Original post can be found at Project Health Design
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
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
Do our evolving notions of what health care and participatory medicine
need to become include the realities in which patients live?
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.
1) Cybercitizen Health v8.0. 2008. New York, NY, Manhattan Research.
2) E-Health Solutions for Healthcare Disparities. New York: Springer Pubs; 2008
3) Cybercitizen Health v9.0. 2010. New York, NY, Manhattan Research.
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.
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.