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Summary: All medical and health care is intensely personal: one patient, one professional, one moment, one decision. The patient is best served by fully participating. With American health care reform imminent, participation for self-preservation becomes even more important.

Keywords: Participatory medicine, personalized medicine, health system reform, change.

Citation: Lundberg GD. Why health care professionals should practice participatory medicine: perspective of a long-time medical editor. J Participat Med. 2009(Oct):1(1):e3.

Published: October 21, 2009.

Competing Interests: The author has no conflicts of interest to report with respect to this article.

Change is everywhere. We are all caught up in its swirl. People (including health care professionals) respond to change in three basic ways. Some fear it, fight it, and lose; others fail to recognize change and are swept away by it; and still others seek it, recognize it, harness it, guide it, and eventually, win with it. I recommend the latter as the best option. The need for patients,  physicians, and other health care professionals to be quickly informed about change makes the launch of the Journal of Participatory Medicine (JoPM) very timely.

The American health care “system” is extraordinarily complex and confusing. If this system is ever going to be fixed, it will not be fixed by government, although government will have a role; it will not be fixed by the insurance industry, although it may also have a role; and it will not be fixed by employers, although they, too, might have a role. Whatever roles these entities play, the essential solution requires participating physicians and other health care professionals to work together with patients in a friendly alliance.

One challenge that health professionals will face in the era of participatory medicine is how to deal effectively with the incredible diversity of our nation, and communicate with persons along a broad spectrum of financial resources, language, culture, education, literacy, and technological ability. These significant differences will greatly affect the extent to which individuals are likely to participate in preventing, recognizing, and managing their diseases and conditions. We need to create tools and processes that encourage and enable everyone to adopt a shared decision-making model. Physicians and other health care professionals must be keenly aware of health literacy, language, and cultural variability, and must adjust their communication style with patients to enhance the clarity of their interactions. While diversity is a great opportunity, it can also present difficulties such as  lack of health insurance, adequate access to physician care, and access to (and ability to use) the Internet.

On the other hand, the American health care system can also be viewed as extraordinarily simple. Just as it has been said that all politics is local, all medical care is also local—and intensely personal. One patient, one health care professional, one moment, and one decision at a time, which is rightly a shared—a participatory—decision. Individuals should take charge of their health. After all, it is their health.Whereas a minority of people has long taken an active interest in their own health and illness, the Internet has significantly increased that number. While this phenomenon is mostly positive, it also has some negative consequences. For example, direct-to-consumer advertising by pharmaceutical companies has led to patients requesting prescriptions for expensive new drugs that they may not need, but which physicians may feel pressured to prescribe anyway. In addition, active online discussions about diseases or symptoms may be well-intentioned, but they are often misguided and can pose a risk of driving health professionals to undertake inappropriate and unnecessary medical actions. Professionals, as well as the public, need to be committed to following evolving best evidence, so we will not be swept away by well-meaning, but scientifically flawed, consumer demand.

How will participatory medicine play out in the exam room, between patient and provider? Two major advances—the Internet and the Human Genome Project—are fueling the recent concept of “personalized medicine.” Every time a patient and a direct care professional choose and apply a diagnostic or therapeutic intervention, that patient and the effects of that intervention can become an experiment with a result, indeed, a de facto clinical trial with an N of 1. This quasi-experimental process can be accomplished in any clinical setting if physician/patient encounters are electronically documented and reported and if the results are followed and shared. Such individual encounters could grow into a massive database to enable us to determine the effectiveness of a vast range of diagnostic and therapeutic interventions. Nowhere is this more likely to happen than in cancer diagnosis and treatment where, almost daily, discoveries are made about the molecular nature of individual cancers with unique genetic makeup.

One of the best ways to accomplish this expanded quest for new medical knowledge is for patients to participate with their physicians in an open sharing of their active medical record. Vast amounts of currently unshared data grouped with countless other experiences ultimately can shed both ethical and clinical light. Such prompt, open, and careful sharing of experiences by cooperative health providers and fully informed and consenting patients constitute the shared vision of the JoPM.

One of the biggest questions we will need to grapple with is how to apply the participatory medicine movement to improving care for uninsured patients. The Journal of the American Medical Association (JAMA), which I edited from 1982 to 1999, focused attention on caring for the uninsured and underinsured beginning in 1990, and dedicated entire issues every May for years to solving this problem. In my 1991 editorial, I noted that there were 33 million uninsured Americans on any one day. Now, the accepted number is closer to 47 million. Obviously, our efforts, and those of so many others, failed. Can participatory medicine lead to development of tools or other approaches that will help deliver health care to this population?

The reasons underlying the need for health care reform emphasize an urgent need for participatory medicine. However, although there are two widely expected elements of any health reform platform—cost and quality—health care is more nuanced than that, and involves aligning the interests of patients, doctors, hospitals, insurers, pharmaceutical and medical device companies, and regulators. If we had an ideal health care system, how would we know? Nothing pleases everyone. No reformed health care system is likely to be perfect. But what is as good as we can reasonably expect? Can participatory medicine contribute to a more rational use of medical resources, directed toward appropriate clinical application of medications and procedures? Medicine in the US has become extremely proficient at many technically advanced diagnostic and therapeutic methods. However, they are often applied—very competently—to patients who don’t need them at all. Can participatory medicine improve this situation? One way perhaps, is by facilitating actual informed consents (not merely legal rote signings) for therapeutic and diagnostic procedures, including screening tests and procedures.

In 1994, I published a grid in JAMA to help measure the strengths and weaknesses of any health care system across 11 parameters. To assist in judging US reform plans, I have updated that grid. This involves examining a plan for its relative strength in 12 categories, indicated by the questions below, and assigning each category a grade from 1 to 8, with 8 points being the strongest. So, a nearly perfect score would total 12 times 8, or 96. Of course, there is no way that this grading system could ever be “validated” since it attempts to represent and balance vast conflicting societal, political, and professional characteristics. (Note that opportunities for participatory medicine are represented throughout with perhaps, the greatest appearing in questions 2, 3, 5, 6, 8, 9, and 10.)

  1. Does the health system provide access to basic care for all?
  2. Does it produce real cost control?
  3. Does it promote continuing quality and safety?
  4. Does it reduce administrative hassle and cost?
  5. Does it enhance disease prevention?
  6. Does it encourage primary care?
  7. Does it consider long-term care?
  8. Does it redress health disparities?
  9. Does it retain necessary patient rights?
  10. Does it safeguard physician autonomy?
  11. Does it limit professional liability?
  12. Does it possess staying power?

This “health care vitality index” is a semi-quantitative guide to help highlight differences between health care reform proposals and to judge the performance of the health care system as a whole. In 1994, we scored the American health care system at 55, a pretty sad result. Using this index, I score our current health care system at 42, considerably worse in 15 years!

There are 12 key indicators, all important to varying constituencies and to the country as a whole. They also help the participating health care professional and patient alike make some sense out of an otherwise baffling task. The index allows one to compare and contrast specific criteria within any current or future health care proposals, and to distinguish those with teeth from those that fall short of a passing grade.

However, even with the passage of extensive health reform legislation, the participatory medicine model will be necessary to truly reform medical care in the most meaningful way. And, if no comprehensive reform passes, patients and health care professionals will have even more reason to pursue a participatory model to try to improve our broken system.

It is my hope that the Journal of Participatory Medicine will advance this by enhancing physician and patient self-awareness and cultural understanding that will blunt biases and improve communication. The journal has an opportunity to create and to showcase these opportunities appropriately; the time is right; the future is there to be seized. I wish the field of participatory medicine the best and hope it can prevail.

Open Questions

  1. The author indicates that fixing the health system will require friendly alliances between providers and patients. What are some of the ways these alliances will serve to help reform the broken US health care system?
  2. How can Dr. Lundberg’s Health Care Vitality Index help us assess the impact of Participatory Medicine on our broken health care system?
  3. What tools and systems will need to be put in place to realize the author’s vision of creating a massive database of doctor/patient experiences to document the benefits and positive outcomes of participatory medicine?

Copyright: © 2009 George D. Lundberg. 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.