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Participatory Medicine: an End to Rational Ignorance in Medicine Gilles Frydman Founder & President Association of Cancer Online Resources (ACOR)
What is rational ignorance? Rational ignorance is a term most often found in economics, particularly public choice theory, but also used in other disciplines which study rationality and choice, including philosophy (epistemology) and game theory.
Ignorance about an issue is said to be "rational" when the cost of educating oneself about the issue sufficiently to make an informed decision can outweigh any potential benefit one could reasonably expect to gain from that decision, and so it would be irrational to waste time doing so. This has consequences for the quality of decisions made by large numbers of people, such as elections or I argue how people deal with medical problems.
Patient-centered care “... Care must be delivered by systems that are carefully and consciously designed to provide care that is safe, effective, patient-centered, timely, efficient, and equitable. Such systems must be designed to serve the needs of patients, and to ensure that they are fully informed, retain control and participate in care delivery whenever possible, and receive care that is respectful of their values and preferences." Crossing the Quality Chasm: A New Health System for the 21st Century (Ref. 1)
Informed patients no longer want to be passive recipients of care. On the contrary, they want to be engaged in the medical decisions affecting their wellbeing. They want access to all the information that can help them understand their medical problems and manage their care. They want to feel free to ask their doctors questions, voice concerns and expect that these will be answered, without fearing retribution from this questioning.
Patient-centered care, adopted by the Institute of Medicine as one of the six aims for the 21st-century health care system (Ref. 2) is a concept of medical care developed and studied (Ref. 3-6) by health professionals over the last 20 years to address this problem. It is now embraced by the American College of Physicians and incorporated in their policy statement regarding the Medical Home (Ref. 7). Although it is a much improved model of care compared to all the models based on the absolute supremacy of the doctors it retains a significant amount of top-down myopic vision. Its principles have not been discussed by or with strong direct input from patients or their legal caregivers but by health professionals who assume they can readily understand the mindsets of patients.
For example the most important of the 4 main principles, information sharing, still assumes that the health professionals are the unique source of appropriate medical knowledge and that patients should only hear about authoritative content regarding their conditions (Ref. 8). Contrast this point with the:
Unfortunately, this concept of patient-centered care doesn't address and doesn't embrace the communication revolution that has taken place over the last 15 years.
Participatory Medicine Starting in the mid 90s a new paradigm of medicine was born ― first as a grassroots movement and then rapidly evolving into a phenomenon of great interest to public health professionals who started early to study its potential impact on the healthcare system (Ref. 14-15). This happened even while this new world of connected and informed health consumers was constantly denigrated by almost all physicians and physician organizations. This new paradigm was a direct child of the concurrent growth of public access to the internet and of the development of medical knowledge systems available freely to all (e.g., PubMed, OMIM, and PDQ Statements). Suddenly, everybody could gain easy and free access to information impossible to find until then, unless you had direct and constant access to the best medical libraries. This fact, associated with the availability of online peer communities profoundly transformed the level of understanding of millions of patients and/or their caregivers about the medical condition that concerned them.
Before the advent of the public internet rational ignorance in medicine was absolutely normal. Then, in a cyber-instant everything changed. The cost of gaining significant understanding about almost any medical condition dropped to zero. At the same time it became clear to many that we just couldn't and shouldn't wait any longer for any centrally engineered improvement of the healthcare system.
Let us fast-forward to 2008. We are still waiting to see any effective centrally engineered improvement of the healthcare system. Many large hospitals are experimenting with new patient-centered systems of care (Refs. 16-17). But we have now, for the last 15 years, been witnessing daily how laypeople, having usually gained a high level of health literacy related to the care of a single condition, can significantly alter the medical landscape for that condition and can eventually develop very significant patient-driven initiatives to further the scientific understanding of the disease. We call this new paradigm participatory medicine where the patients and caregivers are here to remind doctors that to provide better medical care they should always think of the healthcare system as if they were themselves patients. Instead of trying to protect an unsustainable hierarchy of knowledge all health professionals should now learn to love abundance. Abundance of information sources, of lay experts, of communication methods, of source of innovation and of funding mechanisms.
Participatory medicine is a collaborative driven approach to medicine. It is based on the active involvement of the patients and/or caregivers in all aspects of the clinical process to help ensure real shared decision-making where the treatments designed/chosen are understood and meet the needs of the patient. Participatory medicine is a direct consequence of the emergence of the world of networked healthcare consumers (patients or caregivers) and it specifically embraces these consumers as a major source of timely and accurate information regarding a specific medical condition. For unusual conditions these specialized consumers may easily be the main source of this information, usually very hard to find. For example, the rare cancers disease-specific online communities are almost always the best source of the most current, timely and accurate information regarding new clinical trials, approved treatments and access to the best specialists, among many other benefits. And they are surely the best place to find information impossible to find anywhere else, including patient reports of unreported cases of adverse events, rare side effects or even effects of dose changes, long before these are reported in peer-reviewed publications.
Informed patients who belong to these online communities can really have an informed conversation between equals with their physicians and we believe that they represent the best examples of the benefits of patient-centered care. In countless cases, these patients have been able to direct their treating physicians to new studies, new treatments, new knowledge that understandably is not readily available to an average modern doctor, already too busy running his/her office. By fulfilling, at least in part, the role of knowledge gatherer these patients/caregivers help to optimize the medical care they receive, without adding any additional burden to the already broken healthcare system we all face. By constantly talking to others with the same condition and asking for feedback, these connected healthcare consumers avoid countless unnecessary office visits, fulfilling some of the old promises of the self-help movement. I contend that the advent of participatory medicine, although clearly in its infancy, has already had a significant economic impact, a fact that no one has seriously studied or challenged. The time has come to invest research funds in this area.
References 1. Crossing the Quality Chasm: A New Health System for the 21st Century, Committee on Quality of Health Care in America, Institute of Medicine, The National Academies Press, ISBN-13: 978-0-309-07280-9. (Click here to read the online version).
2, Ibid, page 6.
3. Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care, The Picker Institute, 1993; ISBN: 978-1555425449.
4. Patient-centered Medicine: Transforming the clinical method. Stewart M, Weston WW, Brown JB, McWhinney IR, McWilliam CL, Freeman TR, Thousand Oaks, CA: Sage Publications; 1995.
5. The patient-centered clinical method. 2. Definition and application. Brown J, Stewart MA, McCracken EC, McWhinney IR, Levenstein JH, Fam Pract 1986;3:75–79.
6. The impact of patient-centered care on outcomes. J Fam Pract, 2000, M Stewart, JB Brown, A Donner, IR McWhinney, J.
7. The Advanced Medical Home: A Patient-Centered, Physician-Guided Model of Health Care, ACP, January 22, 2006
8. The Thriving Practice: Patient-centered care. Monograph. August 2007. American Academy of Otolaryngology-Head and Neck Surgery.
9. The Effect of Conflict of Interest on Biomedical Research and Clinical Practice Guidelines: Can We Trust the Evidence in Evidence-Based Medicine?, John Abramson, MD, MSFP and Barbara Starfield, MD, MPH, The Journal of the American Board of Family Practice 18:414-418 (2005);
10. Vioxx Documents Offer Glimpse Into Ghostwritten Manuscripts, "Hire-A-PI," and Data Manipulation, Heartwire — a professional news service of WebMD, April 16, 2008
11. Conflict of Interest Controversy Casts Cloud Over Research Into CT Scanning for Lung Cancer, Medscape Medical News, March 28, 2008
12. Medical Integrity Up in Smoke? Conflicts of Interest and the Lung Cancer Screening Controversy, Beverly Moy, The Oncologist, Vol. 13, No. 5, 474-476, May 2008; doi:10.1634/theoncologist.2008-0098
13. How Do US Journalists Cover Treatments, Tests, Products, and Procedures? An Evaluation of 500 Stories, Gary Schwitzer, PLoS Med 5(5): e95 doi:10.1371/journal.pmed.0050095
14. Alone together. Cancer patients and survivors find treatment –and support- online. It can make all the difference. Laura Landro. Oncologist 1999;4:59-63.
15. Virtual Connections: Internet Health Care. Richard T. Penson, Renee C. Benson, Karen Parles, Bruce A. Chabner, Thomas J. Lynch, Jr, Oncologist. 2002;7(6):555-68)
16. Running a Hospital, Blog, Paul Levy, President and CEO of Beth Israel Deaconess Medical Center in Boston; See all entries on SPIRIT BIDMC; http://runningahospital.blogspot.com/
17. Ted Eytan, MD. e-Health. Patient empowerment. Washington, DC., Blog; See all entries on LEAN; http://www.tedeytan.com/tag/lean
18. Health Literacy: A Prescription to End Confusion; Lynn Nielsen-Bohlman, Allison M. Panzer, David A. Kindig, Editors, Committee on Health Literacy, The National Academies Press, April 2004; ISBN-13: 978-0-309-09117-6 (Click here to read the online version)
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