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Bio-Socio-Technical Underpinnings of Participatory Medicine

Abstract

Summary: Participatory medicine (PM) is facilitated by technology, but a purely technical analysis of their interaction provides only a partial picture. Drawing on a rich body of social science research, this article examines how both socio-cultural and biological perspectives lend additional context and a deeper understanding of the role of technology in PM.

Keywords: Participatory medicine, technology, socio-cultural, transdisciplinary.
Citation: Shen B. Bio-socio-technical underpinnings of participatory medicine. J Participat Med. 2009(Oct);1(1):e7.
Published: October 21, 2009.
Competing Interests: The author has no conflicts of interest to report with respect to this article.

Given the current buzz about so-called Health 2.0 and Internet-enabled participatory medicine (PM), it seems natural to explore the intersection of technology and PM. In doing so, this article will first consider the technical infrastructure requirements of PM, then broaden the analysis to a socio-technical perspective, and lastly locate the discussion in a bio-socio-technical framework.

Technical Infrastructure of PM

To a first approximation, the technical enablers of PM are fairly simple to describe. To the extent that form should follow function, let's adopt for a moment the viewpoint of the patient and start with the "jobs that need to be done"—easy access to trustworthy and relevant health information, assistance in interpreting that information,[1] help with health literacy,[2] secure and private communication with other patients, caregivers and health professionals, ability to make appointments and check test results, connection to peer or patient support groups,[3] sharing of advice, discoveries and work-arounds, and amplification of the often-muted patient "voice" (see New York Times, August 7, 2009: Patient Voices: Type 2 Diabetes),[4] among other needs.

Given these jobs, the consequent functional and technical requirements pretty much suggest themselves. Many of these are related to information technology, and many already exist, which is of course why PM is beginning to come into its own—increasingly broadband Internet connections; highly usable search engines; hack-resistant security and privacy safeguards; and infrastructure for chat rooms, wikis, blogs and other manifestations of user-generated content and the new social media. Some are just emerging, which lends excitement and a sense of anticipation to PM—easier mechanisms for patient data input to reduce the data entry bottleneck; content management services to help patients filter, prioritize, vet, personalize, and make sense of the often bewildering jumble of search engine hits; and tools that assist with medical decision making that help people find "patients like me" or that customize health coaching, among others. And to the extent that patients are beginning to co-create their own care plans, expect to see better tools to enter, manage, and instantiate patients' preferences, health goals, barriers to achieving those goals, risk tolerance, opt-ins or opt-outs, preferred learning styles, and similar information—all of which may change with age, disease stage, or other factors.

But a moment's reflection reveals that things may not be so simple. Although PM is largely patient-centered, many other people may have useful and not always obvious contributions to make. In addition to physicians and other patients, these include nurses, pharmacists, caregivers, therapists and other health professionals, and potentially people who work at diagnostic labs, medical device and pharmaceutical companies, payer organizations, employers' human resources departments, and research and policy centers.

Additional functional and technical requirements flow from this related, but separate, list of jobs that need to be done; for one thing, the larger cast of characters in an increasingly team-based approach to health care highlights the importance of cross-team communication and consultation, smart alerts and escalation mechanisms, and the ability to share data, documents, views, and models of the patient's status. A related category of functionality includes integration with personal health records (PHRs) and the more hospital-based electronic health records (EHRs), as well as both inpatient and outpatient lab, pharmacy, and radiology systems, medical devices, and sensors. And around this core of patient care activities is a penumbra of other systems that could contribute to a comprehensive PM solution: billing and insurance, patient registries, and public domain or national surveys and data sets such as NHANES (National Health and Nutrition Examination Survey), MEPS (Medical Expenditure Survey), HCUP (Healthcare Cost and Utilization Project), and many others from the Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality, and similar agencies.

Indeed, many of these digital databases, decision algorithms, diagnostic devices, and sensors can actually be considered additional, non-human "actors" (to adopt the language of Latour's "actor network theory"[5]) in the PM ecosystem; in certain situations, it may even make sense to include as relevant "actors" plumes of pollution, waves of infectious disease, traffic and weather patterns, and other phenomena well-suited to being addressed via GIS (geographic information systems).[6]

In sum, what we're beginning to describe is an elaboration of the traditional, largely one-way, one-to-one communication between doctor and patient, to a many-way, many-to-many conversation within a complex web of health players. Hess refers to "techno-totemism," the process by which social groups achieve coherence and distinctiveness by being identified with a particular technology[7]; the widely diverse actors in this web communicate with each other in very different tongues—human-human "everyday" language (though that term glosses over many complexities), human-machine interfaces, machine-machine data and transactions standards, human-environmental biochemical processes, and human-pathogen pathophysiological and immunological "communication," among others. Thus, the functional and technical requirements to facilitate this multi-way conversation become complicated, indeed.

Beyond Technical

This leads us to the question: does it even make sense to talk simply about the technical requirements for PM? The US, for example, has no shortage of health technology, yet a recent Commonwealth Fund study found that, "Among eight measures of patient-centered care included on a 2005 survey of sicker patients in six developed countries, the United States ranked first on only one measure and ranked last or tied for last place on six measures.[8]" It seems, rather, to be more useful to adopt a socio-technical approach. First named in 1951 by Trist and Bamford,[9] this analytic lens blurs the user-technology dichotomy to better understand the interaction between and joint optimization of both. As Coiera has said more recently, "We should no longer accept designs that are restricted to technological systems alone, but broaden the scope of design to include social structures,[10]" and indeed, "people and organizational" issues are increasingly gaining recognition in previously technocentric disciplines such as medical informatics.[11][12] It's impossible to do justice to decades of socio-technical thought within the scope of this paper, but for our purposes several key themes are worth calling out below.

Users and technology shape one another

Users often bend technology from its original intended purpose through hacks and "off-label" uses. In this vein, Woolgar, in framing technology as a text, "authored" by the designer with a certain narrative in mind and thus steering the user ("reader") toward an intended interaction, understood the possibility of individual and sometimes surprising interpretations by the user.[13] In the case of PM, witness the sequential repurposing of the original ARPAnet (Advanced Research Projects Agency Network) from defense-related file exchange to personal email, to a highly searchable knowledge archive, to a forum for user-generated health content; or the efforts by some patient advocacy groups to increase access to medications currently approved only for other conditions.

But technologies also shape and reconfigure users. Thus, Latour points out, "Each artifact has its script, its 'affordance', its potential to take hold of a passer-by and force them to play roles in its story.[14]" In the PM context, many patients have been shaped by the Internet to become more active health decision-makers and by devices and sensors to become more focused on their health (eg, the "tyranny" or alternatively, the empowerment of weight scales, pedometers, glucometers, or blood pressure cuffs). As even more complex devices such as insulin pumps, patient-controlled analgesia, or home dialysis machines diffuse into the home setting, patients may begin to blur the distinction between user and technology to the point that Haraway's term "cyborg"[15] becomes apropos. As Wears and Berg remark, "technology changes work practices, which in turn change how the technology is used, which leads to changes in the technology, which induces new changes in work practices, and so on.[16]" In other words, users and technology co-construct each other.[17]

Technology redistributes work

As early as 1981, Illich suggested, "Work does not disappear with technological aid. Rather, it is displaced—sometimes onto the machine, as often onto workers.[18]" Just as ATMs enabled self-service ("participatory") banking, shifting work onto customers in return for convenience, and kiosk and online airline check-in did the same for travel, in health care Akrich notes new "geographies of responsibility"[19] among patients, health professionals, and technology. Star and Strauss originally pointed to a related concept, "articulation work"—the often invisible work done by people "that gets things back 'on track' in the face of the unexpected, and modifies action to accommodate unanticipated contingencies.[20]" In health care, this articulation work is often done by nurses, social workers, scheduling clerks, and office staff; the flip side of increased patient participation in their own health care will be increased exposure to these new responsibilities.

Technology defines "knowledge"

In many ways, PM invokes analogies to user-centered or participatory software design.[21] In this case, the user is the consumer/patient, whose lived expertise with disease still struggles to find voice in the health care design process. Speaking to the relationship between technology and authority, Suchman observes, "Technological change can therefore be an occasion for either the expansion of existing forms of authoritative knowledge, or for their transformation… At the core of this project is the question not only of how information flows, but of who defines what constitutes 'information' in the first place.[22]" And Forsythe notes, "Both builders and users of…systems tend to think of them simply as technical tools or problem-solving aids, assuming them to be value-free. However, observation of the system-building process reveals that this is not the case: the reasoning embedded in such systems reflects cultural values and disciplinary assumptions, including assumptions about the everyday world of medicine.[23]"

On the one hand, technologies related to mobile health and ePROs (electronic patient-reported outcomes) will likely reduce both asymmetry of information and of authority, reinforcing clinicians' appreciation that "evidence-based" medical information may also derive from the patient's lived experience, however idiosyncratic or heterodox it may appear to be from a Western biomedical viewpoint. On the other hand, the history of medical discoveries stemming from concerted patient observations such as Lyme disease, fibromyalgia, and "chemo brain" suggest that the contest for defining what counts as medical knowledge is far from over.

Technology often has unintended consequences

Precisely because technology doesn't exist in a vacuum, but is inextricably situated[24] and linked to "wetware" (users) and their institutions, work practices, and culture, results of real-world implementations often diverge from the rational expectations of the designers. Sometimes these surprises are negative, as in Ash and colleagues’ study of errors actually introduced, rather than prevented, by electronic health records.[25] Sometimes the surprises are positive, such as findings from the University of Colorado that when patients were given access to their medical records, contrary to physicians' expectations, neither their workload nor the nature of their clinical encounters with patients suffered.[26] Whether positive, negative, or more nuanced, it would be a real contribution to the field if both designers and users of PM tools could document and analyze additional surprises or disconnects between vision and practice.

Adding "Bio"

Having explored the value of broadening our perspective on the intersection of technology and PM to include a social dimension, let us finally circle back to the biological conjugates of the socio-technical aspects of PM. Just as it's limiting to talk only of the technical underpinnings of PM without taking into account social or cultural issues, a discussion of only the socio-technical infrastructure of PM without including the biological dimension—the "medical" part of PM—would be incomplete.

Biology is important for our discussion because it both individualizes and collectivizes patients. On the one hand, individuals clearly have unique biologies, ranging from DNA through gene expression through interaction of their metabolic networks with environmental factors, behavioral risks, and disease vectors. Thus, PM tools should facilitate personalized search, filtering, and prioritizing for easier connection to relevant people, information, and resources, such as clinical trials and treatment options, based on factors such as the patient's genetic make-up, disease type and stage, co-morbidities, nutrition, and medical regimen.

On the other hand, a good part of the PM movement to date has involved (often online) groups of patients, many of which are communities based on shared disease—"biological citizenship" as Petryna outlined for survivors of the Chernobyl disaster,[27] biosocial "communities of hope" described by Rose and Novas,[28] or the "genetic citizenship" described by Heath and colleagues[29]. These groups achieve identity through shared biology, whether they inhabit Sontag's[30] "kingdom of the well," "kingdom of the sick," or Frank's in-between "remission society.[31]" Their shared biology creates aggregated demand for socio-technical tools, and this aggregated demand is what lifts participatory medicine from being a personal credo to becoming a movement.

Looking ahead, all three dimensions of the bio-socio-technical framework will coevolve. Genomic research is already beginning to find unexpected connections between diseases previously thought to be unrelated; as diseases are reclassified according to molecular mechanisms and metabolic pathways rather than the presenting symptom or affected organ,[32] biological citizenships will shift and re-assort, and new alliances will form in clinical care, research, and advocacy. Socio-cultural attitudes, norms, and practices will morph; what consumer ratings and "blue book" values did for car shopping, online resources are beginning to do for clinical encounters. And thanks to Moore's Law and corollaries, technical advances will likely continue to raise hopes as well as eyebrows. Whether as members of biological polities, virtual social communities, or techno-totemic tribes, we all can contribute innovations, research, policy, and market initiatives to move participatory medicine from nascent ideal to established fact.

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Open Questions

  1. How else might socio-cultural and biological perspectives enrichen our understanding of the role of technology in participatory medicine?
  2. Are there key technological advances that would make a qualitative difference in the practice of participatory medicine by patients and clinicians?
  3. What are some key policy or regulatory innovations that would catalyze dramatic forward progress in applications of technology to participatory medicine?
Copyright: © 2009 Bern Shen. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

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