Abstract

Summary: The emerging phenomenon of participatory medicine seems to lead to improved health outcomes, but this is not yet supported by a robust evidence base. Fundamental questions about the participation of individuals—sick and well—remain unanswered. Only through the convergence of many diverse and novel modes of research can the richness and complexity of participatory medicine be made workable. We provide here some issues for consideration in the development of such a research agenda for participatory medicine, reflecting our personal interests as physicians. Patients, allied health professionals, researchers, and others will generate questions consistent with their own perspectives that will enlarge and enrich the agenda. This is a field in its infancy that, by definition—and according to the values that drive it—should be developed as a collaborative effort by all stakeholders, charting the course for the journal and the research it publishes.

Keywords: Participatory medicine, HIT, research framework, research methodologies.

Citation: Kvedar JC, Kibbe DC. Building a research agenda for participatory medicine. J Participat Med. 2009;1(1):e16.

Published: October 19, 2009.

Competing Interests: The authors have declared that no competing interests exist.

Why a journal devoted to participatory medicine? For millennia, medicine has been viewed as a professional service during which the recipient sought the knowledge of the expert without question. A confluence of factors is changing that, including an overburdened health care system and inexpensive, fast consumer access to targeted information, technologies, and peer support. And while many of us have a strong hunch that the emerging phenomenon of participatory medicine leads to improved health outcomes, this is not yet supported by a robust evidence base. Although the past decade has invited scientific scrutiny of the role of individual behavior in health promotion, disease prevention, and chronic disease management, fundamental questions about the participation of individuals—sick and well—remain unanswered.

Thus, the task at hand is to understand the value of individuals’ active, informed involvement in their health and health care, and what it will take to ensure that they are able to act on their own behalf. We believe that the answers will come from interdisciplinary research that calls on the knowledge and skills of patients, clinicians, behavioral and social scientists, and health services researchers. And this research must take the form of randomized controlled trials, quasi-experimental designs, surveys, observational studies, case studies, and narratives. Only through the convergence of these diverse modes of research can the richness and complexity of participatory medicine be made workable.

We were pleased to be asked to raise some issues for consideration in the development of a research agenda for participatory medicine. We recognize that the agenda described here is tilted toward questions that reflect our personal interests as physicians. Patients, allied health professionals, researchers, and others will of course generate questions consistent with their own perspectives that will enlarge and enrich the agenda. This is a field in its infancy that, by definition—and according to the values that drive it—should be developed as a collaborative effort by all stakeholders, charting the course for the journal and the research it publishes.

And so we offer here two types of suggestions. The first consists of conceptual questions evoked by the Parameters of Participatory Medicine.

The second list is more specific and concrete. It consists of questions that will be of interest regardless of how the larger conceptual issues are resolved.

Conceptual Questions

1. What does it mean to participate in one’s care? Are there minimum requirements in health literacy and education for individuals to actively participate in their care? What behaviors constitute participation on the part of individuals, when they are sick and when they are well? Participatory medicine refers to the relationship between people and their health care, not how individuals behave relative to their health writ large. Are there as a result specific values attached to “participation”? For example, if an individual educates herself about a medical problem and then acts in opposition to her clinician’s recommendation, is this still participation? To what degree does participatory medicine require the involvement of a clinician? And are certain people exempt from the expectation of participating in their care—for example, someone with dementia? How about someone who is unable to read his prescription bottle? In a system that requires that patients participate if they are to benefit from their care, what supports must be in place to ensure that those who are unable to participate don’t suffer? With the World Wide Web as the largest textbook in history and available to all literate citizens, what is it reasonable to expect patients to know and what tasks will endure for physicians regardless of their patients’ savvy?
2. The view of traditional health care is that clinicians are responsible for the bulk, if not all, decision making in the health care relationship. Participatory medicine opens up new venues for redefining this tradition. The most revered clinicians (often those with the most experience) will tell you how important it is to listen to and take the patient’s wishes and context into account when making both a diagnosis and treatment plan. While the idea of listening to patients is not new, transferring all or some responsibility for their health to them is a concept that requires some examination. What new demands does the imperative for increased patient participation place on the traditional role of primary care providers (physicians, physicians’ assistants, nurse practitioners, and others): merely increased flexibility to respond to more diverse patient demands or significant changes in scope of work? What are the implications for the involvement of other professionals? For specialists? What are the implications for training health professionals to interact with a growing population of active, informed, networked patients? How will these changes shape licensing, board exams, and CME? And what technologies will enable more satisfying relationships between clinicians and their patients? For example, how might the social media aspects of the interactive Web transform the clinical encounter for both clinicians and patients?
3. A wide range of technologies will certainly serve an important function in the expansion of participatory medicine. Where can technology be strategically deployed to relieve physician and patient burdens, thus allowing time for effective interactions among clinicians, systems, and individuals with the aim of improved outcomes? What is the range of system-level technologies and personal tools that can simplify the tasks of self care, communication, monitoring, and reporting? What are the criteria by which those tools and technologies are judged effective, worth purchasing, and worth using?
4. Advances in participatory medicine will take place in systems that are increasingly focused on the quality of care. Is participatory medicine sufficiently well defined to develop performance measures to monitor the extent to which it is delivered? What kind of evidence will be needed in order to do so in the future? What are the implications of participatory medicine for other payment, incentives, and accountability?
5. Fascinating societal questions arise with the consideration of widespread adoption of participatory medicine. Just how much responsibility should and can people realistically take for their health? How should society hold them accountable? Do we excuse from these tasks those with unfortunate genetic aberrations that result in severe illness, for example? What constitutes an accident? Is participation in one’s care an obligation or an option?

Answering these and other questions will lead to a comprehensive, coherent agenda for defining, measuring, understanding, and even bolstering the impact of participatory medicine on outcomes in health care. But that research agenda will be some time in the making. And so in the meantime, based on our own interests, we offer the following examples of questions that can be addressed now (submit your articles here!).

Ready-to-Go Questions

1. Can specific communications and monitoring technologies improve self-care? Improve quality of life? Improve outcomes?
2. Are individuals with chronic conditions willing to routinely make use of tools to monitor symptoms? Does doing so make a difference to their individual health outcomes? How much of the medication dosage and titration decisions currently made by physicians can be reasonably taken on by patients? What are the characteristics of patients who are able to do this?
3. What is the role of coaching in sparking and supporting increased participation over time? What appear to be the “active ingredients” in coaching? How much coaching must be done by people as opposed to an automated coach?
4. What can we learn from research on how social norms shape behavior—with the idea of developing hypotheses on whether social networks could serve as a coaching tool?
5. By what characteristics is it most effective to segment populations to match interventions to them?  Do behavioral economics and choice architecture have a potential role here?
6. What do we know about health communication that could improve clinician-patient interactions and systematize use of those technologies? For example, what health care interactions demand a face-to-face visit vs. online or email or instant messaging? When is video communication ideal? Do various types of media, tools, and peer networking obviate the need for clinician intervention? For people with what characteristics under what circumstances?
7. How will the patient-centered medical home, clinics, virtual support groups, and online care influence the behavior of clinicians and patients, and will those behaviors lead to improved outcomes?

We believe that a health care platform is needed that fosters more participation. For too long, clinicians have made decisions while keeping patients in the dark, with dire consequences for health care in the United States. There are not enough professionals to meet the demands that the current model of care places on them, and most individuals neither know nor feel capable of using their new responsibilities. By encouraging peer-reviewed studies on the extent to which various behaviors, tools, information systems, and other components of participatory medicine affect outcomes, we anticipate that health care professionals will embrace and promote the concept of the patient as collaborator.

Seminal Research Papers on Participatory Medicine

We would like to crowdsource a list of top research papers from the past that demonstrate or otherwise reflect participatory medicine. Please comment below with your suggestions, adding your favorite references, preferably with links and annotations.

Copyright: © 2009 by the author(s). Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, 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.