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Guest blogger Kathy Kastner shares her experience as an SPM member. Her website, Ability4Life, offers resources for participatory family caregivers.

When I first heard the words “Participatory Medicine” I felt fully in synch, even without delving into its practical day-to-day application(s). I heard e-Patient Dave and Danny Sands speak and I was energized by the concept and by Tom Ferguson’s vision. It also seemed that my business — born of a love of finding and filling health communication gaps — would fit and would make me an ideal contributor.

Indeed, in my early days (2010), Charlie Smith surprised me by suggesting a pondering I put forward on the Society for Participatory Medicine’s listserv might make a good article for the Journal. This was very exciting for me, since I’ve never been published in a peer-reviewed journal (would’ve totally wowed my late mother and father). That ponder made me realize I hadn’t been thinking at all of my own participatory journey, but rather capturing insights from others’ journeys. Being published in the Journal of Participatory Medicine opened the door to an interesting (and continuing) exercise in self-reflection, and I am proud as punch to have had a couple more ponderings published (Mom? Dad? You there?).

But that’s not why I’ve stayed. It’s what I’ve learned/am learning from the listserv threads that has me hooked. What I read ranges from the simple (as in, of course!) to the simply astonishing. The mind expanding points of view, insights, experiences, (respectful) debate — peppered with humor, mischief and sometimes downright silliness — keeps me here and hungry for more.

Where my brain’s really gone “zing” is in the depth of education around all things related to electronic medical everything — shedding light and encouraging understanding with points of view from users (professionals and e-patients), creators, and even stakeholders with their own agendas. For me it’s incited a much needed change of focus from “docs need to get with it” to “technology needs to get with it.” I feel like the takeaway from these threads could be/should be the basis of a (to be used productively) fault report for the next generations of Electronic Health Everything.

Then, there’s the evolution of and within the Society itself — its roots grounded, as they are, in an aspirational vision. What’s evolving (in my opinion) is a recognition that what’s necessary (and exciting!) is to dig — one could even say drill — deeper to examine and articulate the various meanings, considerations and practicalities of participatory medicine. With these continuing seminal discussions, the concept of “participatory” seems to me more nuanced than give me my data (which is not, I repeat not, to say that “give me my data” is in any way “simple”).

Why I’m here has shifted from replanting my own garden to learning — and understanding that new gardens need the earth to be readied, seeds to be identified for their staying power, and along the way, to expect some will flourish and others may be stunted and not worth nurturing.

I know I’m out of synch with the official holiday, but I’m giving thanks for the Society, the Journal, and the listserv participants for helping the “garden” of my brain grow.


Please consider supporting the Society by joining us today! Thank you.