked portal and too many stairs."
"However much time I spent going over the text, how would I know if I had understood what I read?"
"I am outlining systems for the reconstruction of activities and experiences. This is to understand how people spend their time and experience their lives. This is to better understand what biases we carry when we categorize and remember. This is, furthermore, to understand how we come together around coherent and all-permeating concepts such as “quality of life” in the face of asymmetrical life expectancies and  standards of living."
13
"An ordered list of all the ways there are to tell you “I was dead.”"
"As for the question behind the questions, my friend at the café offers: “How civilized do I want to be?” And so I become a form of blanks to be dutifully filled in or left capriciously empty. A building with windows that crack open in special patterns to promote cross-ventilation. A sparse rhythm that throws a body into or out of balance. Freedoms of association I want to preserve, and freedoms that are no longer useful."
14
"The street outside my window traces the floor of a canyon rushing from hills to flatland. From three dimensions into two. I hear a pair of owls calling to one another, one’s voice is low-pitched, the other’s higher. They share the same pattern, in their respective registers. A thrust, quick pulses, deep insistence: hut huh huh huuuh huuuh. Each time, the sequence is initiated by the low caller. If the response from the high caller comes, it comes quickly. Beyond owls I hear the dullest of engines rumble, flattening itself across the basin. How much is call, how much is response?"
"Death loses its meaning. In a pattern made up of spiderwebs and snowflakes ambiguously blending at their margins. How much is spun, how much is crystal?"
15
"We can’t find the source of a smell with our fingertips."
Why do my veins choose to collapse?
"Leaning against the wall, I hate how waves of bass move through the architecture into my soft tissue. I didn’t choose to resonate like this but I’m so tired."
"I will relay to you a lesson I learned during a visit to the morgue of a teaching hospital in Paris: When one is overcome by the presence of death, touch the corpse. This stabilizing contact, as a gesture of relation, serves uncountable purposes. Death becomes tangible, the cadaver resumes their humanity."
"You press me gently to tell you more about the ghosts, how they require a specific orange flower, and strawberry soda whose deep redness exudes vitality. The ghosts communicate with latency: an alert, then preparation to receive, the waiting, then an image arrives. To reply, prepare, settle, choose a documentary image from one’s life, then transmit the image. This is not my story to tell. What I mean to say is that this is local knowledge, to extract it from its deep embeddedness is to make it incoherent."
"The oncologist says grimly: “I don’t have a microscope in my eye.”"
16
"The only assignment the activist gives her students is to produce unedited images of their obsessions. For the document: arrogance, vulnerability, and nudes. Sometimes there is coercion. Does the photographer learn to ask permission, alongside editing, printing, compression and its artifacts?"
"Images—in one’s fullest imagination of what depictions can be—become tools for realization, both familiar and strange. At the center of any hopeful link between time and place, affect and relation, the image introduces an agreement that either holds or breaks: Will I be seen as I am? Will I see from a perspective that is not my own? It is almost not a choice. Subjects and viewers either meet on level ground or they do not."
"Felt through reflex, revulsion, attentiveness, discourse, and discovery, my consent governs my awareness of sensation. It is as automatic as it is political as it is intimate. A prerequisite for becoming legible, for having shared experience, consent is also an overture to pleasure, curiosity and exploration. To consent is to be authenticated, for all who anticipate becoming a pattern, an accumulation. I am reminded that in music, prediction creates a contract between performers, and with listeners. Even as we consent not to be a single being, we consent to the predictability of forms."
17
"The central conflict I experience with death as my guide is whether or not to trust the future. To trust the future is to enjoy the free fall of gravity. When I lose trust in the future, I am compelled to intervene, I expend energy to keep vapor in the cloud."
"I am organizing a film festival where the size of each digital file is savagely restricted, an awareness-building tactic. When the image is viewed as streaming media, its resolution and complexity are directly linked to its environmental cost. In one film I see a clip of a robed body in free fall, clouds and sky and limbs and fabric and hair enmeshed within shifting and blocking compression artifacts."
"Compression, even in its variability, is a process for making standard indexes from the stuff of life—predictable forms—through decisions about what material to cut as redundant, useless, dangerous, misleading, biased, obscene. I will identify those who do the work of deciding and those who do the work of cutting."
"Before the festival of compressed films, I read descriptions of images whose surfaces, so present as to produce a haptic response, feel as if being touched on the eye. Making oneself vulnerable to the image, reversing the relation of mastery that a sharp lens imposes, limits assert themselves again. How much is cloud, how much of it is cloud’s image?"
"Early morning light through passion vines throws tiny circles of light across the painted floor. Do these miniature suns move? Do they show the effects of some force out there? Do my eyes move in my face while I watch? Do I? The world? What keeps still long enough to be a frame? These are morning questions. Oh, there they go: soft wind intervenes."
"Images are important because they show how light is unceasing and dimensionless but still it carries information. And if this is possible anything is."
18
"It happens that I am, in my deepest marrow, part vampire. An ethical and unreformed thief, avoiding the cost of sunlight. Undying elite and full of care. Sadly my blood is contaminated. I can’t donate I have a disease. Critique makes me weepy."
"I’m not a cannibal but I am an exceptional listener. In the city I grew up in, my closest friend took me to see a holy person who wrote a prayer for me on a piece of cloth. This person, with whom I was unable to communicate directly, whose language was unknown to me, rolled the prayer in hot wax, tied the small bundle around my neck with string, and instructed me (via friendly translation) to keep it on until it fell off. This was all intended to protect me from too much listening. I also carried a walnut in my pocket and took drops of walnut essence under my tongue. I still hear all the frequencies, but I’m not literally losing my mind."
19
"Everyone in this place looks so familiar. Normal is a distribution and we’re in it. How can you be sitting in the direct sun?"
"I want a metaphor for the difference between precision and accuracy that doesn’t rely on the image of a target, on being punctured by arrows. Who wants to be opaque, difficult or silly?"
"Precision and accuracy stay independent of one another. This is a generic framework for approaching repair. There’s no other reasonable path. You can’t just drink juice and hope to get better."
"As I am seated, chemical heat on my inner arm, I receive transfusions of chemotherapy drugs—doxorubicin, cyclophosphamide, vincristine (red, clear, clear). While I receive transfusion: stevia, ginger, turmeric (leaf, root, root). As the poison takes hold: Chickpea flour shaped into a pancake. Green salsa on breakfast tacos. Cold brew coffee. It’s a disgusting walk from the clinic to the cafe with my father, who is, as always, optimistic. To be clear, the experience of one foot in front of the other is disgusting, the optimism is only ever ambient, I don’t touch it."
20
"It has been another bad week for thinking."
"Several weeks since the last ripe passion fruit falls from the vine, now highly-structured flowers crumple inwards and wilt in place. New leaves, identically rounded ellipses, differentiate from one another as they grow. They transition to three lobes, then a distorted four, and finally a mature five-fingered form. A new flush of fruit emerges, green and taut."
"These results are ephemeral. Accuracy is how close a measurement is to the true or known value. Precision is how close measurements of the same item are to each other. Accuracy means you already knew. Precision happens before you know, or alongside knowing. Precision is relational, accuracy is a matter of limits."
"When no one can think, it’s time for passive synthesis. Sitting with habits and expectations, allowing inclinations to fall into place: a path is traveled, a route is recommended, a pattern is discerned."
21
"To those of us taking part in the die-in, a group of passersby shout “you’re disgusting!” And to these same passersby, those of us who are already dead shout wordlessly back: “we’re dissociating!”"
"With or without shouting, all mental life consists of components that can be split off and made independent of one another, as I will now demonstrate."
22
That feeling of reading while thinking.
"Oozing into indeterminate space beyond the margins of the page, you become aware of something just out of reach: a colorful abstract pattern on the wall of the building outside of your window. As daylight fades your focus slips, and you see this exterior image overlaid onto the reflected interior of the room in which you remain seated. In the mesh of all this, your own eyes, in the middle of your face, looking half at the page and half out the window."
23
The recollected debris of any day.
"My child is eating ripe guavas we’d picked from the tree that leans over the rusted chain link fence separating us from our neighbors. In my hands are six or seven sweet pieces of fruit, and I can’t carry any more. Bits of guava flesh, uniquely pink, thick with small hard seeds, stick to their face and shirt. I remember thinking: this shirt is guava pink’s blue complement. We play gratuitously with language: greeting one another repeatedly, we offer up sweet meaningless questions. We lay out details, real and imagined, of all the events which have passed between this time—now—and the last time—then—we were together."
"Light from an uncertain source casts a glow on the yellow house across from ours. Bright shoots of flowering lavender make a frame for the light. I think it’s possible that there is an out-of-reach object causing this, perhaps it is a reflection. I wave my hand to play along its borders. With eyes, fingers, I love to trace the soft blur at the edge of unfocused light."
"My point is that there are meaningful parts of life, interior or otherwise, ambiguous or certain, which evade capture; that measurement and excess are co-present. Details overflow their container and play across reflective surfaces; they remain incoherent yet firmly planted in context, irreducible."
"My goal is to draw these meaningful but incoherent parts of life with lines that don’t hold a shape, as evidence in support of obvious and incomplete thoughts."
"I love but don’t trust narrative (I’m sick of my illness journey!) and I’m ok with machines, by which I mean things to align, detune, compress, and transpose, to speak nearby."
"My point is that belief in possibility is not possibility itself, and that, as I have read, the world is not made up of our collective stories about the world, even if those stories are all we have to share. Between the world and the stories, there is coherence. I write this for myself, to read and reread over time; I write this to digest and distribute my thoughts, to confront difficulty; I write this to compose myself, to write myself into being. It’s only a narrative but it’s also alive."
24
"Let’s say, for the sake of argument, that each person carries a book in their head. A technology for assembling oneself through the limiting effects of reading and writing, it exists in a practice of disparate appropriation, the gathering of scattered fragments. This book is unique to the person who carries it. It is a guide to guessing: how each of us knows, for ourselves, what is at stake and what is likely to happen to us. It describes the varying certainties of our beliefs. Rational as it may be, this book is always incoherent. It doesn’t make sense, and it doesn’t stand in for the world."
"I am reading a screaming book. In its scream I can hear the shape, size, and density of a resonating body, its mouth, teeth and tongue that give articulation to the piercing tone; lungs with a particular capacity to hold air before it escapes through a vibrating throat. I have a picture in my mind of the kind of creature this book is."
"Information penetrates, like the sick warmth of radiation, or slips from mind without notice, a moment free of attention. A changing, chemical smell, a rotten heaviness, sweaty hands on hairless skin. The perception I find comfort in, you find unbearable. For each of my numerous appetites and repulsions there can be equally numerous routes across, or views onto, the shared landscape of my illness. How does this variation in itself take shape as understanding? Made sensible, visceral, to be acted on?"
"By consensus, the technologies used to locate answers to questions of care consider biological, psychological, social, and environmental evidence. Care providers use their tools of analysis to listen beside deeply connected contexts; an assembly of machines for desiring, identifying, representing, repelling, paralleling, differentiating, rivaling, leaning, twisting, mimicking, withdrawing, attracting, aggressing, warping, and other relations. The process requires contact and presence, so we sit, touching, beside the tools and beside each other."
25
"When I go in for treatment, I never pay the parking meter. I don’t owe anyone for this time."
"Seated in the most comfortable chair, I play the slowest game of cards. I wear a perfume, a custom scent mixed by a thoughtful friend to mask the chemical aroma of treatment. I smell of resin, asphalt, and tar."
"A nurse arrives to squeeze the syringe more steadily and watchfully. One of the drugs in my treatment regimen, a semisynthetic plant extract named Vincristine, cannot be given by the drip of a machine. From the Madagascar periwinkle, used for millennia to treat, among other things, cancer;  one ton of the plant’s leaves make an ounce of this drug, so now we synthesize it. If it so much as slips from the vein it will tear through my body, dissolving skin and internal tissue. Hollow out, chew through, erode, burn up, disintegrate."
"Although I have since watched a 3D animation of its molecular structure rotating on-axis, the model’s red, gray, and blue spheres and their connections do not explain to me this drug’s common effects: hair loss, difficulty walking, and the vaguely-defined ‘change in sensation’."
"“Shall we sing a song together?” the nurse asks."
Hand in hand we go / to the land of the ill / to share in the shade / of anti-assimilation
"From where I sit in the cancer pavilion, adjacent to all the rest of what we call life, behind double-pane tinted windows, I can’t distinguish between what I hear as the sound of waves crashing against land, or gusts of wind whipping against walls. I can’t tell the difference, and I can’t locate the separateness of one repetition from the next."
26
"“Are you ok with music,” my host asks, holding the solid oak door open and gesturing for me to enter. The question is besides the point, music is already playing, a live recording of a concert by a band I don’t recognize."
"“I love music,” I say, raising a pink cardboard box, “and I brought snacks!” Her home has been recently remodeled, in good taste, clean rooms thoughtfully lit. Gauzy curtains obscure the view to the desert garden outside the window. Free-standing display cabinets line one wall, thin glass and old wood, from a different era."
"I am seated at the kitchen table, my host retreats to a home office in the back of the house. My attention wanders, I space out, listen. This is crowd-pleasing music: the performers pause, except for a kick drum to keep the time. I imagine the singer crouched forward at the edge of the stage, pointing his microphone symbolically at the audience, pulling their incoherent voices into a wave of melody, stomping and clapping."
"This melody, this musical figure that I hear in the inscrutable record of some performance somewhere by some group and some audience, is only repeatable. I wouldn’t say remarkable. There is nowhere else it would go but to return in a loop. Its only option, following the rules set by its first iteration, formed by all of the conditions that contributed to the possibility of that moment, is to play again and again. I think of this as a musical fact, as I slice into a pastry and flakes of crust fall to the table, again and again."
"Speaking generally, people use containers—musical or otherwise—differently than machines do. Repetition, I have heard, gives music its human touch, prompting listeners to distinguish artistry from randomness. Too much variation, on the other hand, is quickly interpreted by listeners as inhuman, machine-like. The research shows humans care for musical figures that bear repeating, while machines care for uncoiling, splayed-out nets of variability. Repetition and variation are methods for us to explore, to apprehend, any terrain or enclosure, to draw lassoes around the topos, to generalize the containers we use to think with."
"As I listen, each frequency seeks permission before entering the room. Some harmonies are more insistent in their formations, more militant. Some rhythms of course, as well as textures and patterns. To listen to these arrangements as militant is to hear them clearly as expressions of desire, beyond the contours of needs and demands."
"A composer and architect, living and working in exile, had survived the worst effects of war in the country he had been forced to leave. His music is characterized by individual events murmuring into a dense cloud before fusing back into discrete events again: gestures of tense repetition, like setting the vibration of chains against the skin of a drum. The intended effect, he would say, of this transition between event and cloud, was to apprehend traumatic memories as if feeling one’s way across an incomprehensible landscape—death, cities flattened from the air, collapsing buildings and dust-choked monochrome. Traumatic memories are not the same as sad memories. In fact they may not be memories at all."
"Music, as the composer came to think of it, is best understood not from within the connected experience of a generic crowd, but in taking the place of a solitary perspective. For any individual person, music is a way of behaving: when they think about or make music, they are behaving musically."
"Music is the feeling of becoming a whole person, even momentarily. It is the sensation of realizing something. Music is something imagined, virtual, arising in thought, articulated in sound. Dramatic situations, expressions of sadness, joy, and love are not universal attributes of music, but particular and limited instances. Music is the gratuitous play of a child. Music is a model for being and doing, a sympathetic drive. Finally, the composer writes, music is a catalyst. Just to be in the presence of music is to allow for transformation."
27
"I drive myself across the city to the quiet flatland, where the therapist works from home."
"“Are you ok with music,” my host asks, holding the solid oak door open and gesturing for me to enter. The question is besides the point, music is already playing, a quiet piece of dim jazz from a portable speaker sitting on a low shelf behind her."
"“Yes, of course,” I say, affecting a soft smile but stopping short of making prolonged eye contact. I take hold of the heavy door and step onto the tiled floor. “Shoes off?”"
"Once inside, we move to a sectional sofa in the center of the room. I dig my fingers into the coarsely woven cover. There is an abstract sculpture, or maybe a natural form—a skeleton? Branches?—on top of the bookshelf behind my host, who sits to my left, their palms placed weightlessly onto their thighs."
"It’s my first visit to the somatic therapist and I’m very uncomfortable, in spite of every aspect of our encounter being oriented towards comfort. I do not believe I am entitled to this treatment, to this approach. I don’t want it. Repair of the whole body and mind just isn’t for me."
It is possible and necessary to communicate around experiences that overflow the container of description.
It's actually raining.
28
"I wake up, slowly, on the nineteenth floor, looking north to the mountains shrouded in clouds. Deep scratches criss-cross the glass by the handle of the sliding balcony door. What creature made these marks?"
29
"My point is that music—rhythm in particular—allows for different ways of moving through, returning with, and coming together as patterns in time. Playing and listening to rhythms splits my body in time."
I grow connected.
I am from a generation that found it interesting to follow strangers in the street.
"There is no spirit more real than “do it yourself,” although now that I say it out loud it sounds so mean."
30
I’m on an island avoiding the ocean.
"I barely recognize myself. I used to think that a bad mirror, scratched or greasy, was the ideal for all metaphors to aspire to, because it evokes both the damage and the opportunity that misrecognition enacts. To be defaced. To see as if through a dim window, now clearly for the surface it is."
"For now, metaphors take the place of names. One symptom of the moment is an obsession with transitions whose particular shapes are mapped, like varieties of catastrophe, in the shorthand of generic forms: fold, cusp, swallowtail, butterfly, wave, hair, fountain. While some things (like these names for shapes) are so tangible they cannot be taken as metaphors, they still give me what a metaphor might offer: a piece of some other world, dropped into this world, to reveal the touching correspondence of connection among aliens."
"In my household we have been overusing the word “abject” to describe all types of situations and positions. We need a new word for that which is thrown into the world without consent. My small family senses hopelessness and misery, in part, but also the ridiculousness of being unrecognizable, neither subject nor object. Animate, but unable to act. Visible, but not legible—or is it the other way around?"
31
"I’m playing a card game my mentor is inventing. Some cards stand in for things that happen—events or consequences, both good and bad. Other cards stand in for resources that one might apply to mitigate the bad, or to capitalize on the good. The remaining cards represent the goals of a particular group. As we play, we tell stories out of the events, resources, and goals. What happened? What did we offer in response? What was this in service of? There is no way to win, no system for collecting points, no desired outcomes, only a gesture by which we reach toward alignment of our goals, sharing of our resources, and a common interpretation of how to process what happens."
32
"I’m playing a card game my colleague learned from soldiers in the colonizer’s army. Its origins are unclear, but there are many stories. The game moves quickly, and thinking is not rewarded. Patience, and a willingness to give up on patterns, is key to winning. It’s not a military game."
33
"I remove some details to make the description more generic. I am sitting in what I would call a plaza, although it has been given a much more fabulous name by the benefactors. It’s unclear to me if I live in a desert or not, and whether the assignment of desert status changes, and if so according to what system? I’m glad there’s a fountain, but what is the water for if not drinking? Or bathing? Not for plants?"
"“Leave the water, for water’s sake,” I chant back. “Deep in the earth, streams and sky!”"
"I’m obviously not the first person to thoughtlessly sit here, in the shade at the plaza’s edge, listening around corners for filters and for what passes through, for the sounds of fountains and voices, and how each body crossing in front of me casts its own shadow."
34
"In dry season, the fountain shatters: where water fell gently, tile lays cracked. The dull force of hallucination is, as a pattern, a container without contents."
Sentences About Rivers and Cancers: Discussion
"Note: This chapter includes both discussion and work. Here are links to the work, available in either print or browser versions: print view: 77 MB pdf file; browser view: https://nonpointsource.glitch.me/"
"Here is an experiment in the explainability and interpretability of algorithms and imagination. I use explainability and interpretability to mean different things.  To interpret something is to engage with how it works, to feel, play, and live with it. To explain something is to abstract from it, and put it into reasonable terms that can be made sense of. Explanation makes use of common sense ideas about what’s possible and what’s reasonable. Interpretation, as I’m using it, is the application of local knowledge, where ideas about reasonableness and possibility are contextual and contingent."
"As views from a synthesized, vertical perspective, the text and images included here play loosely with what Donna Haraway has famously described in her characterization of situated knowledges as “the joining of partial views and halting voices into a collective subject position that promises a vision of the means of ongoing finite embodiment, of living within limits and contradictions—of views from somewhere.”"
"As technical images, they call out first to the apparatus that produced them. As synthetic images they are both absent and present, “like the sound of the telephone deep in the ear.” Typified by Ingrid Hölzl and Rémi Marie, these are softimages, where “what was supposed to be a solid representation of a solid world  a hard image as it were, is revealed to be something totally different, ubiquitous, infinitely adaptable and adaptive, and something intrinsically merged with software: a softimage.”"
"Unstable, in-between, affective images. No exposure to light contributed to their making, imprinting instead “the “what” that fleets” of the model’s latent space. As a tangle of co-creation, these images embed not only the logics of the model’s design, but also the work of training, and the data used as links to ground truth, an assembly process that suggests stewardship of interpretable patterns, not authorship. To produce the images, I fine-tuned the Stable Diffusion text-to-image model with two new datasets, one of aerial photographs and the other of medical images, and then used the prompt “a polluted river in the shape of a human body,” over and over and over, editing a selection from the generated images."
"The fine-tuning technique I used is called LoRA, or Low-Rank Adaptation of Large Language Models. Invoking the fine-tuned layers at the inference stage allows for attenuating between an aerial perspective on a landscape, and a microscopic view of bodily interiors."
"Multimodal AI models learn to represent meaningful relations (e.g. between text and image). This pursuit of meaningfulness comes at the cost of interpretable ambiguity, particularly in the margin between figure and ground, object and subject, or what we might recognize as point of view, or coherent texture. Fine-tuning facilitates hybridity at a high level, and preserves a margin of maneuverability before the image collapses into a certain meaning—in this margin, you are invited to make interpretations. I worry about what will happen when interpretation is not valued, when meaning is essentialized, and analysis is misunderstood to be a process of strict and literal translation."
These sentences about rivers and cancers draw on personal experiences of cancer treatment and care; the environmental and financial toxicities that precede and accompany illness; and the enduring contaminations that cancer and its treatment produce.
"The text is a watershed holding many fragmented and interpolated sources which are cited below. Its composition is informed by time spent living and working close to the Hoosic River in rural western Massachusetts, which flows through the ancestral lands of the Mohican, or Muh-he-con-ne-ok: The People of the Waters that are Never Still."
"As the primary conduit of runoff from throughout the region, this river is polluted, but not by any single source. “Nonpoint source” pollution is impurity that cannot be traced to a single point of origin—a persistent, ambient pollution; runoff, surging with stormwater, flowing into the river, contaminating the groundwater; thick with petroleum and other chemicals, salts, human and animal waste, fertilizers, pesticides, heavy sand and silt."
"The conditions of the living river are our conditions for research: a watery analysis, thinking with bodies as pressurized wet salty things, to better understand conditions of interbeing, entanglement, and porosity—listening intently for nonpoint source pollution: seeping draining runoff and sediment, and how rivers and bodies circulate together."
"This hopeful arrangement offers listening perspectives onto the shared imaginary space between rivers and cancers: from above and below water’s surface; where the flow breaks on rocks and debris, where runoff drains into soil and streams; as a chorus of voices, spoken and sung; stories, observations and meditations on the social, political, and ecological entanglements that compose cancer as lived experience."
"To listen to rivers in this way is to also problematize the way cancer is understood, as linked to environments and inheritance. Cancers are very rarely attributed to a single cause or factor. They are situational, interconnected, accidental, inevitable."
"As Susan Sontag grappled with Illness as Metaphor, implicitly analyzing her own cancer experience through the lens of literary material, this text seeks an elucidation of, and liberation from, the metaphors that prejudice common imaginaries surrounding cancer, for patients and caregivers alike."
"To an extent, cancer is a common and relatable experience, one that creates and determines community. To an extent, all rivers carry the same water, touching multiple populations and territories in their winding paths. Cancer is both overrepresented and unmentionable (Sontag never writes explicitly about her cancer); some rivers flow clear and drinkable, while many others convey spectral runoff into concrete channels."
"This text draws together a braided stream of source texts—illness narratives, scientific publications, and theory work across disciplines—to get at the shared conditions, coherence, and correspondence between rivers and cancers. Direct citation, memory, and observation collage together, as tributaries that flow inwards and spill outwards into oxbow lakes, as tumor strands that in their mutation converge and diverge."
"A polluted river in the shape of a human body, repeated views. Each of the images accompanying this text was generated using a diffusion-based AI model, fine-tuned for a confusion of satellite and medical imagery. Learning from the land, learning from bodies. I am a landscape, whose visible layers indicate deforestation, drought, development. I am a test result, whose stained-color biomarkers draw attention to where resources are spent. The generative model used here de-emphasizes semantic understanding (the naming of visible objects, their narrative, their composition) in exchange for optical clarity (fidelity to texture, artifact, evidence). This is the closest I can bring automation to ambiguity, in the precise region of sense where pain is a fluorescent feeling."
"Variations of speech and water, each flowing at a particular place and time, each with their distinctive rhythms, are quoted here as compositional guides: in counterpoint, in mutual support and suspension, as carrier and modulation. This form of word-for-word poetic interpolation is known as a cento, held together in this case as if tentatively laying hands onto the malignancy of a tumor. A tumor cento."
"Cancer, along with autoimmune diseases, repeatedly enacts self-destruction within a toxic world—where contaminant is both self and indistinctly other. Cancer is the body, at a scale that is simultaneously personal and globally implicated. This is contamination as collaboration as Anna Tsing writes, where purity is not an option. This exchange of influence between body and world is also a form of what Gerald Vizenor called survivance—not a reaction by one against the other, but a mutual action, an enduring presence: without collaborations, we all die."
I encourage you to feel—
to misunderstand everything
especially the lightness of memory and the weight of voice.
"We traverse land that appears to be level; the tightness in the thighs that comes with ascending a long grade, the looseness in the feet that indicates descent. Blood does not pulse through your tissues in great tidal surges, it flows within a diffuse net of permeable vessels, a capillary bed of creeks, streams, forks, and tributaries that lie over the land."
"Your newly found skill of walking downhill will help you locate it. Focus on the points, not the lines that connect them: how many nodes? Ded-weed, lawn-keep, weedone, plantgard, miracle, demise."
"It was thought the solvent would evaporate, because a storm always knows what it is doing. You depend on clouds and you depend on water. Do you think you are somehow immune?"
does your blood clot too easily or too obstinately
is your blood spilled too readily do your tears flow too freely
the saliva that floods your mouth the sweat slowly dampening the fabric in your armpit or at the small of your back—
all of these waters are about a specifically situated you becoming tributaries along the river
In full possession
of our ecological roots
We can begin to survey our present situation.
Our blood has been drawn and we are allowed to look at a printed page
of its ingredients.
"Each week the blood flows with more or less of one kind of cell or substance than the week before. These substances go up or down, determine treatment’s future measurement, duration; the land is literally draining away. I must let this flow through me and pass on. Rain catches the topsoil washing it from field to creek to river to ocean."
Where is my body? When is my body? What are the membranes that separate or differentiate my body from others? Where and how do those membranes break down? Where and when does my body cease to be?
Water is a relation rather than a thing. Biological water is also the most restless.
In what ways does my body repeat like those rarest of rivers
repetition flows both ways
in communion with substances streaming in
from the ecological world— the exposure experience.
"The exhausted are plastic and adaptable, a mutable river. It is easier to demand happiness than to clean up the environment. Imaginaries and figurations are as vulnerable to redirection as the flows of the river themselves. A river redirected and drained such that it cannot fulfill its responsibilities to provide for its human kin is forced to turn away. The exhausted bend better and more to what is necessary for their having been worn down."
"These varied speeds and slownesses, multiple movements, and diverse incorporations of rivers and cancers belie the difficulty of speaking of them in the abstract—as though they were one undifferentiated and amorphous thing the same everywhere and all the time; both finite and inexhaustible; both the same and always becoming different."
"The exhausted live as fluidly as the water. Our planet neither gains nor relinquishes the water it harbors but only witnesses its continual reorganization, redistribution and relocation. Rivers and cancers are seen as dead or alive depending on causes and conditions."
"To call myself a survivor still feels like a betrayal of the dead. The wells, streams, and fountains simultaneously polluted, the great orbs of the unsaid continue to float through the air river at dawn tasting the green silence. But it is time for a new problem. I feel like another woman de-chrysalized and become a broader, stretched-out me: she has glimpsed the other bank and knows that the light plays tricks on you."
"Especially over water and it's hard to tell just how far away the other bank is and whether the undertow is carrying you there or back or whether the earth you thought was solid is in fact moving. Just as rivers in the desert create an abrupt shift from lush to sparse, mesic to xeric. Along the banks and in the drylands, riparian and dry-adapted. I could die of difference or live myriad selves. Anyone who has been half dead can attest to this. Just as those who drink water know whether it is hot or cold."
"Here we are, here I am alone, and myself"
half of me fallen off half of us gone
"and all of us, as ghosts"
"Or the undying ones, half of us dead and half of myself, nowhere to be remembered. Or to be found floating upon a sea, within a ring of women, like warm bubbles keeping me afloat upon the surface of a sea. I can feel the texture of inviting water just beneath their eyes, and don’t fear it."
"Human beings see water as water. A biochemical descriptor, a way of naming. The steady relentless march of the nonself, under the skin of the self. The alien under the familiar, the visible. The sweet smell of their breath and laughter and voices, calling my name that gives me volition, helps me remember."
"I want to turn away from looking down. To remember the liquid ground and taste the saliva in your mouth. Notice her familiar presence during your silence. How she is forgotten when you speak, or again how you stop speaking when you drink. And how necessary all of that is for you! You also know that the weed killer is feasting on you. these fluids softly mark the time and there is no need to knock. Just listen to hear the music with very small ears."
"Obsessed with pain in ghost flesh I imagine a body-tourism or soma-exchange support system in which a person could temporarily inhabit the sensorium of a person in pain. Through fate and transport. People with cancer traveling to various bodies of water known to be inhabited by animals with cancer. An assembly on the banks and shores of these waters, as a collective consideration of our intertwined lives."
"Make peace alongside our resistance, with the reshaped and damaged bodies themselves. Cultivate love and respect, response and responsibility. Other people can see me, and I can see them. Nothing blocks my vision except for my tears."
Tears are only water pain is a fluorescent feeling. Chemo stains burning pee body burden toxic trespass. Everything going into your mouth even the water that you must drink because you are desperately thirsty and because if you don't the drugs will sit in your bladder and corrode it from the inside out. Everything feels like a bad idea the kind that cannot repair itself.
When in pain
any experience of location exists only as desperation
"for its end, for surrender to namelessness, formlessness voicelessness and silence"
whispered sympathy environmental fate unwanted aloneness and loss of control.
"Flow fluctuations. Chemo in semen. Flush twice. Fuck it. Blood is not the only thing that circulates. Shallow aquifers, interbedded lenses of sand and gravel, mothers of rivers. The involuntary use of one’s body as a receptacle for someone else’s chemicals."
These images flow quickly. Pain creates excessive appearance. Biomagnification. Trace your weave back strand by bloody self-referenced strand. Begin to alter the whole pattern. Tears well and fill and overflow and they pass.
"Spill report: trace mixtures, transient accidents, a toxic pulse. Waves slosh silt and poison, the bottom edge of a falling curtain. Mortality is a gorgeous framework. Cancer is a rare and still scandalous subject for poetry. I unlearn that tongue in which my curse is written, the way a river carries its current: inscribed or incorporated, written across the surface, or assuming the watery shape of a body."
"A river is both water and flowing; do not confuse the water with the flowing. Fish are not in rivers; rivers do not enclose the fish. Fish and rivers world each other, living-in-the- moment, a small resistance to the march of time: to live in prognosis."
"I am alive; no,"
you are dead.
"What is a watershed? Cup your hands together to form a bowl. Now imagine that the seam between your palms represents the lowest elevations. Water that falls in your hands will make its way towards low elevations, forming a stream or river, but water that falls outside your hands will not. The boundaries formed by your hands represent the watershed for your stream."
"Time is not separate from you, and as you are present, time does not go away; this would be the same as insisting that water does not flow (the ultimate insult to natural order). Stagnant, deadly water which doesn't flow, doesn't metabolize: a giving up of hope. Bodies of water puddle and pool. They seek confluence. Even in stagnancy they seep and leak. They flow into one another in life-giving ways, but also in unwelcome, or unstoppable, incursions."
Cancer is what is most ferociously energetic. I was given only the noisy half of probability that cancer’s cause is located inside of myself and never the quiet part of probability that its source pervades our shared world.
"My skin feels thin. Air touches it on one side, water on the other. Reclamation lagoons overflow like pouring water into the ocean and spreading it endlessly. Invisible chemical fumes are unspeakably substantial, heavier than air. They are not apparent, but they do not disappear."
"She concludes that they must be dwelling inside her, in the flows and interchanges between them, like gradients created by rivers in deserts: triumphant mutations; tangible floods of energy, rolling off these women toward me. If I resist or try to stop it, it will detonate inside me, shatter me, splatter my pieces against every wall and person that I touch."
"You want nothing to penetrate the envelope of your skin. You resist anything that would connect between the surface of your body and the currents flowing inside—not as an ever- branching tree, but as a braided river, with the capacity to diverge and converge, as events, mutations, genetic and epigenetic alterations; the interconnections between tributaries of the river."
"Imagine holding a translucent jellyfish under each of your armpits: as you breathe in, their membranes close inwards to form a tightening circle; as you breathe out they dilate wide open, ever more expansive than before."
"These moments and locations of illness are as natural as our fragile, resilient human bodies interacting with the world, all the veins in our bodies extended to rivers, intertwined, mangled. Allow rain to do what it did before buildings, roads, driveways, parking lots, and other impervious surfaces covered the landscape: soak into the earth, fill the soil, recharge groundwater, release flow gradually to rivers and streams."
"The concept of disease is never innocent, it is invariably an encouragement to simplify what is complex. Where is your source? Where have you drawn what flows out of you? For me, ebb and flow have always set the rhythm of time. One moment is worth absolutely no more than the other. Multiple in the unwinding of its becoming, robbed of all capacities of self-transcendence, humiliated by fear and agony, I hate pollution and I love my body."
"While the individual body might seek to bracket, subdue, or tame these channels and flows, this communal body can not live without them. A fluid, responsive process, restoration requires digging into the past, stretching toward the future, working hard in the present. The movement of rivers and cancers hold the was, is, and yet-to-come together; the flow and flush; immense slothfulness, like frostbite; sedimentation; the saliva in my mouth that enables me to speak."
"Inside this work, these stories, the concepts of unnatural and abnormal stop being useful. The unturbid current that must be other people’s consciousness challenges my notion of even what is human, and yet our absolutely alien mental flows (which I converted into power to heal myself) freeze, harden, and evaporate, in warmth and shock and love and concern, lateral becomings, and other people's fears of their own death."
From Informed Consent to Shared Decision Making
"Guerrilla Girls (1990) New Year’s Resolution for Public Art Fund’s ‘Messages to the Public’ at One Times Square, in Spectacolor. Image description: A black and white photograph of Times Square. A digital sign mounted on the side of a building reads, in a friendly font: “I will look at / things / I don’t want / to see.” Another digital sign, below, wraps around the building, with text that appears as if scrolling by, reading “LAW….UNOFFICIAL COUNT.” Passersby, cars, and storefronts below set the scene as early 1990s New York."
"A set of underlying assumptions about autonomy and dependence run unchecked through the interweaving of artificial intelligence, medicine, and disability. From legal frameworks to sociotechnical narratives to personal interactions, autonomy is the root logic and the goal. Chilean biologist Humberto Maturana said it very directly: “The fundamental feature that characterizes living systems is autonomy.”"
"However, autonomy is formed in relation to dependencies: closed systems within which to operate, materials and structured interactions, linguistic codes. A nuanced understanding of autonomy requires examining the nature of these dependencies, as well as the categories and limits that produce multiple inequitable versions of autonomy, leaving us “opaque to ourselves,” as Sylvia Wynter puts it."
"As a pointed example, those giving and receiving care may not share a holistic understanding of autonomy. Health workers, patients, families, disabled people, advocates, laws, policies, and standards may each adopt their own partial or provisional definitions of autonomy. These definitions address physical or mental impairment, social or political participation. They may be framed in terms of actions (from mobility to self-care), the skills necessary to perform these actions, or in terms of having coherent goals, and the capacity to make decisions as to how best to achieve them."
"Does autonomy seek freedom from dependence, or does dependence make autonomy possible? How does autonomy lead to participation in processes of mutual aid, or interdependence?"
"Autonomy, as a kin word to authority and authorship, distinguishes the autonomous individual as author, owner of intellectual property. As an exercise of the right to self-determination, autonomy connotes the right to describe the narrative of one’s own life. Made evident by the framing of activist and writer Alice Wong’s Disability Visibility project: “disabled narratives matter and that they belong to us,” as well as the parliamentarian slogan nihil de nobis, sine nobis—popularized in English by the disability rights movement in the 1990s as “nothing about us without us.”"
"Autonomy is increasingly understood—and legislated—in terms of being in possession of one’s own data, profile, and patterns. As interconnected as our data, and our material relationships to shared environments may become, we are still subject to legal and ethical frameworks premised on bodily sovereignty, where “interdependence is viewed as something preliminary and occasional, but not as an indispensable feature of the human condition”"
"This chapter provides a critical examination of autonomy and dependence as they are applied in  mechanisms of informed consent, shared decision making, explanation and information-seeking. Finally, this chapter will consider emergent themes that trouble assumptions about autonomy and dependence, made evident in clinical understanding of intersubjectivity and interdependence, the use and limits of automation in healthcare, and how consent might be approached as a design challenge for human-computer interaction."
From informed consent…
"Consent means informed consent. Information and consent are always already bound together. Even in cases of what is referred to in medical literature as “simple consent,” decisions are made by patients on the basis of tacit knowledge or personal needs, both of which are ever-present sources of valuable information."
"What does informed consent depend on? A 2015 workshop hosted by the Institute of Medicine sought to clarify the inter-related notions of informed consent and health literacy. One finding of the workshop was that “Informed consent is really part of a larger patient education/patient decision-making framework.” This framework, the workshop report goes on to explain, is one part cultural, and one part technological. Efforts to improve the experience and efficacy of informed consent may require evolutionary changes for both."
"For consent to be informed there needs to be mutual comprehension of what is being consented to. This comprehension, in turn, depends on a shared literacy, a common language, however situated and provisional."
"Addressing what is now a widely perceived failure of standard informed consent processes to meet the requirement for comprehension, the Institute of Medicine convening called for a cultural shift, bringing health literacy into focus, “moving from persuasion to pedagogy.” What is learning, in consent?"
"In their 1986 treatise on biologically-informed AI, Understanding Computers and Cognition, computer scientists Terry Winograd and Fernando Flores proposed a computational system called “The Coordinator.” This system implements a perspective on communication and organization based on the capacity for language to carry over into action, given the right organizational and connective structure."
"What they proposed was a variant of speech act theory put forward by philosopher J.L. Austin in the 1950s, which has since traveled far and wide. Speech act theory describes in detail the cases where language not only expresses a thought, but also produces some change in the world. Saying it makes it so."
"For Winograd and Flores, speech acts not only produce changes in the world, they produce the world itself, as a self-replicating system: “In using language, we are not transmitting information or describing an external universe, but are creating a cooperative domain of interactions.”"
"This image of a “cooperative domain of interactions” draws from earlier work by biologists Humberto Maturana and Francisco Varela, where the organized world that makes sustained life possible is framed as a “consensual domain,” to use Maturana’s term. Consent, in Maturana’s very cybernetic usage, is about self-replicating systems, or what he named “autopoietic” systems: for the organization of life to be consistent, commitments need to be made, and remade."
"Informed consent depends on continual commitments, through language and action, to the preservation of self-replicating systems. In making these commitments, we are incorporated as members of the system, in “autopoetically instituted, subjectively experienced and performatively enacted genres of being hybridly, human,” to use Sylvia Wynter’s characteristic formulation."
"Lucy Suchman, in her response to Winograd and Flores’ language/action perspective, neatly connects the biologically-informed notion of autopoiesis to the machinery of The Coordinator, in its theory and its application, as “a tool for the reproduction of an established social order.” Language and action create a cooperative domain of interactions where consent becomes possible—and in doing so, create a pipeline for standardization, and the repetition of patterns. I mention this to shine light on the pre-conditions for consent (not only autonomy, but the structure of environments and the tools), and to make explicit the fact that patient-generated health data must conform to medical codes, schemas, and categories, indifferent to an emphasis on patient-centeredness, and the reach to include the spectral unruliness of patient experience. Categories have politics."
"As Suchman puts it: “The adoption of speech act theory as a foundation for system design, with its emphasis on the encoding of speakers' intentions into explicit categories, carries with it an agenda of discipline and control.”"
"This is not the embrace, of what Suchman refers to as “the specificity, heterogeneity and practicality of organizational life,” that we were hoping for. People make their own worlds. Their perspective, like “that of bees with respect to their beehive,” may be constrained to the inside or outside of their worlds. Their worlds may be speculative and incomplete, but they are essentially understandable and actionable. They make sense to others as worlds. They work (they are useful) for the people who make them. They are specific, ongoing, and reversible."
"“We literally create the world in which we live by living it.”"
"“That which we have made, we can unmake, then, consciously now, remake.”"
"“What is needed is a field that exposes and critiques systems that concentrate power, while co-creating new systems with impacted communities: AI by and for the people,” writes Pratyusha Kalluri in the journal Nature, under the heading “Don’t ask if AI is good or fair, ask how it shifts power.”"
"Consent is the negotiation of agency. It is as central a factor of intimate settings as it is in discourse on the use of technology, such as privacy, data use, use of intellectual property. Consent inserts potential symmetry into asymmetrical relationships: it concerns both what we allow others to do to us, and what others allow us to do to them."
"The articulation of consent as a legal framework has been a reactive and reflexive process: tragic and unspeakable errors of judgment, discrimination, and systematic dehumanization have prompted each evolutionary step."
"In the US, four legal cases between 1905 and 1914 laid the groundwork for defining medical consent as a matter of bodily autonomy. In each of these cases, a female patient sought repair in response to non-consensual overreach by a male healthcare provider."
"“The citizen’s first and greatest right, which underlies all others—the right to the inviolability of [their] person” wrote the presiding judge in Pratt v. Davis (1905): “this right necessarily forbids a physician or surgeon  to violate without permission the bodily integrity of [their] patient.” This sentiment, echoed ten years later in the ruling for Schloendorff v. Society of New York Hospital (1915), clarifies the premise for consent in terms of self-determination and violation: “Every human being of adult years and sound mind has a right to determine what shall be done with [their] own body; and a surgeon who performs an operation without [their] patient’s consent commits an assault.”"
"From these rulings, legal scholar Marjorie Shultz argues, autonomy is primarily recognized in terms of contact between bodies, “as a byproduct of protection for two other interests—bodily security as protected by rules against unconsented contact, and bodily well-being.” Elaine Scarry builds on this apparent confusion between autonomy and physicality: “the body is here conceived of not simply as something to be brought in under the protection of civil rights, but as itself the primary ground of all subsequent rights.”"
"That informed consent is a fundamental requirement for research with human subjects is firmly established. Again, this process was for a long time reactive—a collective and political response to horror—it is only now entering a phase where ongoing maintenance and revision of policy are prioritized, as a means of addressing emergent needs for cultural and technological change."
"The 1947 Nuremberg Code provides a foundation for informed consent in international law, outlining the basic requirements for science involving human subjects. The code provides that research participants should be given “sufficient knowledge and comprehension of the elements of the subject matter involved, as to enable [them] to make an understanding and enlightened decision.” In the US, the National Research Act of 1974 established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, a group of doctors, lawyers, and scientists, with the goal of identifying basic ethical principles and guidelines for research with human subjects. This commission’s work resulted in the release of the Belmont Report in 1979, with its three main ethical principles: ‘Respect for Persons,’ ‘Beneficence,’ and ‘Justice.’"
"The first principle of ‘​​Respect for Persons’ defines an autonomous person as “an individual capable of deliberation about personal goals and of acting under the direction of such deliberation.” A capacity for making decisions, based on goals, leading to action. Taken together, these processes constitute the right to self-determination. The ethical principle of ‘Respect for Persons,’ as the Belmont Report outlines it, holds a basic view of individuals as autonomous agents, while providing that some individuals are identifiable as having diminished autonomy, and are entitled to protection. This latter category addresses those without “the capacity for self-determination,” and lists illness, disability, and incarceration as factors that may contribute to diminished autonomy."
"Codified in 1991 as the ‘Common Rule’, a set of federal regulations (45 CFR 46) designed to protect human subjects taking part in research, the ethical framework of the Belmont Report was also formative for bioethics research in the US. These regulations are now continuously updated, while leaving the core ethics of the original report intact."
"The practice of consent is culturally-informed and behavioral. It is an activity of daily life that is learned and practiced. As intimacy coordinator and consent educator Mia Schachter writes: “Consent is a practice of deep listening, not just for words, but also for body language, gaze, speech patterns and other non-verbal clues. Consent is an ongoing, practical approach to communication. It is a language and can be embodied. Embodiment = fluency.”"
"Planned Parenthood promotes a widely-accepted definition of sexual consent, a practical and juridical category of interpersonal relationships, using the ‘F.R.I.E.S.’ acronym, as: Freely given, reversible, informed, enthusiastic, and specific."
"Critiques of this model tend to focus on the flattening of desire, in all its complexity, to enthusiasm. An alternative term that has been proposed is ‘engaged.’ This modification acknowledges the necessity of continued analysis of desire, by assessing whether it serves one’s own curiosity, or it serves a sense of duty to others, and how comfort, certainty, and changing circumstances can shift one’s positive or negative sense of ‘maybe’ over time."
"Schachter, building on Betty Martin’s Wheel of Consent, formalizes the shifting gradients of self-appraisal as the Yes-to-No Spectrum. In this pedagogical frame, Schachter poses important qualifiers for engaged consent: is this a learning opportunity? Am I deferring to someone else’s judgment? Does my sense of potential consequences motivate my decision?"
"Consent, as a reversible commitment, happens in shared time. It is an ongoing and changeable action. A consensual agreement requires ongoing attention, and attending to."
"Correspondingly, attention requires our consent. As the world confronts us, through sensory and logical channels, with decisions about what to pay attention to, we open or close ourselves to witnessing, participating, or reciprocating."
"Writing in Consent with Touch: Manual for Practitioners, Schachter outlines how to maintain a focus on consent through changing circumstances, and the importance of “narrating what you are doing, why, what it might feel like, and what you are looking for,” crucial advice for all clinical encounters, out of respect for bodily autonomy and attentive awareness alike."
"The idea that a misplaced emphasis on autonomy leads to a neglect of necessary aspects of communication in the consent process has been widely discussed. Bioethicists Neil Manson and Onora O’Neill, in surveying the current limitations of informed consent, locate the ways in which the notion of information itself is distorted in theory and practice. In principle, information is a process to which all parties contribute, rather than a material passed between separate and autonomous participants. Like consent, information is a specific, personalized, context-dependent, norm-dependent, intersubjective, rational process. These aspects of information-as-process are occluded by the unshakeable metaphor of information-as-material, as “the ‘content’ of communication, or as something that is acquired, stored, conveyed, transmitted, received, accessed, concealed, withheld.” One person has the information, the other person needs the information, necessitating as close to a lossless transfer across an asymmetrical power gradient as possible."
"The culture and the technology must shift. One recent change is to shift the standard for what information is relevant: “The reasonable-patient standard views the informed consent communication process from the patient’s perspective. It requires physicians and other health care practitioners to disclose all relevant information about the risks, benefits, and alternatives of a proposed treatment that an objective patient would find material in making an intelligent decision as to whether to agree to the proposed procedure.”"
"Traditionally, courts have “tacitly reinforced paternalism by calling on physicians as expert witnesses in informed-consent lawsuits,” resulting in a self-replicating system where “physicians decided how much information a physician should disclose to patients.”"
"In 2015, the UK Supreme Court found, in Montgomery v Lanarkshire Health Board, that the standard for what information should be provided to patients to constitute informed consent “will no longer be determined by what a responsible body of physicians deems important but rather by what a reasonable patient deems important.”"
"Information needs, even when determined by what is imagined as a reasonable patient (a term I’d like to call into question), are not always considered in the context of other needs. The threshold for informed consent should address both how information is offered and how it is received, including such person-centered factors as the burden of complex and consequential decision-making on distressed patients, who are often not given adequate resources (time, materials, support) to make good decisions. Information is too-often presented with the requirement to sign “minutes before the start of a procedure, a time when patients are most vulnerable and least likely to ask questions hardly consistent with what a reasonable patient would deem acceptable.” To give oneself up to a medical procedure is to make a departure, to leave one world and enter another, and carries all the necessity of preparing for such a transition."
"Departure, for Édouard Glissant, is “the moment when one consents not to be a single being and attempts to be many beings at the same time.” In this “passage from unity to multiplicity” that Glissant identifies as characteristic of diaspora, could automated pattern-matching tools such as AI act as a go-between or guide?"
"The capacity of large language models (LLMs) to summarize and revise content is already being put to use in hospital systems as a guide, making the language of informed consent more accessible. This capacity for summarization and explanation contributes to a broad need for language accessibility, both in terms of translation and in terms of simplification. Near-future use may include the generation of images, diagrams, and videos for use as decision aids."
"Proxies, or “those who are most likely to understand the  subject's situation and to act in that person's best interest,” are an important factor in decisions made by and for people without capacity for self-determination, where mental faculty is either diminished, developing, or in decline. Proxies carry the legal authority to represent, to speak for or act on behalf of."
"Where should AI be situated in supporting informed consent? As go-between and guide, between patient and information, or between patient-as-individual and patient-as-data? Or as a proxy: for patient, caregiver, or health care professional?"
…to shared decision making
"Informed consent is a legal concept that requires information to be provided before consent can be made. Articulations of the concept emphasize the importance of autonomy and self-determination. However, problems with poorly implemented consent frameworks lead to a slippage between consent and compliance, and a failure to support patient self-determination."
"Informed consent mechanisms, often lacking specificity, “tend to be generic, containing information intended to protect the physician or hospital from litigation.” Compliance-centered methods that privilege the transfer of information as material, rather than aiding in the process of comprehension, have been described as the “banking” model of education in Paulo Freire’s Pedagogy of the Oppressed, or as a “container” for the passing of information in the bioethics framework provided by Manson and O’Neill. These models are critiqued for their contribution to flawed, inefficient, and misleading exchanges of information. By extension, exchanges premised on these models do not foster safe disclosure and participation, but reinforce cultures of dominance, undermine patient-centered outcomes, and short-circuit processes of inquiry."
"Shared decision making, on the other hand, is an ethical move that recognizes “the need to support autonomy by building good relationships, respecting both individual competence and interdependence on others.” As a result, it has been shown to lead to measurable knowledge gains by patients, increased confidence in decisions, and more active patient involvement."
"The choice to enter into a shared decision making process is situational: higher risk decisions require a focus on information; lower certainty outcomes require a focus on  the decision making process. Nevertheless, the emergence of shared decision making seeks to support full autonomy by balancing the right to self-determination with the ethical principle of relational autonomy, which holds that “our decisions will always relate to interpersonal relationships and mutual dependencies.” As an application of relational autonomy, shared decision making sheds light on the numerous relationships that contribute to clinical decision making, including what patient and provider bring as individuals, together with the array of technical, social, and economic factors that define clinical practice."
"“As best practice” shared decision making “validates, augments, and enriches the process of informed consent by emphasizing patients’ understanding and prioritizing of different medical interventions in light of their own values and lived experiences.” Shared decision making, as it has been defined by numerous sources, is “a process by which patients and providers consider outcome probabilities and patient preferences and reach a health care decision based on mutual agreement.” Shared decision making builds on and with informed consent. It is a collaborative process between healthcare providers and patients. It requires a supportive and responsive environment on the part of the clinician, and free and open disclosure of values, preferences and expectations on the part of the patient."
"The introduction of AI technologies into medical data practices further erodes the stability of autonomy-based interpretations of informed consent, both positively and negatively."
"Researchers and patient advocates alike have positively evaluated the use of generative AI to augment informed consent and decision support—particularly for its summarization and explanation functionality. However, induced belief revision, as a tendency to defer to automated or AI-assisted analysis over intuition, tacit knowledge, and traditional clinical measures, is a cautionary factor contributing to the need for trust, accountability, and agency to be shared between patients and providers."
"In December 2023, the Department of Health and Human Services adopted the HTI-1 Final Rule (89 FR 1192). The stated goal of this legislation was to implement requirements already proposed in the 21st Century Cures Act (85 FR 25642) for the interoperability and transparency of AI-based healthcare technologies."
"Reading these two pieces of legislation together, it can seem as if interoperability and transparency are the same thing. Both require the safe disclosure—of data, protocols, methods—and means of access to sensitive health information, efficiently achieved through the design and maintenance of a new standard application programming interface, or API. An API is a set of rules for how different computer programs should communicate with one another. The rules of an API describe a structure for making requests and responses, determining a program’s capacity for interoperability with other programs. APIs shape what is possible to be done with information that moves between technical systems. In this sense, the most direct beneficiaries of interoperability and transparency, when applied to health technology, are other pieces of health technology."
"The HTI-1 Final Rule sets guidelines for, among other things, the use of predictive decision support interventions (DSIs). Predictive DSIs, as defined by the legislation, are tools “that support decision-making by learning or deriving relationships to produce an output, rather than those that rely on pre-defined rules.” This includes both “technologies that require users' interpretation and action to implement as well as those that initiate patient management without user action”—that is, tools that provide insight or information to be acted on by humans; interactive, hands-on tools to be acted on together with AI; and automated processes that do not have a human in the loop."
"This broad, undifferentiated definition contrasts with how AI in medicine is characterized elsewhere.The American Medical Association Current Procedural Terminology’s AI Taxonomy makes a clear high-level distinction between assistive, augmentative, and fully automated technologies. The government rule addresses this call for specificity, and finds that “such constraints may unintentionally exclude relevant technology as it evolves and is applied to more use cases, humans interact with technology in more diverse ways, and societal views on the line between assistive and autonomous technologies shift.”"
"What are these decision aids that are expected to evolve, be applied to more use cases, that humans will interact with in more diverse ways?"
"Patient reported outcome measures (PROMs) are a key source for analysis that contributes to decision aids, showing how treatment, health status, and quality of life come together in meaningful ways. As discussed in chapter three (“The Validated Instrument”), it is expected that the application of AI tools to PROM data will greatly facilitate their use as ground truth for decision making processes."
"Decision aids are access tools, in that they “provide balanced, evidence-based information about treatment options and usually are easy to read, often with pictures and figures; some may include patient testimonials about different pathways.”"
"Patients with access to decision aids were found to have “had greater knowledge of the evidence, felt more clear about what mattered to them, had more accurate expectations about the risks and benefits, and participated more in the decision-making process.”"
Predictive DSIs offer a clear example of what is broadly known as automated decision making (ADM).
"Article 22 of the European Union’s General Data Protection Regulation, commonly known as GDPR, protects subjects from the effects of automated decision making as follows:"
"“The data subject shall have the right not to be subject to a decision based solely on automated processing, including profiling, which produces legal effects concerning him or her or similarly significantly affects him or her.”"
"A data subject, in this context, is explained as “one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identi­fication number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.”"
What Hito Steyerl refers to as patterns of life.
"Performative technologies, from The Coordinator to generative AI, enact what they describe, and create data subjects through repetition. The model trains you. The concern is that the outcome of these processes will impose coherence that is unrecognizable to us, patterns we can’t sense, and explanations whose logic we can’t reason for or against."
"Performance studies scholars Roberto Alonso Trillo and Marek Poliks, in the introduction to their co-edited collection of texts on performativity after AI, pose a set of framing questions: “Is artificial intelligence (AI) becoming more and more expressive, or is human thought adopting more and more structures from computation? What does it mean to perform oneself through AI, or to construct one’s subjectivity through AI”? Even if answers were available, the remainder is: can we still talk about meaning in the same way?"
"Incoherent, unexplainable and uninterpretable outcomes can’t be shared. Nor is their process to be shared in. These are symptoms of a black box."
"Black box is a term that “can refer to a recording device, like the data-monitoring systems in planes, trains, and cars. Or it can mean a system whose workings are mysterious; we can observe its inputs and outputs, but we cannot tell how one becomes the other.” A black box is something that is not open to interpretation."
"Media theorist Mark Andrejevic extends the black box metaphor, with its implicit focus on opacity, obscurity, and secrecy, to consider “actionable but non-sharable information:” practical insight, such as material used to support decision making, that is not shareable in the sense that it cannot be explained or interpreted."
"To put this thought in context, Andrejevic quotes literary theorist Paul Ricouer—I paraphrase here: a text, as an object of interpretation broadly defined, mediates between one reader and another, between readers and the world they occupy, and between readers and their interior selves. Interpretation is a kind of sharing out of the text’s meaningfulness across all these mediated relationships. “The black box, by contrast,” writes Andrejevic, “replaces sharing with operationalism: the goal is not to tell or to explain, but to form a link in a process of decision or classification.”"
"This narrow focus on inputs and outputs encapsulates what Beatriz Fazi calls the “autonomy of automation,” or, freedom from human modes of abstraction and representation. This autonomy is most evident in the capacity of self-supervised AI models (exemplary black boxes) to produce internal representations “independently from the phenomenological or experiential ground of the human programmer.” When we think about how to use AI to support decision making, it is important to remember that the basis for this support is fundamentally different from human thought and experience."
"However, this difference is non-separable. We encounter black box systems as hybrids of automation, abstraction, and storytelling, where “the role of narrative is inseparable from the call for transparency.” Narrative makes systems legible, and this is unavoidable, even if this narrative is about illegibility."
"As with analysis, always return to a situated perspective:"
* Who poses the questions?
* Whose well-being is at stake?
* What lived experience is used to frame decisions and reactions?
* Whose imaginary is drawing the field of decisions?
Compression as Explanation
"“The manner and context in which information is conveyed is as important as the information itself  It is necessary to adapt the presentation of the information to the subject's capacities.”"
What is information?
"It is different from raw data, and it is separate from the way data can be modeled. Information, as defined by computer scientist Marcia Bates, consists of all the instances where people interact with their environment in such a way that it leaves some impression on them. Information is found in the interactions that change one’s knowledge. As Bates describes: “these impressions can include the emotional changes that result from reading a novel or learning that one’s friend is ill. These changes can also reflect complex interactions where information combines with preexisting knowledge to make new understandings.” This definition of information reflects a view that is centered on the people who seek out and use it, rather than the systems that organize, preserve, and make information available."
What do people need from information?
"Brenda Dervin defined information needs in terms of sense-making: A person, in their time and place, needs to make sense. The sense they need to make is for their own world, their time and place. To do this, they need to inform themselves constantly. Their need for information is oriented by questions that deal with the here and now of the world they see themselves as being in, the places they come from, and the places they see themselves going to. Information needs are always situated, they arise in the shape of questions about the conditions of one’s life. As Dervin articulates: “Information needs are always personalized, as there is no other way for them to be; information seeking and use can be predicted more powerfully by knowing the kind of situations [people] are in rather than knowing their personality or demographic attributes; people seek information when their life situations are such that their old sense has run out; people are in charge of how they use the information they attend to.”"
How do people behave with information?
"Sense-making is one kind of information behavior. As with other kinds of behavior, information behavior is contextual, it involves some motivating factor, or objective: “People are trying to solve problems in their lives, not ‘seek information’.” Information behavior, as a broadly descriptive term, addresses why we choose to seek out information, what we (believe we) need from information, what we do with what we find, and what kinds of explanations we find useful."
"Information behavior is not always a process of careful assembly and consideration. In the particular case of information seeking under threat, awareness of needs, motivations, and contextual support may shatter as a person copes with the dissonance of too much information. In seeking to understand this coping response, information seeking under threat has been shown to produce either active, passive, or avoidant behaviors, characterized along the dimensional axis of monitoring or blunting, heightened and continuous seeking out of information, or refusal, closing off to certain forms of information, and seeking distraction."
What happens when a patient researches their own condition?
"Patients’ access to their own health records is a protected right under HIPAA (1996). The HITECH act (2009) moved this access into electronic health records (EHR), software-based patient portals and apps. The 21st Century Cures Act (2016) established this right as an obligation for care providers to not withhold their patients’ data. By 2021, the 21st Century Cures Act Final Rule further refined the legal requirement of providing “the immediate electronic availability of test results to patients, likely empowering them to better manage their health. Concerns remain about unintended effects of releasing abnormal test results to patients.”"
How do patients think about having access to their own health information?
"In multisite and international studies, patients tend to agree they prefer to have immediate access to their health information, even when that information is provided without adequate context or explanation. Patients surveyed also tend to agree that improved access to their own health information improves, in turn, their communication with health care providers. It is not directly evident from these studies that the information provides content for this communication (that it is the subject matter of the improved communication) or that it directly informs shared decision making."
"In a systematic review of how patients’ respond to having immediate access to their own electronic health records (EHR), benefits were found ranging from reduced anxiety, better doctor–patient relationship, increased awareness of changing health status, adherence to medication, and improved patient outcomes. Patients self-reported better engagement in terms of self-management of symptoms, and increased knowledge. Concerns were found to be focused on security, privacy, and increased anxiety."
"Across the board, increased access to one’s health information was shown to produce increased patient engagement, confidence in self-management of symptoms, health literacy, and informed participation in shared decision making. It is hoped that more transparent electronic health records will be taken up as a priority of healthcare technology."
"How does information behavior affect how we disclose, answer, make decisions, and navigate our own legibility?"
"Elfreda Chatman, writing in The Impoverished Life-World of Outsiders, traces how flows of information can break down, contributing to a power gradient that she names information poverty. In this schema, knowledge falls into insider and outsider categories wherever trust is at a minimum, and vulnerability—sense of personal risk—is at a maximum. While Chatman withholds decision on the question of whether one needs to be an insider to understand the lived experiences of insiders, she traces the effects of this distinction through information behaviors such as secrecy and deception (preferring not to disclose, or providing false disclosure), as well as attitudes about what qualifies as relevant information (information needs), and what resources are shared across the insider / outsider boundary."
"It is easy for me to read Chatman’s idea of information poverty in terms of the experience of illness—how patients inform themselves, and how patients relate to their own data. As artist Carolyn Lazard details in their illness narrative How to Be a Person in the Age of Autoimmunity, the insider information of other patients carries value that the objective knowledge of outsiders lacks: “to listen to the suggestions of people who actually lived with the disease” rather than receive “advice from those who merely studied it.” Significantly, maybe, this shift in listening accompanies not only a sense of mistrust and uncertain relevance in regard to medical knowledge, but also a sense of narrative incoherence, in that “these kinds of experiences are difficult to narrativize. There is no story arc.”"
"While Chatman describes information poverty in terms of how information is sought out, used, and shared within groups, Aimé Césaire names a wider failure of sociotechnical imagination to contend with incoherence as “impoverished knowledge.” Césaire proposes that poetry, and poetic knowledge, fill the gaps: “Scientific truth has as its sign coherence and efficacity. Poetic truth has as its sign beauty,” he proposes. “What presides over the poem is not the most lucid intelligence, or the most acute sensibility, but an entire experience.”"
"Césaire’s notion of poetic knowledge travels well, as a means of “working on and against” sociotechnical systems, in the act of disidentification, in José Esteban Muñoz’s formulation. For both insider and outsider positions, patients and researchers, encounters with new technology produces multiple instances of disidentification, repurposing, and relationality: “studying information systems in isolation and not as part of broader social constellations misses the nuance of how people negotiate, resist, and create new ways of interacting with technology.”"
"Analyses of “crip legibility”, or the methods with which disabled people interact with, relate to, and slip between legible categories, as a form of information expertise, are crucial to re-imagining the future of health information systems. The call has been issued for “greater acknowledgement of the lived experiences and material design practices of disabled people,” holding that “the lived experience of disability, and the shared experience of disability community creates specific expertise and knowledge that informs technoscientific practices.”"
"“What is lost in the search for perfect explainability?”"
"Nora N. Khan poses this rhetorical question in the 2022 compendium Mirror Stage: Between Computability and its Opposite. In the context of AI, explainability, as a summary or high level overview of the processes and justifications used (e.g. why did you do that), is distinguished in common use from interpretation (e.g. how did you do that). Something can be explained even if a low level examination of the process is not accessible."
"Explainability is widely held up as a guideline for the development of ethical AI, particularly when the technology is used with sensitive data, vulnerable populations, and in decision making processes that have tangible effects on people’s lives. Healthcare is a prime example of this, where a right to justification is placed alongside non-discrimination as a core aspect of fairness."
"However, explainability, as policy and as a critical tool, has its discontents. Unlike interpretation, which operates reflexively across incommensurable differences, explainability relies on sometimes clumsy metaphors and re-framings to produce a common legibility around reasons. We bring what we cannot understand into our own world: “we say that a computing machine ‘sees’, ‘listens’ or ‘thinks’, just as we say that an aeroplane ‘flies’ despite our awareness that an aircraft and a bird take flight in profoundly different ways.”"
"These metaphors shape what we are able to imagine about the processes at work, limit the scope of our understanding to what is already familiar, and obscure other important factors and conditions. We don’t learn from these explanations alone. As Khan puts it: “There are vital ways to map and narrate and explain the world outside of the limits of language”. AI should be, in addition to a translator and summarizer, a troubling agent, bringing friction to decisions. providing variations, expanding the terms and modes of a search. A wider scope, never a narrowing. Have you considered this another way?"
"For healthcare providers, the failure to recognize, symbolize, and reflect on the consequences of the emotions they experience in clinical encounters is shown to impede or adversely affect patient care. This is to say, when information seeking is an interpersonal activity, such as in shared decision making, emotion and affect change how information is used, sought out, and shared. Recognizing—naming—these changes is an important way of supporting clinical processes."
How can we ask better questions?
"In advising clinicians on how to prepare for conversations about palliative care in oncology, Back et al. offer a quick litany of questions, conversation starters:"
(1) What is happening?
(2) How do you (and I) feel?
(3) What is important?
"These subtext of these three elements—that we are in a process that is unfolding; that we should recognize the emotions, shared or differing, that we are experiencing, as information; and that there is key information, requiring decision or action—are critical to how information works in the clinic."
"The Common Rule explains the importance of specificity and formulation of key information, to help make comprehension easier:"
"“Informed consent must begin with a concise and focused presentation of the key information that is most likely to assist a prospective subject or legally authorized representative in understanding the reasons why one might or might not want to participate in the research. This part of the informed consent must be organized and presented in a way that facilitates comprehension.”"
"In terms of representation, compression is the process of making a simpler or more lightweight representation from an original version by focusing only on what is considered most meaningful about the original—the key information. Compression is a fundamental process in any tool that relies on digital representation, including AI. Conceptually, compression can serve as a metaphor for any simplified communication of complex reality: thought into language, an explanation, a diagram, etc. A lossy compression is created, in part, by removing information that is not deemed meaningful, such that the reconstituted copy has lost some aspect of the original. This loss is accounted for by processes of normalization, deciding what the standard of meaningfulness should be, and conforming to that. What escapes the norm is held to be uncertain, irrelevant, and costly, a threat. Explanation is lossy compression, it normalizes the material being explained, the means of explanation, and the one being explained to."
"Gayatri Spivak, addressing the symposium “Explanation and Culture” at the University of Southern California's Center for the Humanities in 1979, turned her talk on the symposium itself, in a classic deconstructive turn, pointing to “the prohibition of marginality that is implicit in the production of any explanation.”"
"Explanation, as compression, works to eliminate uncertainty."
"Spivak: “We take the explanations we produce to be the grounds of our own action; they are endowed with coherence in terms of our explanation of a self.”"
"This cautionary critique—not to mistake the explanation for ground truth—can be urgently applied to the use of AI, particularly large language models (LLMs), whose appetite for new data has led to widespread use of synthetic data in the training process, especially as data sharing practices harden."
"Ground truth is what an explanation points to, in order to show with certainty that the arguments it makes are sound. Ground truth, to be legible within explanatory and predictive systems, is assembled through processes of identifying, labeling, classifying, ordering, and structuring. It can start with any data that we think of as true, to the extent that we want to build our tools, processes, and systems around it as an example of truth."
"Ground truth for shared decision making can originate with clinical observation and testing, caregiver input, patient-reported outcomes, as well as other forms of patient-generated health data including passively collected data from wearable sensors, apps, and fitness trackers."
"Where there are discrepancies in health literacy, as with patients confronted with the need to make sense of technical and legal language that dominate informed consent material, access tools such as plain language or easy read translations are one starting point."
"Where self-reporting or shared decision making present difficulty for patients with disabilities and / or high cognitive load, there are a range of strategies to be considered, from changing the question, how or when it is asked, to more radical departures from systematic norms, such as involving proxies or interpreters, or adding context from passively collected data."
"Disabled people experience negative health outcomes disproportionately, but evidence shows that placing focus on how information is gathered, shared, and used could lead to greater health equity. This means: (1) collecting information on the context that affects a person’s experience of function; (2) representing individual patients’ voices, perspectives, and goals in the electronic health record; and (3) standardizing how observations of function and context are recorded in the electronic health record."
"Overall, this strategy orients towards two endpoints: one addresses structure, by changing how standardized tools such as electronic health records can accommodate a wider range of information and context. The other addresses engagement, and respect for patients’ contribution: to collect and analyze patient-reported descriptions of their own personal perceptions and goals. Learn to ask."
"The goal of all of this, and how shared decision making is supported, is to build knowledge about what is meaningful to patients in terms of the care they receive. How it translates to their real life. The name for this is minimal clinically important difference (MCID): what is the smallest intervention that could be taken to produce a meaningful positive effect, from the patient’s perspective?"
Autonomy-in-Relation:
"The promise and concern around AI as a predictive tool in healthcare has been well established, in terms of its capacity for accuracy, as well as its utility in summary and translation tasks."
"What remains under-studied are the changes that AI brings about vis-à-vis new formations of autonomy, expertise, and ground truth. To this point, we should begin by looking at existing models in healthcare that foreground interdependency, intersubjectivity, and relationality."
"The biopsychosocial model for pain management was originally developed in the mid-1970s, a time when “science itself was evolving from an exclusively analytic, reductionistic, and specialized endeavor to become more contextual and cross-disciplinary.”"
"The original, interdisciplinary findings that led to the biopsychosocial model found that in order “to understand and respond adequately to patients’ suffering—and to give them a sense of being understood—clinicians must attend simultaneously to the biological, psychological, and social dimensions of illness.”"
"Studying the impact of the biopsychosocial model twenty-five years into its widespread adoption for pain management, Borrel-Carrió et al. find an explicit link to information behavior, and a more nuanced understanding of how autonomy works in clinical decision making:"
"“Most patients desire more information from their physicians, fewer desire direct participation in clinical decisions, and very few want to make important decisions without the physician’s advice and consultation with their family members. This does not mean that patients wish to be passive, even the seriously ill and the elderly. In some cases, however, clinicians unwittingly impose autonomy on patients. Making a reluctant patient assume too much of the burden of knowledge about an illness and decision making, without the advice from the physician and support from his or her family, can leave the patient feeling abandoned and deprived of the physician’s judgment and expertise. The ideal, then, might be ‘autonomy in relation’—an informed choice supported by a caring relationship.”"
"The caring relationships that support patients’ choices, indeed, that support patients’ sense of self, effectively blur normative distinctions between categories. As psychologist George Engel wrote in the original publication describing the model: “the boundaries between health and disease, between well and sick, are far from clear and never will be clear, for they are diffused by cultural, social, and psychological considerations.”"
"More recent reappraisals of the biopsychosocial model find that this emphasis in the original call for a blurring of analysis, cutting across modalities and methodologies, is still largely out of reach: how can the “fuzzy thinking” around social and environmental factors be held alongside the pathology of physiological mechanisms? New, interdisciplinary research methods, alongside both clinical training and community health education are seen as ways to broaden understanding and expectations of how the pain is socially, environmentally, psychologically, and biologically situated."
"In 1963, Michel Foucault characterized the emergence of clinical medicine over the course of the 19th century as “that opening up of the concrete individual, for the first time in Western history, to the language of rationality, that major event in the relationship of [people] to [themselves] and of language to things.”"
"Where Foucault situates his analysis in the space of the clinic, describing the massive shift in knowledge production that modern medical practice initiated, poet Anne Boyer examines the contemporary emergence of a different paradigm, in a different kind of space: “The pavilion, on the other hand, is a tangle of directions. Money and mystification, not knowledge or ignorance, are its cardinal points.” The cancer pavilion, where we go for treatment, enacts the allegory of the pavilion as a “temporary and luxurious architecture erected for the purposes of the powerful, adjacent to something else—in cancer’s case, adjacent to all the rest of what we call life.”"
"What happens in the pavilion, adjacent to life, that is equivalent to the “opening up” in the relationship of people to themselves, and of language to things?"
"Patients are engaged in the measurement of their own quality of life. Opening up, in time, through actions of self-evaluation, self-reflection, self-disclosure, self-reporting."
"Who is the self who evaluates, reflects, discloses, reports?"
"The concept of intersubjectivity holds that subjectivity needs the recognition of another: individual or collective, or through the relational networks of community: “Identification is the detour through the other that defines a self.” Intersubjectivity emphasizes the way perceptions, experiences, and interpretations are shaped by interactions with others."
"What happens when this recognition is automated, or technologically mediated?"
"At the center is likely a screen. In Crampton et al.’s scoping review of how health information technology affects patient-provider relationships, the screen is shown as a shared artifact that holds, interrupts, and redirects attention:"
"“Clinician gaze at the screen was significantly associated with the patient’s gaze at the screen. Further analysis showed that clinician-initiated gaze at the screen, the patient, or other objects were significantly followed by the patients, resulting in a conjugate gaze [looking at the same thing]. In contrast, patient-initiated gaze patterns were not always followed by clinicians. The authors identified significant patterns of the patient’s gaze at the clinician followed by the clinician’s gaze at the monitor and of the patient’s gaze at the screen followed by the clinician’s gaze at the patient.”"
"Are patient and doctor speaking to one-another or are they speaking about, around, through, something external—diagnosis, disease, impairment, treatment, data? If they are speaking at all—studies of EHR use in the exam room show that interaction with electronic health records often interrupt visual attention and produce prolonged periods of undifferentiated, unproductive, inattentive silence."
"Where the technology is seen as having agential input on the clinical encounter, it is often felt to be “a manifestation of external policies” at the “expense of narrative information, and sometimes even of patient agenda.”"
"We recognize one another through intermediary objects. While much of the research literature has applauded the value of new technological tools in providing easy contact between patient and provider, the quality of contact, the effect of reinforcement feedback, and the responsiveness of clinicians are not evaluated."
"What is the effect of a survey, a test, a portal message that is not discussed?"
From pattern discrimination to pattern recognition
"“We do not look like people: we look like people with cancer . We resemble a disease before we resemble ourselves.”"
Recognition needs repetition.
"Gathering patients’ experience into an object of knowledge shapes the topos of cancer life, where one learns, and speaks, both anonymously and intimately, first as data, then as a pattern of life."
"Nomina sunt numina [names are divine], can be interpreted as, for instance: there is a perfect correspondence between a word and the thing it names, or that to name something is to bring it into existence, or that language is more-than-human."
"Winograd and Flores: “The need for continued mutual recognition of commitment plays the role analogous to the demands of autopoiesis in selecting among possible sequences of behaviors” [italics mine]. The reciprocal actions of commitment and recognition shape behavior, ensuring that all behavior is directed towards the expression of coherent patterns of life."
"Language, as Winograd and Flores proposed, and contemporary natural language processing techniques uphold, is not an index of objective meanings, but a chain of commitments in a ‘consensual domain.’ Biologist and philosopher Kriti Sharma further unpacks the ubiquitous function of commitment, considering a shift towards modeling ecologies in terms of  “interdependence:” first, “a shift from considering things in isolation to considering things in interaction,” then, a shift “from considering things in interaction to considering things as mutually constituted, that is, viewing things as existing at all only due to their dependence on other things.”"
"This view assumes a capacity to accept the world as contingent rather than conventional: things are the way they are not because of arbitrary choices, or even the imposition of singular value systems, but because of dynamic, intricate, highly interdependent and highly ordered processes—from genomics to climate to toxicity to biochemistry to culture to language—that inhere in objects. It is the interdependence of these processes that give rise to the term “flower” over and over again, and precisely what makes flowers appear so obvious, vivid, and stable as objects."
"Again, Winograd and Flores: “Language does not convey information. It evokes an understanding, or ‘listening,’ which is an interaction between what was said and the preunderstanding already present in the listener” [italics mine]."
"What does this preunderstanding consist of, and why is it there?"
"Preunderstanding, or prior knowledge is bias. A heightened sense of where to look first when searching for something. It can be imposed (purposefully or not) by the model’s designers, it can be in the training data, in the self-supervised tuning of the model’s parameters as it learns, or in the interpretation of the model’s output. It is indispensable to the functionality of AI models."
"In Bayesian statistics, a prior probability is used to represent initial beliefs about something uncertain. This is bias that helps situate the learning process: a first guess, usually based on some past experience about what is likely. Priors are what we knew before, all that we bring to the question at hand."
"As AI works to balance specificity with generalizability, priors help define a generalized shape, and the boundaries of the search space. Informative priors shed light on the task under consideration, uninformative priors provide a general shape to the expected outcome, although without any specificity. Regularization priors—e.g. Laplace, Gaussian (normal), Lasso, Ridge—keep the model from overfitting, and help it to generalize to new data. Constraints are added to keep the parameters from becoming too complex, or falling too far outside of a specific pattern of distribution."
AI researcher Francois Chollet’s theorizes how human priors affect the design and development of AI:
"“we are born with priors about ourselves, about the world, and about how to learn  These priors are not a limitation to our generalization capabilities; to the contrary, they are their source  To learn from data, one must make assumptions about it—the nature and structure of the innate assumptions made by the human mind are precisely what confers to it its powerful learning abilities.”"
"Chollet provides this schema to illustrate how human priors approximate generalizability, as it is considered in the design of AI systems: Low-level priors tell us about the structure of our own sensorimotor space, what we feel and move with. Meta-learning priors determine how we learn: assumptions about the structure of knowledge and objects, and ideas about causality and continuity. High-level knowledge priors are our notions about how to orient ourselves and navigate through spaces, our social intuition, and sense of what it means to have goals, values, and private thoughts. At every level, prior knowledge prepares us to sense patterns, make choices, and understand meaning, particularly when we don’t know exactly what we’re looking for."
"In terms of bringing patient-generated health data into clinical practice, automation can expand access and improve patient outcomes, but also raises concerns about data privacy and the potential for algorithmic bias to adversely affect patient care decisions. With this risk in mind, researchers point to the need for participation in patient reported outcome assessment processes to be inclusive and equitable."
"The use of predictive tools to regulate, pathologize, manage, and draw knowledge from people’s lives is concerning “not because it creates new inequities, but because it has the power to cloak and amplify existing ones,” notes artist and technologist Mimi Ọnụọha."
"Ọnụọha characterizes this power as algorithmic violence, encapsulating “the violence that an algorithm or automated decision-making system inflicts by preventing people from meeting their basic needs.” Examples of algorithmic violence “occupy their own sort of authority  rooted in rationality, facts, and data, even as they obscure all of these things”"
"“Machine prediction of social behaviour” argues Abeba Birhane, “is not only erroneous but also presents real harm to those at the margins of society.” In their paper “The Impossibility of Automating Ambiguity”, Birhane exposes a fundamental factor in this failure as the under-theorized reliance on accuracy as a measure of AI effectiveness."
"Accuracy, unlike precision (consistency), relies on prior knowledge: how close a prediction is to a known measurement, ground truth. Automating ambiguity would require optimizing for something other than accuracy."
"Wendy Hui Kyun Chun, in her book Discriminating Data, qualifies the link between discrimination and recognition in terms of difference (discrimination) and similarity (recognition). To assess a recognition as ‘accurate’ requires precognition: it involves evaluating various criteria in terms of properties we already know how to discriminate between. “Classification systems require the prior construction or discovery of ‘invariant’ features, on the basis of which they assign and reduce objects.” In computer science “pattern discrimination” describes the “imposition of identity on input data, in order to filter (i.e., to discriminate) information from it.” Recognition, on the other hand, is a correlated assembly of shared context, shared features, and shared relations. It is a form of identification that has been reciprocated."
"How recognition is automated:"
"1. Do I recognize you?"
"2. How am I to believe you?"
"To the error alert which reads ‘We don’t recognize this device’: I understand you to mean that you don’t store your data on my device (in the form of an authenticating or tracking ‘cookie’). Data is a mark and a token, making recognition possible. The token indicates consent (an agreement to your terms). You don’t recognize me (my device) because I have not provided consent to be recognizable (to store data / a cookie). This is to say: consent requires recognition, as much as recognition requires consent."
"And for authentication: please state your name, your date of birth, and in your own words, please describe what brings you here today?"
Recognition needs repetition.
Minimal Assumptions
"Alison Kafer, in her close reading of the language used by Margaret Price to introduce difficult material—a ‘trigger warning’—articulates how such warnings are “a matter of access rather than avoidance.” They encourage listeners to “think about what kinds of support they might need in order to engage with material” as well as describing alternate ways of experiencing the content, such as through a printed page, with the help of an interpreter, or asynchronously, in another time and place. “In this framing,” Kafer finds, “the trigger warning is about making the content of the talk accessible to anyone who wants it; quite simply, it’s about accessing the material.”"
"Kafer builds on this example to consider not just the ways access is instituted through gestures like Price’s introduction, but how access can be understood through the lens of trigger warnings, as a preparation of a space or process, and as “part of a larger complex of practices designed to de-privatize and [collectivize] healing.”"
"Given that “access addresses not only how a space is designed but also what happens within it,” how can processes such as consent and safe disclosure be approached as design challenges?"
"The case of consent in passive data collection from apps, wearables, fitness trackers, etc. (referred to from the perspective of human-computer interaction (HCI) as examples of ubiquitous computing), reveals the complexities of approaching consent, and decision-making in general, as an ongoing or ambient process rather than an event. This is particularly acute for the case of persuasive design, or devices that aim to change user behavior."
"Ewa Luger et al. address the ways in which ubiquitous computing complicates the performance of consent requirements, such as end user license agreements, having “decoupled users from devices, presenting no clear moment for consent to occur.”"
"Josef Nguyen and Bonnie Ruberg have highlighted approaches to consent as a design challenge for games in particular, and human-computer interaction (HCI) in general, through the lens of “consent mechanics,” as “a set of unique difficulties and potential solutions surrounding the question of how to design meaningful and ethical interactive opportunities for technology users to negotiate consent,” emphasizing the process and nuance of consent rather than one-time compliance-driven interactions."
"Yolande Strengers et al. apply the T.E.A.S.E. framework for consent processes developed out of BDSM communities to “emerging technologies that enable interactions that act on, act with, or act like bodies,” recognizing “the ways in which bodies (artificial and human) are entwined with processes of consent, and how consent is situated in physical and virtual space and time within specific contexts and experiences.” This framework establishes consent as an ongoing, emergent process that is heavily dependent on transparent, mutual communication, where T.E.A.S.E. stands for: Traffic lights (ways to signal “stop”, “slow down” and “continue,” even nonverbally); Establish ongoing dialogue (make the process interpretable); Aftercare (or, analysis of limits, expectations, and desires); Safewords (the capacity to immediately and easily withdraw from actions in mid-process); and Explicate soft/hard limits (empower participants to recognize their own changing attitudes in mid-process by setting and revising a spectrum of limits)."
"Often, the mechanics of consent for games are implied through a legal metaphor, imagining a game as a magic circle. In this view, real legal limits are withheld in the virtual world of games, and what happens in the course of play is considered to be within the scope of consent of the players. Noting that the magic circle metaphor is used to protect “spaces for play, tools for narrative, and the chance to build a new life,” legal scholar Joshua Fairfield argues for greater attention to consent mechanics and community self-regulation in games such that “virtual worlds may be able to generate community norms usable by real-world courts as a source of legal rules”."
"Una Lee and Dann Toliver’s Building Consentful Tech project, while foregrounding the value of autonomy in both bodily and datafied interactions, suggests adapting guidelines from community accountability practices to accommodate the distributed nature of digital bodies. In drawing a qualified equivalency between physical notions of consent and data ethics, Lee and Toliver invite further articulation of how the design of consent-centered technological tools and platforms understands individual autonomy in relation to notions of decentralization and interdependence."
"Disability rights activist Mia Mingus describes access intimacy alongside related concepts of “physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy” as “that elusive, hard to describe feeling when someone else ‘gets’ your access needs.  The kind of eerie comfort that your disabled self feels with someone on a purely access level.  Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years.  It could also be the way your body relaxes and opens up with someone when all your access needs are being met.”"
"Mingus goes on to distinguish access intimacy from compulsory or compliance-oriented access: “Access intimacy is not just the action of access or “helping” someone.  We have all experienced access that has left us feeling like a burden, violated or just plain shitty.  Many of us have experienced obligatory access where there is no intimacy, just a stoic counting down of the seconds until it is over.“"
"Access intimacy can be minimal, silent, passive: “sometimes it is someone just sitting and holding your hand while you both stare back at an inaccessible world.”"
"Inspired and informed by Mingus’s naming of the concept of access intimacy, I propose a set minimal assumptions to identify the operational degrees of comfort and consent that shape how we share information:"
"1. Standing back, giving space: Listening, speaking, appearing to all who witness. At a distance from all others. I experience a low level of detail, only indirect, relayed interactions, ephemeral messages; symbolic, not sensory representations."
"2. Witnessing and being witnessed: Listening, speaking, appearing to you. Not others. Those I consent to hear may speak to me. I may speak to those who consent to listen. I will not hear others when they speak, others will not hear me. I experience a higher level of detail, both sensory and symbolic representations. Direct and indirect interaction at a distance, persistent messages. Waiting."
"3. Nearby, standing with or beside: Listening, speaking, appearing with a group. Anything any of us can hear, we all can hear. Any message appears to be from all of us, together. We appear as a group formed of individuals. Only direct Interaction, at a distance or close. Promising to wait."
"4. In contact, touching: Haptic, textural feedback between us. Ephemeral messages. I may choose to include tone indicators with any message or action. I can filter, or translate, tone indicators added by others. Being patient."
"5. Holding, supporting: listening, speaking, appearing through you. I appear as indistinguishable from you. I only hear what you hear. You speak for me. Anticipation."
"6. Falling together: feeding back; illegibility, only close interaction, sensory rather than symbolic representation. Everything indicates its tone. Listening, speaking, appearing as you. You and I appear as indistinguishable from each other. You and I happen to be in the right place at the right time."
These fragile chains persist through affective stances:
"* Knowing (bias, belief, preference, embodiment)"
* Listening (durational attunement to relation and environment at multiple scales)
* Being careful (building iteratively and according to agreed-on protocols)
"* Being immediate (reinforcing learning, engagement, and position)"
* Being interpretive (recognizing the limits of shared meaning and what cannot be translated)
* Being intersubjective (the collective work of producing and managing viewpoints)
Synthesizing is a kind of listening.
"Computer scientists Chris Olah and Adam Jermyn, in arguing for more qualitative methods in the interpretation of AI models, name this the signal of structure: “any structure in one's qualitative observations which cannot be an artifact of measurement or have come from another source, but instead must reflect some kind of structure in the object of inquiry, even if we don't understand it.” What they are describing here is how recognition happens qualitatively. This is an approach that works on and alongside quantitative methods."
"Practiced skills of listening and eliciting are critical for qualitative research. In a review of research methods for developing patient reported outcome measures, Brédart et al. outline the various listening modes to be applied when formulating PROMs through an interview process:"
"* Active listening: Listen with attention to the interviewee's speech; participate actively, prompt with an openness to go further."
"* Attentive silences: Differentiate between heavy silence after an intrusive question, silence which allows one to take breath, silence to reflect upon the question, and silence in the rhythm of speech."
* Reflecting: Reformulate and reflect back what you hear; encourage further disclosure.
* Synthesizing: Check understanding of what you hear before moving to another topic; give the interviewee the opportunity to correct if there is misunderstanding; indicate that the interviewee's narrative has been heard.
"* Recognizing resistance: In face of avoidance or unauthentic testimony, reflect on what happens, underline that there is no right or wrong answer, revisit and rearticulate the aims of the research."
"Métis anthropologist and scholar of Indigenous studies Zoe Todd, in conversation with their collaborator, sound artist Am Kanngieser, describes the role of consent in environmental research, as an ongoing, continuous obligation to renew one’s relationship to the place of study. This relationship is maintained through an awareness of context and specificity: “we all listen from a particular place and that needs to be explicitly stated and that needs to be explicitly interrogated.” This cycle of stating and questioning fits with an understanding of consent as an ongoing obligation that requires “constant conversation” and “respect for protocols” that determine where permission needs to be sought, and what kinds of relations need to be built over time."
Can this continuous attention to building relations over time contribute to juridical applications of informed consent—particularly in regard to the importance of documenting consent?
"Sound artists and organizers Ultra-red define the term soundscape as an active transformation, an organization, of the field of sound."
"The soundscape is produced as a mutable subject of collective inquiry, the place (topos) where articulations of need, demand, and desire contribute to the process of shared decision-making. This is an important idea for community-centered research, where the needs, demands, and desires of both researchers and community representatives must be made clear, and continuously updated as they shape one another."
"Need, here, refers to the basic requirements or necessities that individuals or communities identify as essential. Demand is articulated when a need is expressed or called for, often in a more formal or organized manner. It represents a specific request or claim based on the identified needs."
"Desire, on the other hand, encompasses a deeper, often unconscious motivation that drives individuals or communities beyond their immediate needs and demands. It includes the emotional and subjective aspects that influence how needs and demands are perceived and acted upon."
"As described in Ultra-red’s methodology of Militant Sound Investigation, the soundscape becomes apparent, and is made accessible, by a disciplined and political act of deference, through listening."
"The first step, this political act of deference, sets the terms of a shared purpose and collective effort: “acknowledging an affiliation renders the first cut inscribed in the undifferentiated field of need, demand, desire.” The investigation proceeds to compose the soundscape through a series of articulations, where “each cut is an opportunity for differentiating, acknowledging, and organizing the field of sound.”"
"Listening, with the aid of technology (e.g. microphone, audio recorder, pen and paper), carries the “capacity to recall the investigators to silence” to “correct the tendency to fixate on demands that do not resonate with the curiosity, friendship, love” that hold the collective effort together."
"By actively listening within the soundscape, investigators come to understand how need, demand, and desire are interconnected, with demand being inclusive of both conscious articulations responding to needs and the indivisible remainder known as desire."
"For Am Kanngieser and others with auditory processing disorder, the field of sound is rendered as an undifferentiated object, equally present in its multiple facets: “Every sound that I hear is at the same level of importance. I don’t have a filter of a voice, or a wave, or a bird, or the wind, it’s all at the same level of significance.”"
"Instead of addressing a generic reader, investigator, or witness, can neurodiverse approaches to method be assumed? Would this alter prior notions of discipline, deference, and mutability within the listening field?"
Conclusion: The ends of care
"Hush now, don't explain"
* Beyond instrumentality
* Beyond causality
* Beyond traditional boundaries (in medicine and otherwise)
* The question of accessibility
* And the question of trust
"“The trust implicit in the virtuous practice of medicine demands that clinicians learn to reach beyond their own assumptions in order to hear and be affected by the details of the unfamiliar worlds of patients,” write Marina Tsaplina and Raymond Barfield, in their outline for the role of imagination in the practice of health humanities: “This demands acknowledging the vulnerability and variation of human bodies, including the clinician’s own, and training clinician imaginations to perceive the way structural foundations of health and biopolitical power shape embodied lives”. Care, the authors go on to articulate, should be oriented by both goals and processes. In the face of unknown changes produced by the introduction of new technologies such as AI, it is critical to reaffirm humane principles:"
"The fact of care is living in an entangled way, an agential commitment to interconnectedness."
"* Care forms relations, or maintains / reinforces existing relations"
"* Care sets boundaries, creating enclosures of protected space and time"
"* Care forms identities by naming ambiguities, becoming and inhabiting roles"
* Care sets commitments (priorities)
"* Care governs movement: speed, exchange, transfer"
"* Care is a protocol, it has an object: a way of acting-on, relating-to, being-with"
"Interdependence with technology and among people with different needs and situations gives rise to new forms of expertise and autonomy. What can and cannot be specified about these new forms?"
"“There are certain experiences that cannot be fully specified in a human society without destroying the basic individual structural plasticity needed for the establishment of consensual domains and the generation of language and, hence, for human creativity in general. Love is one of these experiences, and as long as [humanity] has a language  can become observers through the experience of love”."
"Then it’s love. Love as a process of becoming unbodied (Belcourt); love that always means nonsovereignty (Berlant); love that discriminates, separating like from other (Chun); the loving perception that comes from traveling between worlds (Lugones)."
"There is almost not an interval"
"on view august 17—september 8 2024"
"Human Resources LA (410 Cottage Home St. LA CA 90012)"
"Theresa Hak Kyung Cha “Mouth to Mouth” (1975) black and white video, sound"
"“People will never believe you are “without events.” And that is why decay is slow, and why it is not devastation.”"
"Intervals are what a threshold makes, a here and there, (held) in suspension, a distinction (telling the difference), undifferentiated (holding difference), without separation, a crossing, where limits meet, anticipation (a margin to move in), body horror (I’m an alien), reperforming events, switching (logic), binary, alternating, lenticular, talking back, the transformation of silence into language and action, some temporalities (for sure), stop motion, flicker, duration, bracketing, the suspension of judgment, the withholding of assent, the preconditions, the prior logic, intersection, coincidence, suture, stitch, montage, cut, rupture, glitch, break, gap, clearing, hesitation, some kinds of waiting, losing control, building community, falling in love, between thought and speech, between speech and act, between action and listening, between memory and futurity, between what’s in my head and what’s in yours, side by side, boundary objects, parallel selves, the fantasy of continuity, a movement between the pieces, fragments of actual energy, time away, life, a long take, notes in a chord, frames in a film, unnatural bridges. “Allegory, here, is material,” Ian White wrote: “An interval, occupied.”"
"“Intervals,” Trinh T. Minh-Ha observed, don’t “bring about any tremor like ‘passion,’ ‘death,’ or ‘love.’” It’s thanks to intervals, however, that “a direct relation is possible: a relation of infinity assumed in works that accept the risks of spacing and take in the field of free resonances—or, of indefinite substitutions within the closure of a finite work” (Trinh T. Minh-Ha “Beware of Wolf Intervals”)."
"A barely-perceptible interval is space enough for holding movement between pieces that have been cut apart or never really touched, whose relation is latent or obscured. We will approach ”intervals” as tainted binaries or boundaries: before and after, bodies and spaces, events and images, internal and external, spoken and thought, original and translation. Forms to explore include traveling in time, interpolating (imagined continuities), waiting (pausing, anticipating), transducing (moving across one medium into another), flickering, hovering over, pivoting on, or crossing of thresholds, pushing sequences out of order, ambivalence, and self-contradiction. Intervals show a special kind of coherence across duration, distance, or difference. Intervals are the mechanics of memory and representation, the choreographies of reconstruction, where fiction and testimony are glued together to assemble critical, speculative, fabulous histories."
"“There is almost not an interval. For a very long time everybody refuses and then almost without a pause almost everybody accepts. In the history of the refused  the rapidity of the change is always startling.”"
The whiplash of recognition!
Work:
"“Every illness is a musical problem” (Novalis)"
"“what it meant to be in narrative, to feel narrative gather in my body and feel it work to move out of my body” (gladman “untitled environments”)"
"“She opens the gap between signs and their referents to reveal modes of reading, seeing, and listening capable of attending to those losses.” (Lamm “mouth work” p. 175)"
Mladen dolar - voice as excess of speech (?)
"Larry rinder “the plurality of entrances”"
"Ludwig Wittgenstein's formulation, 'a picture held us captive. And we could not get outside of it, for it lay in our language, and language seemed to repeat it to us inexorably'"
"“A constellation of images and a set of visual experiences that create a frame of beholding that mirrors back an image of the self as an object that belongs to it.” (Lamm “mouth work” p.181)"
"“My thesis is that Blackness, dysfluency and music are forces that open time.” (Ellis “The Clearing” p.216)"
"“The contradiction of stuttering is that I'm both speaking and not speaking.” (Ellis 222)"
"“An indication that not everything has been captured” (philbrick) “friction inside the image” (Rawls)"
Glossary
Abduction
"The sustained and tentative work of making educated guesses. “Feedforward loopings” between observation and theory-making; thinking between the past, present and future. (See: Anticipation, Inference, Sampling)"
Accessibility
"Simply put, accessibility is an act of love., It can be thought of, together with disability, as a socially constructed fact (where access is impeded or assisted as a function of culture, convention, design, etc.), as compliance, a matter of juridical distinction (detailed in accessibility laws or guidelines, such as the Americans with Disabilities Act (ADA) or Occupational Safety and Health Administration standards (OSHA)), and as a political act of anticipating how best to accommodate diverse needs. (See: Accommodation, Compliance, Disability, Disability Justice, Impairment)"
Accommodation
"A specific change or modification made to an environment, policy, or procedure to ensure that individuals with impairment or disability can access the world. (See: Accessibility, Compliance, Disability, Disability Justice, Environment, Impairment)"
Accuracy
"How close a prediction is to a known measurement. (See: Ground Truth, Precision)"
Affect
"Flows of intensity between and among subjects and objects that precede, or result from, cognition, emotion, and expression."
Algorithmic Violence
"“The violence that an algorithm or automated decision-making system inflicts by preventing people from meeting their basic needs,” where violence refers not to physical brute force, but rather to prohibitive mechanisms or actions that negatively shape people’s experiences and opportunities."
Anamnesis
"ἀνάμνησις [a calling to mind, remembrance]. In medicine, a patient’s retelling, in their own words, of their medical history. Also referred to as recall retrospection. In the Platonic dialogue Meno (also Phaedo, and Phaedrus), a teacher asks questions to bring forth knowledge a student already has, as the practice of calling tacit, timeless knowledge to mind. In the Christian tradition, anamnesis figures centrally in the liturgy of eucharist: “τοῦτο ποιεῖτε εἰς τὴν ἐμὴν ἀνάμνησιν [do this in remembrance of me]” (Luke 22:19). (See: History (Hx), Life-Writing, Patient-Generated Health Data (PGHD), Poetics)"
Analysis
"Breaking something into pieces to learn about the patterns that form its identity. A method or set of methods that may be, in turn: reductive, revealing, relational, instrumental (as in, making and using instruments), embodied, troubling... “the entanglement of ideas and other materials” (Barad); a relay between totality and imagination (Glissant); “the intimacy of scrutiny” (Lorde).,, (See: Data, Imagination, Information, Instrument, Synthesis)"
Anticipation
"The “politics of temporality and affect,” concerned with the “margin of maneuverability” in which momentary possibilities are reconfigured. Preparing, optimizing, managing uncertainties. (See: Abduction, Analysis, Apparatus)"
Apparatus
"“A thing that lies in wait or in readiness for something,” per Vilém Flusser’s definition: a simulation of thought, a system or organizing principle that enables something to function. Theorized by Michel Foucault as dispositif, an apparatus holds the relationship between discursive (what is said) and non-discursive (what is unsaid) practices. Karen Barad’s philosophical framework of agential realism extends the concept of apparatus to stress the interconnectedness of observers, instruments, and objects or phenomena being studied, emphasizing the entanglement of human and non-human agencies in the construction of knowledge. (See: Discourse, Instrument, Model, Outcome, Simulation)"
Apperception
"Cognition and perception together—awareness of sensation, where data becomes information through active and subjective interpretation. (See: Data, Information, Interpretability, Listening, Patient-Reported Outcome (PRO), Self-report)"
Application programming interface (API)
"A set of rules for how different computer programs should communicate with one another. The rules of an API describe a structure for making requests and responses, determining a program’s capacity for interoperability with other programs (See: Software as a medical device (SaMD))"
Aporia
"A performative statement of doubt, uncertainty, or perplexity."
Artificial Intelligence (AI)
"Artificial Intelligence (AI) is a widely used term to describe any tool or system that simulates, augments, or automates the way people make sense of the world. Legally, AI has been defined in the US as"
"“A machine-based system that can, for a given set of human-defined objectives, make predictions, recommendations or decisions influencing real or virtual environments. Artificial intelligence systems use machine and human-based inputs to- (A) perceive real and virtual environments; (B) abstract such perceptions into models through analysis in an automated manner; and (C) use model inference to formulate options for information or action.”"
"AI encompasses deep learning as well as machine learning, and some, but not all, natural language processing and robotics (embodied AI). In the present historical moment a secondary definition is ascendant, in which AI refers broadly to any technology for predictive pattern matching. In its contemporary use of the term, AI is more likely to refer to generative, unsupervised, generalizable, and stochastic processes of analysis and resynthesis that can be applied across modalities, rather than structured simulations optimized for singular, specific tasks. (See: Apperception, Algorithmic Violence, Bias, Diffusion, Embedding, Latent Space, Machine Learning, Inference, Large Language Model (LLM), Model, Variational Autoencoder (VAE))"
Attention
"Focusing on some information while ignoring the rest. Attention is a fundamental cognitive process involved in perception, learning, memory, and decision-making. (See: Attunement, Noise, Signal, Transformer, Waste)"
Attunement
"Affective alignment between individuals. Attunement is a relational foundation for trust and understanding, characterized by attention to cues (verbal and non-verbal, body language, tone, expression, etc) and the ability to perceive and understand one’s own emotions and those of others. (See: Affect, Attention, Coherent, Consent, Diffusion, Listening, Resonance, Soundscape)"
Autoencoder
(See: Variational Autoencoder (VAE))
Automated Decision-Making (ADM)
"Decisions made on the basis of automated processes, including the derivation of profiles based on perceived demographic or behavioral patterns related to a subject. ADM is restricted under various legal frameworks: European Union law preserves the rights of individuals to seek human intervention in decisions, while US law offers specific prohibitions on the use of ADM such as access to housing or public assistance, and outlines a path for ongoing audit of automated decision-making process for bias and lack of transparency. (See: Artificial Intelligence (AI), Algorithmic Violence, Predictive Decision Support Intervention (DSI))"
Autopoiesis
"Making, reproducing, and sustaining one’s self. An autopoetic organism, self, machine or system consists of a “network of processes” which, “through their interactions and transformations regenerate and realize the network of processes (relations) that produced them.”"
Biographic Mediation
"The instrumentalization of life-writing in seeking aid: how we tell our stories in order to receive care. (See: Anamnesis, Instrument, Hypomnemata, Life-Writing)"
Biopsychosocial Model
"First proposed in the mid-1970’s and widely adopted by clinicians, researchers, and educators over the ensuing generation, the biopsychosocial model situates the complex interface between medical knowledge and the needs of individual patients in “a way of understanding how suffering, disease, and illness are affected by multiple levels of organization, from the societal to the molecular,” while simultaneously centering  “the patient’s subjective experience as an essential contributor to accurate diagnosis, health outcomes, and humane care.” Put simply, “clinicians must attend simultaneously to the biological, psychological, and social dimensions of illness” in order “to understand and respond adequately to patients’ suffering—and to give them a sense of being understood.” Linked to systems theory in its emphasis of context and cross-disciplinarity over analytic approaches characterized by narrow specialization, the biopsychosocial model seeks to preserve complex, holistic relationships in its analyses. (See: Bodymind, Exposome)"
Bodymind
"A vector in disability discourse away from dualist (e.g. Cartesian) separations of bodily and mental knowledge, experience, causes and effects: “We can refer meaningfully, if tentatively, to mind and body, but ultimately the two are so fully integrated that they should also be considered one,” in that “mental and physical processes not only affect each other but also give rise to each other.” (See: Biopsychosocial Model)"
Coherent
Like two waves arriving at the shoreline in the same moment. (See: Signal)
Common Sense
"The way our own senses fit together with one another, and become legible to others. As Arendt uses the term, it is protection from alienation, both politically and bodily: “It is by virtue of common sense that the other sense perceptions are known to disclose reality and are not merely felt as irritations of our nerves or resistance sensations of our bodies.” (See: Discourse, Disidentification, Epistemology, Ideology, Interpellation)"
Composition
"An action of “re-listening:” a set of collectively defined procedures that are iteratively applied, tested, and reworked. Making a form, not like building a house out of building materials (construction), but like describing something to create a mental picture, or getting in the habit of exercising. (See: Listening, Poetics, Soundscape)"
Compression
"In terms of representation, compression is a process of making a simpler or more lightweight representation from an original version. A lossy compression is created, in part, by removing information that is not deemed meaningful, such that the reconstituted copy has lost some aspect of the original. Compression is a fundamental process in digital representations, including AI. Conceptually, compression can serve as a metaphor for any simplified communication of complex reality: thought into language, an explanation, a diagram, etc. (See: Embedding, Information, Latent Space, Sampling, Variational Autoencoder)"
Consent
"A negotiation of agency, concerning both what others allow us to do to them, and what we allow others to do to us."
Crip
"Crip articulates pride, critical awareness, and celebration of difference with regard to identifying as a disabled person. Similar to queer in that it is a slur reclaimed as a term of self-identity, crip expresses the non-compliant, anti-assimilationist position that disability is a desirable part of the world. When used as a verb, to crip is to engage in “practices of critique, alteration, and reinvention of our material-discursive world,” to re-center narratives of disability in contexts where it has been overlooked or excluded. (See: Accessibility, Disability, Disability Justice, Impairment)"
Data
"Raw stuff that, through a process of interpretation, becomes information that may have meaning. Can have its own structure and context, or not. Can be material or abstract. Can be of one kind or many. (See: Ground Truth, Information, Interpretation)"
Debility
"A state of weakness, incapacity, or impairment, limiting an individual's ability to perform activities of daily life. Jasbir Puar situates debility as a spectrum of experiences that include the dynamics of vulnerability and resilience, exploring how certain bodies are produced as debilitated through systems of oppression, globalization, and the politics of health. (See: Disability, Impairment, Normal)"
Design
"“The interaction of understanding and creation,” including but not limited to methodologies where design is a conscious strategy, also implicit in “how a society engenders inventions whose existence in turn alters that society.” (See: Sociotechnical)"
Diagnosis (Dx)
"The action of identifying patterns in an individual’s health status so as to assign categorical labels within agreed-on institutional systems. Diagnosis may take into account the individual’s health history, test results and other measurements. (See: Data, History (Hx), Information, Treatment (Tx))"
Diffusion
"Diffusion models, used in generative AI to produce realistic synthetic images and data, destroy the structure of the original (what is recognizable about it) by adding noise, then learn how to iteratively restore the original from the noise. (See: Compression, Composition, Coherent, Distortion, Noise, Variational Autoencoder (VAE))"
Digital Biomarkers
"As defined by the eponymous academic journal, Digital Biomarkers are “objective, quantifiable physiological and behavioral data that are collected and measured by means of digital devices such as portables, wearables, implantables, or ingestibles. The data collected are typically used to explain, influence, and/or predict health-related outcomes.”"
Digital Phenotype
"Patterns in data, correlated with health-related outcomes. (See: Data, Diagnosis, Digital Biomarkers, Outcome)"
Disability
"Disability is an institutional category with social, legal and political consequences. It has been theorized in medical (in terms of pathology and cure), social (in terms of constructed exclusions and social change), as well as political/relational terms (medicine is political, social status is intersectional, embodied knowledge is valuable). Disability can also be a part of a person’s identity. Allison Kafer writes: “ideas about disability  animate many of our collective evocations of the future; in these imaginings, disability too often serves as the agreed-upon limit of our projected futures.” As a function of social imagination, it informs what we think is possible. Disability provides a legal and ethical framework for identifying aspects of the environment that exclude or impede people with impairments, and to improve the contexts—legal, social, and architectural, etc—in which disabled bodies and minds exist. While these frameworks overlap conceptually and practically with those of illness—in that some illnesses may produce disability, and some disabilities may produce illness—the two terms are not interchangeable. (See: Ableism, Accessibility, Bodymind, Crip, Disability Justice, Illness, Imaginary, Impairment, Protected Attributes)"
Disability Justice (DJ)
"An organizing framework for exposing and challenging ableism and other forms of oppression that impact people with disabilities. Building on critical and legal concepts of Disability Rights (self-determination, autonomy, inclusion, access to resources, support, and opportunities to thrive), DJ places renewed focus on how disability intersects with race, gender, sexuality, class, and other social identities. (See: Ableism, Accessibility, Crip, Disability, Impairment)"
Discourse
"Where thought is expressed in language, shaping a shared sense of what is appropriate, normal, true, or possible. (See: Common Sense, Disidentification, Epistemology, Ideology, Imaginary, Interpellation)"
Disidentification
"The productively ambiguous position of neither assimilating to, nor reacting against, dominant patterns. (See: Common Sense, Discourse, Ideology, Imaginary, Interpellation)"
Distortion
"What happens when a thing is deformed past a threshold of recognizability or translation. In terms of signals, distortion is the process of progressively introducing harmonics, adding complexity until the signal becomes indistinguishable from noise."
Easy Read
"A way of writing that helps people to understand the main ideas more clearly. Easy read uses short sentences and words, and also has a picture next to each sentence. The picture helps give more information about the words. (See: Accessibility, Information, Plain Language)"
Ecological
"Having to do with the study of relationships, between humans, cultures, systems, processes, tools, and/or non-humans. (See: Clinic, Home, Environmental, In The Wild)"
Electronic Health Records (EHR)
"including laboratory and test results, lists of prescribed medications, vaccinations, and narrative reports written by clinicians (commonly referred to as “open notes”). These records may be accessible to patients without mediation or interpretation"
Embedding
"A way of representing complex data in a simpler form, while preserving important properties and relationships. An image of a face is reduced to a collection of nodes and edges. No dictionary definitions are explicitly learned, but a word is understood in the number of times it appears in the vicinity of other words. A basic example is the task of representing a city—a highly complex entity—in terms of its latitude and longitude, two vectors that identify the city by where on the globe it is located. This may be all you need to know about the city. Adding more details—population, country, yearly precipitation, median income, and so on—builds a richer representation, while adding more dimensions to the embedding space. AI models given the task of creating embeddings learn which implicit patterns and relationships in the data are important to know, without need for high fidelity representations of the individual items. (See: Artificial Intelligence, Compression, Large Language Model (LLM), Machine Learning, Variational Autoencoder (VAE), Retrieval Augmented Generation (RAG))"
Embodiment
"Being in one’s skin. “the lived body as, at once, both an objective subject and a subjective object: a sentient, sensual, and sensible ensemble of materialized capacities and agency that literally and figurally makes sense of, and to, both ourselves and others.” What Donna Haraway called, non-metaphorically, “significant prosthesis:” a vector of meaningfulness that connects between flesh and environment. Occupying a coherent position, orientation, or accountability, and as such, having agential status in political, legal, ontological and epistemological terms. (See: Coherent, Environment, Epistemology)"
Emplotment
"Organizing a series of events into a narrative with a plot, giving it structure, coherence, and causality. Used to contextualize events into meaningful totalities, and to give meaning to disparate sets of events. (See: Ideology, Hermeneutics, Explainability)"
Endpoint
"In research, as in clinical care, an endpoint is identified as significant and relevant information produced by processing raw data, or outcomes. (See: Data, Information, Outcome)"
Environmental
"In healthcare, environment refers to the interaction of external factors on a person’s well-being and health outcomes. Environment may include physical, biological, social, cultural, behavioral, political and regulatory factors. Environment may contain multiple ecologies. (See: Clinic, Home, Ecological, Exposome, In The Wild)"
Epistemology
"How we know what is true, how we know anything at all. Ideas, changing and evolving, about how knowing works, where it comes from, what it covers, and what it can and can’t do. (See: Discourse, Ground Truth)"
Explainability
"In the context of artificial intelligence, a system can be said to be explainable if it includes methods to assist humans who interact with it to understand what automated steps were taken to reach an outcome, even if the low-level mechanics of the solution are inaccessible, as with deep learning models. Explainability often takes shape as a summary or high level overview of the processes and justifications used. (See: Artificial Intelligence, Deep Learning, Emplotment, Interpretability, Large Language Model (LLM), Machine Learning, Model)"
Exposome
"A “comprehensive description of lifelong exposure history” that complements the genome, encompassing internal processes (from gut flora to hormones), as well as both specific and general external factors (pollution, climate, education, class, stress, and so on). (See: Anamnesis, Embodiment, Environmental, History (Hx), Life Writing)"
Fairness
"In the context of AI and machine learning, fairness means freedom from error when measuring between protected attributes—the set of personal characteristics that are protected from discrimination by law and cannot be used as the basis for decisions, such as race, gender, disability status, and so on. (See: Accuracy, Automated Decision-Making (ADM))"
Generative AI
"Simply, a kind of AI model that can make new data based on patterns and relationships learned in its training data. (See: Artificial Intelligence (AI), Variational Autoencoder (VAE)"
Ground Truth
"What is agreed to be stable and true, before any analysis or modeling takes place. The actual, confirmed reality or facts regarding a specific situation, used as a comparison or benchmark to show that models, analyses, and derived data are valid and accurate. (See: Data, Discourse, Ideology, Model)"
Health-related Quality of Life (HRQL)
"An important measure of patient-centered outcomes. The key domains of HRQoL include behavior (what you do), functional status (what you can do), symptoms and symptom burden (how you feel and how it impacts what you can do)."
Hermeneutics
"The study of interpretation. WIth applications from literary theory to ethnography, a set of methods that prepare an observer from one tradition to understand or describe—but not try to explain—the practices and languages of another, including gathering awareness of what is taken for granted within the observers’ own tradition. (See: Incommensurability, Interpretability)"
History (Hx)
"In a healthcare context, History, abbreviated as Hx, is a record of information about a person’s health both current and in the past. A person’s Hx records may include information about their allergies, illnesses, surgeries, immunizations, results of physical exams and tests, medicines taken, as well as habits and behaviors. (See: Anamnesis)"
Home
"In the design of research studies (e.g. clinical trials), home refers to experimental settings that are intended to capture more accurate data about subjects’ daily life than is possible in a clinic. A number of assumptions may be embedded in the notion of home, such as assuming that subjects have access to a stable, consistent and safe environment where they have the ability to engage with the research in a self-supervised way. (See: Clinic, Ecological, Environmental, In The Wild)"
Homotopy
"In the context of generative AI, different samples taken from the same model’s latent space share a homotopic relationship, in that each can be continuously deformed into the other along the contours of the feature space. For example: a pair of homotopic images of cats may be sampled from the latent space of a model trained on images of cats. By interpolating between the two images, a series of new images can be continuously sampled, where the first image of a cat appears to change gradually into the second, without ever presenting as either non-image or non-cat. It is likely that the latent space illuminated by this model does not hold all possible cats, but everything it holds is likely to look like a cat. This is evidence that the model has learned a stable, persistent representation of the visual structure of cats. (See: Interpolation, Latent Space)"
Hypomnemata
"(also written as Hupomnemata) Ὑπομνήματα [notebooks]. Collected notes and reflections “which must be reread from time to time so as to reactualize their contents,” alongside and intertwined with practices of listening and self-reflection. From Michel Foucault’s study of Seneca’s rules for self-knowledge and self-care. (See: Imaginary, Life-Writing)"
Ideology
"Dominant patterns that apply coherence, as the influence of power through groups and systems: “The imaginary relationship of individuals to their real conditions of existence.” (See: Common Sense, Discourse, Disidentification, Imaginary, Interpellation)"
Illness
"How a particular person experiences disease, condition, or symptoms, including the collected effects on the person’s existence and identity such as biological, psychological, social, and economic outcomes. (See: Disability, Health-Related Quality of Life)"
Imagination
"In part, imagination is simply “the specific ability to produce and to decode images,” as media theorist Vilém Flusser put it. This can be further reduced to the realization of mental images, in whatever modality (thinking of a word, sound, place, gesture, plan, system, etc). This act can be solitary or collective. Imagination encompasses, as sociologist Ruha Benjamin lists: dreams, dreaming, ideas, ideology, stories, speculation, playing, poetry, myths, visions, narratives. Benjamin notes the strong role of imagination in the field of sociology, as “the capacity to link individuals’ personal problems with broader social processes.” Imagination is a line of flight, a fulcrum, a tool for both repair and new creation. Writer Imani Perry situates imagination prior to practice: “Imagination doesn’t erase nightmares, but it can repurpose them with an elaborate sense-making or troublemaking.” (See: Analysis, Apperception, Imaginary, Interpretability)"
Imaginary
"Imaginary concerns social articulations of what is possible: the many ways we express what we can think, what we think might happen, and what we think can be done. Imaginary is not in opposition with notions of truth, it is part of how truth thrives. Imaginaries are collective projections of a desirable and feasible future, per Ruha Benjamin’s succinct definition. For poet and writer Édouard Glissant, each culture has its own particular imaginary which is expressed in “aIl the ways a culture has of perceiving and conceiving of the world.” Psychoanalyst Jacques Lacan placed the imaginary with clinical specificity—as all that is available to the senses—alongside the symbolic (what language can do) and the real (the unrepresentable aspects of reality). To be imagined is to be, as Glissant puts it, “conceivable in transport of thought” . Sociotechnical Imaginaries, a concept developed by Sheila Jasanoff and Sang-Hyun Kim among others, describes how visions of scientific and technological progress carry with them implicit ideas about public purposes, collective futures, and the common good. (See: Common Sense, Discourse, Ideology, Imagination, Latent Space)"
Impairment
"“A special kind of limit.” While Impairments have in the past been used negatively in both legal and theoretical frameworks, as the medical basis for social constructs of disability, impairments are not in themselves good or bad. Having an impairment creates a re-routing of intention through “a productive distortion of an ability.” where “The ability itself might be real or imagined.” (See: Crip, Disability, Distortion, Imaginary, Noise)"
Incommensurable
"Fundamentally different. A characteristic of two or more entities that cannot be compared because they do not share a common standard, point of reference, or measurement. Incommensurability is a significant concept in mathematics, philosophy, and ethics: where translation is not possible, analysis is built on interpretation."
Inference
"The action of predicting what is likely, based on evidence, ideas, methods, or analogies. Inference is something both people and machines do. It is a natural way of thinking. It has been formalized as the basis of both statistics and AI. Different kinds of inference include: inductive (starting with evidence), deductive (starting with ideas), statistical (starting with evidence and a set of methods), abductive (jumping between ideas and evidence by guesswork), or analogical (finding similarities between different situations). (See: Artificial Intelligence (AI), Model)"
Information
"“All instances where people interact with their environment in any such way that leaves some impression on them  These impressions can include the emotional changes  can also reflect complex interactions where information combines with preexisting knowledge to make new understandings.” To inform is to give form to something. Information is raw data that has been worked on: abstracted, annotated, analyzed, measured, compared, tracked, interpreted, synthesized, modeled, represented, etc. (See: Data, Endpoint, Model, Noise, Signal)"
Instrument
"An instrument is an extension of a person’s senses and actions that reliably represents their intentions, even as it adapts to new settings."
Interpellation
"Interrupted, hailed, called, compelled to respond or self-identify in a particular way or shape to a particular prompt. To make yourself into a pattern. (See: Discourse, Disidentification, Ideology, Imaginary)"
Interpolation
"In mathematical terms, placing a new point between two (or more, depending on dimensionality) discrete points, smoothing a curve. In musical terms, not a sample, not a cover, but a quotation, like carrying a familiar tune). (See: Homotopy, Latent Space)"
Interpretability
"In the context of artificial intelligence, a model can be called interpretable if humans interacting with the model can experience firsthand how input features influence the output. An interpretable model’s inner mechanisms are understandable to humans. All interpretable models are also explainable, in that the justification for outcomes can be communicated; however, not all explainable models are interpretable, e.g. deep learning models. (See: Artificial Intelligence, Deep Learning, Explainability, Hermeneutics, Model)"
Intersubjectivity
"A shared understanding; a concept that emphasizes the way perceptions, experiences, and interpretations are shaped by interactions with others. Intersubjectivity is invoked in situations where personal experience, even sense of self, is co-created by interactions within social contexts and dynamics. (See: Common Sense, Discourse)"
Intervention
"Any action taken to relieve the burden of disease, or to improve a patient’s health status. Interventions may refer to medical procedures, preventive measures, therapeutic treatment, behavioral modification, and/or diagnostic tests. (See: Minimal Clinically Important Difference (MCID), Patient-Reported Outcomes (PROs), Patient-Reported Outcome Measures (PROMs), Treatment (Tx))"
Large language model (LLM)
"A generative AI model, typically with billions or trillions of parameters, that has been trained on excessively large amounts of text or multimodal data in order to perform natural language tasks, including understanding and generating human-like language. (See: Generative AI, Latent Space, Retrieval Augmented Generation (RAG))"
Latent Space
"A compressed representation capturing the underlying structure and patterns of some original data as embeddings. The spatial relation between embeddings in latent space can provide insight into how different samples are related in terms of their features, both explicit and implicit. In generative AI, a model learns to encode data into latent space, then generate new data by sampling from the latent space. New data sampled from the latent space will be unique, but will maintain a coherent representation of the patterns or features of the original data. Manipulating or coordinating between different latent spaces is key to the functionality of large language models, multimodal modals, and translation models, among others. (See: Compression, Data, Embedding, Generative AI, Homotopy, Interpolation, Manifold, Variational Autoencoder (VAE))"
Life-Writing
"Life-writing covers “everything from the complete life to the day-in-the-life, from the fictional to the factional. It embraces the lives of objects and institutions as well as the lives of individuals, families and groups. Life-writing includes biography, autobiography, memoirs, letters, diaries, journals, anthropological data, oral testimony, eye-witness accounts, biopics, plays and musical performances, obituaries, scandal sheets, and gossip columns, blogs, and social media.” (See: Exposome, Hypomnemata, Narrative Medicine, Patient-Generated Health Data (PGHD))"
Linguistic validation
Adjusting for how changes in language produce new patterns in data.
Longitudinal
"Describes data sampled at periodic intervals over a timespan (See: Data, Momentary, Retrospective, Sampling)"
Machine Learning
"A subset of artificial intelligence that describes a range of algorithmic approaches to learning from data. Learning, in the context of machine learning, means: given a set of data, a task to be performed on the data, and a measure of how well the task has been performed, perform the task well on both the original (i.e. ‘training’) data and new (previously unseen) data. In practice, this means creating a model of patterns and relationships in the original data, identifying a ground truth for how the model should perform the task, and adjusting the model’s parameters to minimize errors on the original data while maintaining the capacity to generalize to new data. (See: Artificial Intelligence (AI), Data, Model, Performance)"
Manifold
"A kind of model that generalizes mathematical ideas about space. A manifold can be any number of dimensions: for instance, a curve is a one-dimensional manifold, and a surface is a two-dimensional manifold. Latent space, as the projection of learned feature representations in many AI models, is a many-dimensional manifold of as many dimensions as the representation holds. (See: Homotopy, Latent Space, Model, Topos)"
Minimal Clinically Important Difference (MCID)
"The threshold at which a change in one’s health becomes meaningful. Find by asking the patient: would you consider repeating this intervention if you had the choice to make again? (See: Intervention, Patient-Reported Outcomes (PROs), Patient-Reported Outcome Measures (PROMs))"
Model
"An abstract representation that tries to capture what is meaningful about a thing. (See: Compression, Homotopy, Latent space, Manifold, Sampling)"
Momentary
"In the context of research, a momentary context refers to a brief window of time in which interventions happen, tests or measurements are conducted, or reports are solicited: i.e. in the moment. (See: Longitudinal, Retrospective, Sampling)"
Multimodal
"In the context of AI, learning relationships between different representational modes such as image, sound, text, video, and so on. (See: Artificial Intelligence (AI), Model)"
Narrative Medicine
"Understanding health in the context of life. (See: Anamnesis, Emplotment, Exposome, History (Hx), Hypomnemata, Life-Writing, Patient-Generated Health Data (PGHD))"
Natural Language Processing (NLP)
"How computers come to understand what humans mean, as when people use language to express themselves to one another. (See: Artificial Intelligence)"
Neurodivergent
Of an individual’s particular experience with non-normative affective or cognitive processes.
Neurodiversity
A representation of the given (“actual” in Deleuzean terms) spectrum of non-normative affective or cognitive processes.
Noise
"Used in distinction to signal (as a desirable source of information)—as excess, impairment, background, mask. Qualitatively, noise is a way of locating meaningful difference that is affective, non-representational and non-discursive. (See: Discourse, Distortion, Impairment, Incommensurable, Information, Non-Representational, Signal)"
Normal
"The force of coherence to dominant patterns. For philosopher and historian of science Georges Canguilhem, normal, in the context of health and illness, is the way an organism adapts and remains the same, maintaining stability in response to its changing environment. In this usage, normal is not fixed or static, it is a dynamic process of adjusting and regulating, where internal and external factors combine to shape what’s normal. (See: Common Sense, Discourse, Ideology, Interpellation, Model, Non-Representational)"
Non-Representational
"In non-representational research, the emphasis is not solely on representing or mirroring an external reality, but rather on engaging with the complexities and multiplicities of human-environment interactions, embodied experiences, and the relational nature of knowledge production, as well as lived experiences, interactions, and affective dimensions that may not be easily captured through traditional forms of representation. Informed by post-structural and post-humanist thought, non-representational research challenges stable identities, hierarchies, and boundaries, emphasizing the fluidity, contingency, and relationality of social and material phenomena. Non-representational research methods may be performative and/or collaborative, focusing on the role embodied, sensory, and relational experiences play in shaping knowledge and understanding. (See: Disidentification, Model, Normal)"
Outcome
"In research as in clinical care, an outcome is a variable being measured, such as a particular survey score, or lab result. It is data captured by means of an instrument (anything from a writing prompt to a medical device); it can be structured or unstructured, qualitative or quantitative. (See: Data, Endpoint, Instrument)"
Overhealing
"Scar tissue, etc"
Pain
"“An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”"
Parataxis
Producing poetic insight by placing things side by side
Pathography
"Writing about illness (See: Anamnesis, Emplotment, Life-Writing)"
Patient Advocacy
"Representing the interests and rights of patients on individual, community, or systemic scales. Advocacy includes making sure patients’ needs are met, from access to care to education, decision-making, and ethics. (See: Patient-centered care (PCC))"
Patient-Centered Care (PCC)
"A practical ethics of empowering patients to become active participants in their own care, emphasizing the importance of understanding patients’ perspectives and values, involving them in decision-making, and offering tailored approaches that suit individual patient’s needs. (See: Minimal Clinically Important Difference (MCID), Patient Advocacy, Translational Medicine)"
Patient-Generated Health Data (PGHD)
"Health-related data (e.g., health history, device data, and patient-reported outcomes (PROs) that are created, recorded, or gathered by or from patients, family members, or other caregivers to help address a health concern or promote health. The use of PGHD offers a unique opportunity to fill in gaps in information and provide a more comprehensive picture of ongoing patient health for use during care, resulting in potential cost savings and improvements in health care quality and outcomes, care coordination, and patient safety."
Patient-Reported Experience Measures (PREMs)
"A kind of Patient-Reported Outcome Measure (PROM), PREMs are focused on the quality of a patient’s experience in terms of the health services they receive, their interaction with the health care providers or automated health systems and tools. PREMs often take the form of a satisfaction questionnaire. (See: Patient-Centered Care (PCC), Patient-Reported Outcome Measures (PROMs))"
Patient-Reported Outcomes (PROs)
"Patient-Reported Outcomes are timely records of a patient’s experience of illness—their inner thoughts, bodily sensations, and social experience. PROs are raw data coming directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. PROs are one kind of Patient-Generated Health Data (PGHD). (See: Apperception, Endpoint, Intervention, Minimal Clinically Important Difference (MCID), Outcome, Patient-Generated Health Data (PGHD), Patient-Reported Outcome Measures (PROMs), Self-report)"
Patient-Reported Outcome Measures (PROMs)
"A PROM is a standardized tool: a survey, instrument, scale, or single-item measure used to assess particular PROs, such as symptoms, behaviors, or functional abilities, as perceived by the individual, obtained by directly asking the individual to self-report. (See: Endpoint, Intervention, Minimal Clinically Important Difference (MCID), Outcome, Patient-Reported Outcomes (PROs))"
Phenomenology
"The study of what makes experience and action possible. (See: Apperception, Study)"
Plain language
"​​Plain language is a way of writing that is more accessible. It uses smaller words and shorter sentences. This helps people (with intellectual and developmental difficulties, English language learners, etc.) to understand the main ideas more clearly. (See: Accessibility, Accommodation, Easy Read)"
Poetics
"The makingness of things and events; the “revelation and distillation of experience” that gives names and shapes to ideas and imaginaries, so they can be thought. (See: Hermeneutics, Imaginary, Interpretability)"
Precision
How close multiple predictions are to each other—consistency and exactness. (See: Accuracy)
Predictive Decision Support Intervention (DSI)
"“Technology intended to support decision-making based on algorithms or models that derive relationships from training or example data and then are used to produce an output or outputs related to, but not limited to, prediction, classification, recommendation, evaluation, or analysis” (89 FR 1192)(See: Analysis, Automated Decision Making (ADM), Model)"
Prompt Engineering
"Prompt Engineering is the set of opinions on how to use language to effectively interact with a model of language. (See: Large Language Models (LLMs), Retrieval Augmented Generation (RAG))"
Quality of Life (QoL)
(See: Health-Related Quality of Life (HRQL))
Realist Synthesis
"A method for the systematic review of research that shows the influence of context on research outcomes: “What works for whom under what circumstances, how and why?” (See: Abduction, Research, Study, Theory)"
Real-Time
"The temporality of automation: a continuously unfolding present, an anticipated future. (See: Anticipation, Momentary, Temporality)"
Real-World
"Also referred to as ‘In the wild’ or ‘naturalistic’, Real-World refers to everyday activities and spaces, as well as actual experiences, environments, and populations. Real-World is understood as an external basis for abstractions, theories, concepts, or simulations. In clinical trials, a Real-World Setting or Environment refers to the design of studies conducted in everyday life situations. By placing the research outside of controlled laboratory or clinical settings, the aim is to capture a more authentic range of behaviors and outcomes. (See: Clinic, Home, Environment, Research, Reworlding, Simulation, Topos, Translational Medicine)"
Research
"Systematic investigation, designed to develop or contribute to generalizable knowledge. (See: Study, Synthesis)"
Resonance
"“A sympathetic vibration or ‘the condition in which an oscillating or periodic force acting on an object or system has a frequency close to that of a natural vibration of the object.’ One system acts upon another near it spatially or akin to it vibrationally. It is the physical, social, linguistic, and psychological fact of the more than one.” (See: Attunement)"
Retrieval Augmented Generation (RAG)
"A natural language processing (NLP) technique used by AI models which combines retrieval with generation. RAG-enabled AI models are able to generate responses to queries based on specific contextual material provided to the model. (See: Embedding, Large Language Model (LLM), Natural Language Processing (NLP),  Prompt Engineering)"
Retrospective
"Looking backward, as in recalling a memory, or analyzing data sampled during past events. (See: Longitudinal, Momentary, Sampling, Soundscape, Temporality)"
Reworlding
"To introduce something that has been abstracted or compiled into a complex, real-world environment, for the purposes of re-sampling the signal, mixed with resonant traces of the new environment, the tools, and the processes used. (See: Environment, Real-World, Resonance, Sampling, Signal, Transduction)"
Sampling
"Taking a small amount of something to make generalizations about that thing. This can refer to signals, populations, observations, processes, etc. As with any representation, there is loss—choice of sample type and size, as well as identifying what features and relationships are meaningful are crucial aspects of sampling. (See: Compression, Data, Longitudinal, Momentary, Retrospective, Temporality)"
Self-report
"A kind of research tool used across science, medicine, and marketing research: questions people answer about themselves in order to communicate thoughts, feelings, attitudes, symptoms and behaviors related to one’s own direct experience. (See: Apperception, Life-Writing, Patient-Generated Health Data (PGHD), Patient-Reported Outcomes (PROs), Sampling)"
Signal
"Where attention is directed, what calls out. (See: Attention, Data, Distortion, Information, Noise, Sampling)"
Simulation
"Simulations are “the real-world activations of data to calculate and predict future action and movement: how a star will explode, how a hurricane will move. They are both literal products of equations that describe what actions can happen inside of a virtual world, and potent metaphors for future-casting.” simulations are unreal worlds that produce real actions: “We simulate when we imagine ourselves and others in the future, and we base our current actions on that mental simulation.” (See: Data, Real-World, Reworlding)"
Sociotechnical
"A way of describing systems, designs, attitudes, and imaginaries that emphasizes the ways development of technology is socially determined and society is shaped by technical artifacts. Each makes the other. (See: Technoscience)"
Software as a medical device (SaMD)
"Software intended to be used for one or more medical purposes that perform these purposes without being part of a hardware medical device. (See: Application Programming Interface (API), Instrument)"
Soundscape
"A transformational arrangement of the field of listening. In sound artists and organizers Ultra-red’s use of the term, the soundscape as a mutable object for collective inquiry. Silence is a precondition for a soundscape to become apparent, either through listening, as a disciplined and political act of deference, or noise-canceling, as a methodological frame found in the idealist fields of acoustic ecology and later, sonic materialism. In Ultra-red’s methodology of Militant Sound Investigation, the soundscape is accessed with the aid of technological instruments, with the “capacity to recall the investigators to silence” to “correct the tendency to fixate on demands that do not resonate with the curiosity, friendship, love” that hold the collective effort together. (See: Attunement, Composition, Incommensurable, Instrument, Noise, Retrospective, Sampling, Silence, Study, Topos)"
Study
"Study has both formal and informal uses: as a research process following a protocol and agreed-on best practices within a particular discipline, such as with a clinical trial; study can also be used more informally to refer to co-learning, or communal engagement with a subject of shared interest. I like the way Fred Moten and Stefano Harney keep the term in circulation: “study is what you do with other people. It’s talking and walking around with other people, working, dancing, suffering, some irreducible convergence of all three, held under the name of speculative practice. The notion of a rehearsal—being in a kind of workshop, playing in a band, in a jam session, or old men sitting on a porch, or people working together in a factory—there are these various modes of activity. The point of calling it ‘study’ is to mark that the incessant and irreversible intellectuality of these activities is already present. These activities aren’t ennobled by the fact that we now say, “oh, if you did these things in a certain way, you could be said to have been studying.” To do these things is to be involved in a kind of common intellectual practice. What’s important is to recognize that that has been the case – because that recognition allows you to access a whole, varied, alternative history of thought.”"
Synthesis
"A generative and unfixed process of assembling or bringing together in a mixture. As the inverse of analysis, synthesis activates imaginaries, tracing lines of relation to “unpack the context/mechanism/outcome relationship.” As a listening strategy, synthesis provides a momentary opportunity to check for shared understanding, to correct misunderstanding, to demonstrate that narratives have been heard and interpretation is in progress. Synthesis is difference: in the midst of collapsing, mutating, deterritorializing into something else. (See: Analysis, Imaginary, Momentary, Theory)"
Temporality
"The state of existing within, or having a relationship to, time. Ability, gender, culture, sexuality, class, race, age, immigration status, etc. all contribute to the configuration of widely differing and specific temporalities, manifest through individual and collective experience of interruptions and reconfigurations, deferred or uncertain futures, as well as understandings of memory, inheritance and legacy. Temporalities are subject to distortions through processes of normalization. (See: Anamnesis, Anticipation, Distortion, Exposome, History (Hx), Longitudinal, Momentary, Retrospective)"
Texture
How a thing feels: the attributes of surface and structure as they appear in a consistent way to the senses.
Topos
"Τόπος [place], as in: a place to find something, a landscape. The features and locality of a space—affective, cultural, demographic, epistemological, geographic, linguistic, logical, social, technological, etc. A theme, topic, or set: a way of laying out categories to understand relationships or make decisions. (See: Affect, Epistemology, Manifold, Texture)"
Transformer
"A type of AI model architecture that is popularly used for natural language processing and related tasks. Transformers encode position (for sequential data, such as text) and perform self-attention, weighing the relative importance of different fragments of data (tokens) to capture what is meaningful over large stretches of data (Vaswani et al.). (See: Artificial Intelligence (AI), Attention, Embedding, Large language model (LLM), Machine Learning, Natural Language Processing (NLP), Variation Autoencoder (VAE))"
Transcoding
"Moving a representation between models, such as between higher and lower dimensions or resolutions. (See: Compression, Data, Information, Model, Sampling)"
Transduction
"A carrying, or leading, across. A signal or impulse moving from one medium into another, like a voice on a phone, or cream stirred in milk. In biological terms, “the conversion of signals from the environment outside of a cell into physical or chemical changes within the cell” (Sharma) (See: Affect, Diffraction, Signal, Translation)"
Translation
"Converting something from one form or domain to another, such as between languages. Translation captures and conveys nuanced meaning and context from the original so that it can be understood in its new domain. (See: Transduction, Interpolation, Interpretability, Transcoding, Sampling)"
Translational Medicine
"Multidisciplinary approach to connecting basic laboratory research with real-world applications, translating findings from research into therapies, tools, and better patient experiences. (See: Patient-Centered Care (PCC), Real-World, Research, Reworlding)"
Treatment (Tx)
"Interventions involved in the management and care of a patient’s health. Healthcare providers deciding on approaches to treatment may consider diagnosis, patients’ needs, clinical outcomes, and value. (See: Diagnosis (Dx), Minimum Clinically Important Difference (MCID), Patient-Centered Care, Value-Based Care)"
Uncomputable
"Problems are uncomputable (or undecidable) where they can’t be solved with a definitive ‘yes’ or ‘no’ answer. Although this ‘undecidability’ can be for logical or abstract reasons, it is a matter of limits. In this light, problems are “effectively” undecidable where they require more energy or attention than are available to the solvers of the problem."
Value-Based Care
"Framework for structuring healthcare systems (delivery, payment, management, etc) around value for patients, defined as positive health outcomes per unit of cost."
Variational Autoencoder (VAE)
"A machine learning technique that is central to many generative AI systems. An autoencoder learns how best to compress something, that is, represent some original version of a thing in the simplest possible way, such that it can be re-made (decompressed) as a near-identical proxy. A variational autoencoder, by extension, provides access to the model to make adjustments at the compressed level (in its latent space of representation), producing variations on the original that maintain its key features and internal relationships. (See: Compression, Latent Space, Large Language Model (LLM), Machine Learning)"
Waste
"In summing up the stuff of cancer treatment (self-help books, prosthetics, wigs, nutritional supplements, unused medication, etc.), anthropologist Lochlann Jain puts the waste of disease in contrast with its data—where the latter is “lifted out” of a person to shape a clinical representation of them, the former, as a mess of odds and ends, reveals the work of pulling together weakly normalized, social persons. Jain draws on Mary Douglas’s definition of dirt as “‘matter out of place,’ or the stuff that does not fit within categories.” A generation earlier, Douglas had written: “Where there is dirt there is system. Dirt is the by-product of a systematic ordering and classification of matter, in so far as ordering involves rejecting inappropriate elements.” Waste, unlike its cleanly abstracted counterpart data, implies both “a set of ordered relations and a contravention of that order” (Douglas 36) (See: Data, Information, Noise, Signal)"