Sunday, June 2, 2013

The Scope of Participatory Medicine--Does it really include Everyone?

Several of my colleagues recently joined me in writing a new chapter to add the White Paper: "E-Patients.  Can they help us heal Health Care?.  This chapter was recently published in the on line Journal of Participatory Medicine, titled "A Model for the Future of Health Care".  The paper describes a health care system where patients and providers participate as partners, with patients largely in control of their own health.  The authors encourage you to open the link, read the paper and add your comments  at the end of the paper.  We would benefit from your feedback!

I asked several friends and colleagues to read and comment on the paper and the responses I got were interesting and a little unexpected.  To summarize, they said:  "This is all well and good, but some patients, even educated ones, just aren't interested in the "participatory" model".  Their point was that many patients trust their providers and don't have the energy or motivation to do on line research, prepare questions for the office visit, or even track their own lab results.  They just want to visit their doctor periodically and hear their recommendations and follow them!

The other feedback theme was that there are still many patients who don't have the health literacy or the technological wherewithal to function as participatory partners in their health.  These are the disabled, poor and disenfranchised.  They don't have smart phones, data plans, lap top computers, ipads or wireless internet access.  Many of them hardly know how to read, much less understand the often complex health discussions found online.

So, in spite of an engaged, activated, increasingly empowered cadre of e-patients out there, those of us in the Participatory Medicine movement have a big problem we need to address:  What do we do about the able but unmotivated, uninterested group and how do we addressthe poor and disenfranchised?

Your thoughts, comments, and expressed opinions are greatly appreciated!

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