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The Virtualization of Health and Illness in the Age of Biological Citizenship

It is widely accepted today that the modern concept of citizenship has become defined as biological or biomedical citizenship. Current perspectives on the practices of health and illness underestimate the effects of two increasing trends, hyperspecialization and universalization, which combine into a process of virtualizing biomedical practice and research toward the production of practitioners, patients, and medical concepts of normalcy and pathology that fit in with the demands of an information- and knowledge-based economic regime. The process has led to the emergence of the ideal type of the virtual patient. As a virtual patient, a suffering individual is reduced to a bureaucratically manageable case file. I suggest that we need to provide a conceptual framework that can account for the developments in biomedical and mental health research and enable patients, doctors, and caregivers to cooperate in favor of the individual patient’s health, autonomy in his/her decision, and his/her positive development of life-course—understood to be the modern meanings of life, liberty, and the pursuit of happiness in matters of health care.

The Sociology and Anthropology of Health and Illness

In the 1930s and 1940s, a constellation of researchers began to make explicit the relations between doctors, patients, and their social environment in the form of the sick role, on the one hand, and concept formation in the medical sciences, on the other. This constellation combined medical, scientific, and intellectual developments of the long nineteenth century, first and foremost, in the Human Relations movement at Harvard’s Industrial Research Department and the Social Relations Department under Talcott Parsons. At the same time, French historian Georges Canguilhem made his contemporaries and, afterward, later generations of scholars, such as Michel Foucault, aware of the historic contingencies that rest in the conceptions of the normal and the pathological. In the 1970s, Renee Fox and colleagues managed to persuade Talcott Parsons to work at the University of Pennsylvania. Fox was already among the more prominent intellectuals who began to enlighten social scientists, public health administrators, and interested intellectuals about the exploration of the ethical dimension of the biomedical sciences. Her effort was strengthened by the human condition paradigm that Parsons and Fox’s group developed—a paradigm following premises that had their roots in the philosophy of medicine of Immanuel Kant and Karl Jaspers. In the past two decades, Paul Rabinow, Nikolas Rose, Susan Pickard, and others have begun to transform scientific and public understanding of what it means to be healthy, normal, or sick in contemporary society, where the gaze upon the human condition has become less material, clinical, and socio-political, and more microbiological, neuro-chemical, and self-governmental. In short, individual citizenship and participation has become biological and self-centered, and at the same time, regimes of knowledge production, legislation, and decision-making in research, diagnostic, and therapeutic contexts are subjected to an increasing tendency to de-individualize, over-objectify, and de-autonomize processes of decision-making. Patients are advised to accept predetermined therapy and care pathways and steered away from treatments that fit their unique constellation; research is funded in accordance with financial prospects and bureaucratic appropriateness rather than innovative potential; and doctors and care-givers are stretched to the limit in their bureaucratized working environments.

The Emergence of the Virtual Patient

What contemporary academic debates on biosociality, public health, and patient autonomy are often lacking is a satisfying account of the common mechanism that guides the formation of concepts and structures in biomedical science, the transformation of the doctor-patient relation, and biomedical ethics. This mechanism can be described as the ongoing process of virtualization. The debate between experts in science studies, on the one hand, and among laymen, legislators, and journalists, on the other hand, displays a proud yet problematic heritage that more often than not renders them secretly stuck with theories about the sick-role and medical concept formation, which conceive medical practice as it has been between 1850 and 1950. At the same time, it has become unfashionable among scholars and practitioners to associate themselves with patient-centered medical philosophies such as those of Karl Jaspers or Lawrence Henderson (both of which presented different ways of thinking before 1950). If scholars want to get research funding, they better stay with the herd. However, a few brave critics have, for example, laid bare the fact that the creation of medical manuals, such as the Diagnostic And Statistical Manual for Mental Illness (DSM), is largely influenced by debates between operational and phenomenological diagnostics that were all the rage in medical practice in the late nineteenth and early twentieth century. They have argued that, effectively, the prevalence of operational diagnostics today is derived from the teachings of a German named Emil Kraepelin (1856–1926) and that it was men like Jaspers who brought empirical study of patients back in the early 1900s, which led to a reformulation of psychiatry. In short, there are no one-size-fits-all therapy schemes nor are there magic bullets. However, bureaucratic and shareholder inertia in modern health care and research funding create a push toward just such a kind of reductionism, when we actually need a pragmatic and pluralistic integration of both approaches.

Instead the situation is increasingly complicated, for the sick-role (Parsons) has become transformed into the “managed-case role” and effected the emergence of so-called patient-governmentality (Pickard). A few examples:

– Many patients are forced, under metaphors of “self-care” and “patient responsibility,” to become active participants in their own diagnosis and treatments by use of information technology. However, they are no experts and have never practiced “medical judgment.” Therefore, we must ask whether they can make choices on their own regarding the integration of health-increasing measures into their life-course. This begins with relatively simple questions (is a person’s organism equipped to handle a vegan diet or not) to a patient’s dilemma when confronted by two therapy choices in the face of a potentially lethal illness. It is easy to steer patients onto care-pathways, when they are overwhelmed with this kind of information, while they cannot see all the alternatives that may surround the options they are given.

– Doctors diagnose and treat patients they have never even met, using various forms of tele-medicine. Experts rely on medical imaging technology that creates artificial pictures that require interpretation rather than reproduce reality. However, we must ask whether the patient and his/her body that emerge “technologically” really provide an adequate representation of the patient, his/her condition, and his/her suffering.

– Medical informatics is a discipline that increasingly infiltrates hospitals and proliferates the bureaucratization of treatment by replacing the doctor’s trained eye with diagnostic software. Case-management reduces individual patients to bureaucratic units that are processed via software and assigned case-managers, medication, hospital slots, and, of course, bills.

Two underlying trends can be isolated that unite these supposedly unrelated developments, which are in turn studied individually by different kinds of experts in sociology, anthropology, history, and philosophy: Hyperspecialization and universalization. Together, these two trends form the process of increasing virtualization. As a corollary, the “managed case” in modern medicine and biomedical science is slowly turning into the contemporary standard of our human condition, beginning with the fact that every person diagnosed with a pathological state of any kind no longer simply occupies a sick-role but becomes a case file and is thereby realized, reproduced, and reified as a virtual patient.

Biocivics: A Complex-Systems Account for Knowledge/Legal/Bureaucratic Regimes in Public Health

The twenty-first century concept of citizenship has become biological. Regimes of truth and knowledge production have to account for new concepts such as neuro-chemical gaze (Nikolas Rose), biotechnologies of the self (Stuart Murray), or biopolitics (Paul Rabinow). However, academic discussions concerning the biological citizen (Nikolas Rose/Carlos Novas, Aihwa Ong) have been lacking accounts of (a) the effect of long-running conceptual histories and semantics in actual decision-making (semantic agency); (b) the complexity of relations between different individual and collective actors (complex systems); (c) the aspect that biological citizenship is necessarily a concept of active citizenship, which means that it is not a natural kind but a continuous process of becoming that requires learning and education (civics or biocivics); and (d) organizational processes that pre-structure contingencies and options in situations of actual decision and countermand active citizenship and biological autonomy.

Knowledge regimes determine processes of decision-making in legislative debates, health care bureaucracies, diagnostic/therapeutic consultations, or everyday situations involving individual health and well-being. They affect and produce lifestyles, nosologies (classifications of health/illness), bureaucratic procedures, and research programs.

New research into health care, doctor/caregiver-patient relations, and biomedical research must take complex systems research into account as well as conceptual history, the problems of the layman-expert gap, and the semantic properties of agency. It must account for macro-trends, such hyperspecialization, universalization, or virtualization, on the one hand, and micro-level decisions and effects, on the other hand, before mid-range policies, practices, and institutions can become a goal for research toward improvement. In practical application, health-care reforms must account for the causes and effects of virtualization in health care politics and public health that govern biomedical research, the health-care system and health-care education. Instead of proliferating virtualization any further, we need to “bring the patient and the doctor back in.”

We need to understand the “properties” of agency in decision-making in complex health-care systems and legislative processes. And we are not nearly there yet. We need an investigation of the processes and social structures of hyperspecialization and hypergeneralization that continue to govern the emergence of the virtual patient and the managed case. It follows that the virtual patient must be seen as a medium of social change in modern health systems, both on the institutional and the individual level. These effects must be highlighted and made transparent in light of their origin and consequences for processes of decision-making between doctors and patients, within bureaucracies and, most importantly, in policy-making. Finally, we need to open new roads for collaboration in the production of a basis for future research, reform of public health programs and health education (biocivics), lifestyle improvement, such as therapeutic intervention on ADHD, obesity, among others.

Conclusion

This discussion involves the ethics of decision-making in public health and therapeutic regimes between pharmacocentrism and integrative whole-systems perspectives. I am arguing for a pragmatic integrated approach in public debates, policy-making, and the doctor-patient situation, accounting for different environmental influences and individual biological properties of patients. We need a more extensive analysis of the effects that political debates, health-care economics (e.g., consumerism in health care), and virtualization have on health-care, public health, and the bureaucracies and legislation that affect patients and care-givers in light of the policy-decisions that follow.

The effects of the ongoing process of virtualization remain a result of

(a) hyperspecialization, a co-evolution of both, the biomedical profession, modern knowledge-based economy and politics, and the professions that study scientific development, and

(b) universalization, the trend to create categories for diagnosis, therapy, and scientific study that can be easily integrated into bureaucratic processes and the advancement in information technology.

Virtualization is the process that disciplines members of the medical and scientific community, public health legislation, and patients alike, to become fit for the information- and knowledge-based economy of our times. As a consequence, virtualization does not simply change medical practice; it changes the way we think about the human condition. We are in danger of losing sight of actual patients and, as a consequence, of dehumanizing health-care in the process. Technological and bureaucratic advances are meant to work for us as patients; we are supposed to be the ends of the system not its means. If we fail to make the impressive innovations that led to virtualization work for us, we will end up as the means that exist to maintain the ongoing process of virtualization.

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