Constant human need and urge to find simple patterns in a complex system have perpetually caused more pain and suffering.
Almost 20 years later, Charles E Rosenberg's brilliant piece The Tyranny of Diagnosis is not only prevalent and thriving but now has made us focus on "paperwork" rather than prevention and preparation for current and future pandemics.
For the first time, I feel deep learning and graph algorithms can go a better job (not a panacea) in personalizing medicine than the existing "knowledge" based medicine which naturally forces massive generalization when none exists in idiosyncratic human and non-human animals.
One such problem is implicit in the way in which we use disease categories to perform the cultural work of enforcing norms and defining deviance. A second dilemma grows out of the difficulty inherent in fitting idiosyncratic human beings into constructed and constricting ideal-typical patterns, patterns necessarily abstract yet, in individual terms, paradoxically concrete. A third problem lies in medicine's growing capacity to create protodisease and disease states that shape everyday medical practice and thus individual lives. Fourth is what might be described as the bureaucratic imperative, the way in which the creation of nosological tables, guidelines, protocols, and other seemingly objective and practice-defining administrative mechanisms constitutes in aggregate an infrastructure mediating between and among government and the private sector, practitioners and patients, specialists and generalists, and—in the United States—insurers and providers. That infrastructure is as much a part of the experience of sickness as diagnosis or clinical management is; they are in fact indistinguishable.
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A somewhat different set of dilemmas turns on the difficulty inherent in adjusting the individual to the general and the abstract. How is a particular case of tuberculosis or lupus, for example, related to the textbook's description or a treatment protocol's prescriptions? Agreed-upon disease pictures are configured in contemporary medicine around aggregated clinical findings—readings, values, thresholds—whereas therapeutic practice is increasingly and similarly dependent on tests of statistical significance. Yet men and women come in an infinite variety, a spectrum rather than a set of discrete points along that spectrum. An instance of cancer exists, for example, along such a continuous spectrum; the staging that describes and prescribes treatment protocols is no more than a convenience, if perhaps an indispensable one. In this sense, the clinician can be seen as a kind of interface manager, shaping the intersection between the individual patient and a collectively and cumulatively agreed-upon picture of a particular disease and its optimal treatment.
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Our understanding of the biopathological aspects of disease and the technologies available to manage and understand them are a part of reality as much as are our clogged arteries or dysfunctional kidneys. It is in this sense that I employ the phrase tyranny of diagnosis. I might just as well have used the term indispensability. Diagnosis is a cognitively and emotionally necessary ritual connecting medical ideas and personnel to the men and women who are its clients. Such linkages between the collective and the uniquely individual are necessary in every society, and in ours the role of medicine is central to such negotiated perceptions and identities. The system of disease categories and diagnosis is both a metaphor for our society and a microcosm of it. Diagnosis is a substantive element in this system, a key to the repertoire of passwords that provide access to the institutional software that manages contemporary medicine. It helps makes experience machine readable.
In the act of diagnosis, the patient is necessarily objectified and recreated into a structure of linked pathological concepts and institutionalized social power. Once diagnosed, that bureaucratic and technically alienated disease-defined self now exists in bureaucratic space, a simulacrum thriving in a nurturing environment of aggregated data, software, bureaucratic procedures, and seemingly objective treatment plans. The power of the bureaucratized diagnostic function is, as I have suggested, exemplified in the willingness of physicians to employ the constraining—yet empowering—categories of such nosologies even when they remain skeptical of their validity. The routine use by clinicians of the American Psychiatric Association's Diagnostic and Statistical Manual and its often arbitrary categories remains a powerful example of this phenomenon. Equally revealing is the spectacle of individual sufferers and disease interest groups demanding the attribution of particular disease identities, of which chronic fatigue syndrome is a particularly visible example.
Almost 20 years later, Charles E Rosenberg's brilliant piece The Tyranny of Diagnosis is not only prevalent and thriving but now has made us focus on "paperwork" rather than prevention and preparation for current and future pandemics.
For the first time, I feel deep learning and graph algorithms can go a better job (not a panacea) in personalizing medicine than the existing "knowledge" based medicine which naturally forces massive generalization when none exists in idiosyncratic human and non-human animals.
One such problem is implicit in the way in which we use disease categories to perform the cultural work of enforcing norms and defining deviance. A second dilemma grows out of the difficulty inherent in fitting idiosyncratic human beings into constructed and constricting ideal-typical patterns, patterns necessarily abstract yet, in individual terms, paradoxically concrete. A third problem lies in medicine's growing capacity to create protodisease and disease states that shape everyday medical practice and thus individual lives. Fourth is what might be described as the bureaucratic imperative, the way in which the creation of nosological tables, guidelines, protocols, and other seemingly objective and practice-defining administrative mechanisms constitutes in aggregate an infrastructure mediating between and among government and the private sector, practitioners and patients, specialists and generalists, and—in the United States—insurers and providers. That infrastructure is as much a part of the experience of sickness as diagnosis or clinical management is; they are in fact indistinguishable.
[---]
A somewhat different set of dilemmas turns on the difficulty inherent in adjusting the individual to the general and the abstract. How is a particular case of tuberculosis or lupus, for example, related to the textbook's description or a treatment protocol's prescriptions? Agreed-upon disease pictures are configured in contemporary medicine around aggregated clinical findings—readings, values, thresholds—whereas therapeutic practice is increasingly and similarly dependent on tests of statistical significance. Yet men and women come in an infinite variety, a spectrum rather than a set of discrete points along that spectrum. An instance of cancer exists, for example, along such a continuous spectrum; the staging that describes and prescribes treatment protocols is no more than a convenience, if perhaps an indispensable one. In this sense, the clinician can be seen as a kind of interface manager, shaping the intersection between the individual patient and a collectively and cumulatively agreed-upon picture of a particular disease and its optimal treatment.
[---]
Our understanding of the biopathological aspects of disease and the technologies available to manage and understand them are a part of reality as much as are our clogged arteries or dysfunctional kidneys. It is in this sense that I employ the phrase tyranny of diagnosis. I might just as well have used the term indispensability. Diagnosis is a cognitively and emotionally necessary ritual connecting medical ideas and personnel to the men and women who are its clients. Such linkages between the collective and the uniquely individual are necessary in every society, and in ours the role of medicine is central to such negotiated perceptions and identities. The system of disease categories and diagnosis is both a metaphor for our society and a microcosm of it. Diagnosis is a substantive element in this system, a key to the repertoire of passwords that provide access to the institutional software that manages contemporary medicine. It helps makes experience machine readable.
In the act of diagnosis, the patient is necessarily objectified and recreated into a structure of linked pathological concepts and institutionalized social power. Once diagnosed, that bureaucratic and technically alienated disease-defined self now exists in bureaucratic space, a simulacrum thriving in a nurturing environment of aggregated data, software, bureaucratic procedures, and seemingly objective treatment plans. The power of the bureaucratized diagnostic function is, as I have suggested, exemplified in the willingness of physicians to employ the constraining—yet empowering—categories of such nosologies even when they remain skeptical of their validity. The routine use by clinicians of the American Psychiatric Association's Diagnostic and Statistical Manual and its often arbitrary categories remains a powerful example of this phenomenon. Equally revealing is the spectacle of individual sufferers and disease interest groups demanding the attribution of particular disease identities, of which chronic fatigue syndrome is a particularly visible example.
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