Participatory Medicine 2.0

Michael Christopher Gibbons, M.D., M.P.H., Project HealthDesign National Advisory Committee, Johns Hopkins Urban Health Institute

Editor's note: This post is fourth in a series about patient engagement.

In “Participatory Medicine: Must You Be Rich to Participate?” in the Journal of Participatory Medicine, Graedon and Graedon pose a question: “Is the participatory movement leaving [the non-affluent] behind?” Their article suggests that only the affluent members of our society can afford care that is participatory. Their premise appears to be built on two assumptions that should be regarded as faulty.

Redefining patient engagement

The first is that the only engagement relevant to the participatory community is the engagement between a patient and a clinical provider. The primary causes of morbidity and mortality in contemporary society are chronic diseases.  By definition, individuals have these ailments for up to 30 or 40 years. Antecedents of atherosclerosis (fatty streaks) have been documented in 10-year-old children (5), yet most individuals only become aware of the existence of a problem after the age of 50. As such, the actions, behaviors and exposures that impact health begin early in life and are often the result of engagement with a vast array of individuals (relatively few of which are medical providers). In addition, most patients are actually in clinical settings for a relatively short period of time over the course of their lives. In other words, most of the interactions, or participation, that govern the important behaviors that impact health occur outside of the clinical setting and between patients and non-clinicians.

This reality is in no way an attempt to downplay the importance of either clinical encounters or clinical providers, but rather an attempt to illustrate the fact that when we fail to understand the full context of participatory medicine, we may similarly fail to understand the true barriers, drivers and opportunities for participatory medicine to make a difference.  More importantly, we may also be unable to fully understand why patients have such difficulty achieving clinical goals or why well-intentioned and elegantly designed interventions yield only marginal results. In fact, emerging data suggest that patients are participating in their health care in a big way, just not as much with their health care providers.

Patients turn to the Internet for health information and support

For the first time ever, more Americans are turning to the Internet for health and medical information than are turning to health care providers.(1) In addition, emerging evidence suggests that the Internet has considerably more influence over consumer health decisions and actions than traditional channels like print, TV and radio.(3) The numbers of online health seekers have swelled to more than 175 million people to date.(6) Increasingly, they report having become informed and empowered. They have generally been able to find what they are looking for and report that the Internet is increasingly helping them to connect to emotional support and practical help for dealing with their health issues.(2) In fact, racial and ethnic minorities and the poor appear to be using some forms of technology more than their non-minority counterparts.(4)

We can argue and speculate as to why these things are happening or the long-term impact of these shifts, but the reality is that these shifts are, in fact, happening. These changes may represent an important opportunity to reach and engage many patients, including those who historically have been left behind. The most important questions then become:

1. Do our evolving notions of what health care and participatory medicine need to become include the realities in which patients live?
2. Will current and future health care providers embrace these realities and lead the inevitable change?

If not, we may be destined to well-intentioned but largely unrealistic notions that ultimately leave the health care system far behind where many patients are already going.

References

1. Cybercitizen Health v8.0.  2008. New York, NY, Manhattan Research. Ref Type: Report
2. E-Health Solutions for Healthcare Disparities.  New York: Springer Pubs; 2008
3. Cybercitizen Health v9.0.  2010. New York, NY, Manhattan Research. Ref Type: Report
4. Korzenny F, Vann L. Tapping into thier connections: The multicultural world of social media marketing.  2009. Talahassee, FL, Florida State University Center for Hispanic Marketing Communication. Ref Type: Report
5. Tanganelli P, Bianciardi G, Simoes C, et al. Distribution of lipid and raised lesions in aortas of young people of different geographic origins (WHO-ISFC PBDAY Study). World Health Organization-International Society and Federation of Cardiology. Pathobiological Determinants of Atherosclerosis in Youth. Arterioscler Thromb 1993; 13(11): 1700-10
6. Taylor H. Cyberchondriacs on the rise? [electronic article]. 2010.

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