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Why I joined SPM – and why maybe you should!

John HobenGuest post by John Hoben, who joined our Society in 2014 and has been a major contributor to discussions on our member listserv. He recently joined our board of directors. He has a particularly great story – he actually met Doc Tom long ago! – and I asked him to capture it here for our occasional Why I Joined SPM series.

In July 1995, Faulkner & Gray Publishing (now Thomson Reuters) asked me to edit and co-author a new annual series on health care resources and the Internet.  This invitation led me to attend The Annenberg Retreat at Sunnylands where I met “Doc Tom” Ferguson, whose followers, after his untimely death in 2006, founded our Society for Participatory Medicine (S4PM or SPM).

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Meet Donna Cryer, new co-chair of SPM

Donna Cryer from The AtlanticAt 10 ET today (Feb 25) Donna will be a guest at the White House Precision Medicine Initiative, with several other members of our Society. Watch it on livestream. See also our post on the PMI event a year ago by then-president Nick Dawson.

I’m thrilled to announce that after seven years as founding co-chair of the Society for Participatory Medicine, I’m transitioning to a new role as Chair Emeritus, so that Donna Cryer JD can become the new Patient Co-Chair.

Donna is astounding. See her bio on our society’s website: she’s an accomplished attorney, health policy advocate in Washington, and seriously experienced patient: not just one medical adventure, but IBD plus a liver transplant plus (this past year) bilateral knee replacement. She, like me, is a lifetime member of our Society; she joined the board last year.

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Join the #ScopeScope, March 1, to help Fight Colorectal Cancer

Lee Aase photo

Lee Aase (external view)

This is a hoot. I say this as someone who first blogged in 2008 about this process.

On Tuesday March 1, Mayo Clinic will be streaming video of a colonoscopy, live on Periscope, in a broadcast they’re calling The #ScopeScope.

Lee Aase, head of the Mayo Clinic Social Media Network, has volunteered to be the patient. Yes, he’s going to Periscope his ‘scope. #ScopeScope!

Here’s his blog post about it. The publicity, and the “strong-arm” YouTube, is all about getting people to stop worrying about colonoscopies (it’s really not an obnoxious experience) … for better health.

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Participatory Medicine: An Administrator’s Point of View

Mark ReifsteckGuest post by Mark Reifsteck [left], who joined our Society in 2014. Follow him on Twitter at @MarkWReifsteck. To become a member, individually or organizationally, see our Join Us page.

It started innocently enough: I made an off-handed comment on the SPM member listserv about tone-deaf (my term) administration of a healthcare institution, which prompted a friendly exchange that resulted in a challenge to me to write something about how healthcare administrators can promote participatory medicine in their organizations.

Which got me thinking.

I have been in senior executive roles in hospitals and health systems for more than 30 years, I am not clinically trained; rather came up through a traditional healthcare administration program that trained primarily, though not exclusively, non-clinical folks like me.

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Scholarships available to e-patients for palliative care summit


The Coalition for Compassionate Care of California (CCCC) is inviting e-Patients to apply for a scholarship to their 8th Annual Summit in Newport Beach, California, on May 12-13, 2016.

The deadline to submit an application is March 10, 2016. Learn more and apply here.
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New England SPM members: free admission to 3/29 local HIMSS meeting

NEHIMSS event pageSPM members Janice McCallum and Pat Rioux are also members of the New England chapter of HIMSS, the gigantic Health Information Management Systems Society. They have arranged a special deal for SPM members: free admission to their March 29 meeting (if you register by 3/18).

SPM co-founder e-Patient Dave will be the featured speaker. The topic is a mixture of two hot topics in the world of patient-driven health data:

#WeAreNotWaiting meets #GMDD:
Withholding our data cannot last!

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Evidence! New S4PM Survey Shows People Want to Collaborate with Their Doctors and Co-Produce Their Clinical Data

A fundamental precept of participatory medicine is that health care should not be a spectator sport—it’s best practiced in a participatory manner. This requires engagement from both the patient and the clinician.

Yet the typical behavior of health encounters is not that. Too often, physicians still refuse to openly communicate, share information with patients, and partner with them in decision-making, and patients still assume a passive role, thinking that in some way they can get healthy without being engaged. This disengagement from both sides is what I call the “car wash” model of health care, in which the disengaged patients passes through the health care system and gets “health” sprayed on them by health care professionals. This model is not efficient, effective, or satisfying. But many, myself included, thought that that’s how many people think about their health care.

So it was quite gratifying to see the results of a new Society for Participatory Medicine survey. The survey, fielded by ORC International, a professional survey firm, asked 1000 adults five questions. We’re publishing the results in this downloadable PDF infographic: (Click to download)

SPM Infographic on Partnerships and Self-Monitoring FINAL
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Proposal for a TRULY patient-centered medical record

Peter Elias MD viewing medical record with patient

SPM board member Peter Elias MD viewing medical record with patient

The other night I participated in a very useful Google+ hangout with SPM members Adrian Gropper and Michael Mascia, and Michael Chen [of NOSH, explained below]. The discussion focused on a subject I think is incredibly important: the patient-centered health record.

Really: patient-centered. Like, built around the patient – not a provider system built with supposed “patient-centered” thinking.

This topic is hard to discuss without drowning in technical terms and acronyms. I consider myself fairly tech-savvy and still struggle. So I’m going to describe the idea first without tech terms or acronyms, and then with some of the key jargon added, so more technical readers can see what we’re specifically proposing.

The 55 minute YouTube replay of the hangout is embedded at the end of this post. I think it is worth watching. Before watching it, consider reviewing the following basic information to help set the stage.

Our situation today

The current EHR model is that each office or institution owns and manages an electronic record that contains information about the patients in that system. Despite the obvious need and lots of talk, there has been little actual progress towards making these separate and mostly proprietary systems ‘interoperable’ and therefore able to share information. The result is that
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John Q. Sherman Award in Patient Engagement: Nominations Open

SPM plus EngagingPtsOur Society for Participatory Medicine is a partner with Founded in 2013, Engaging Patients is particularly focused on the communication aspects of participatory medicine. They asked us to share this announcement.

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NEJM opens access – discuss! Time for a Patient-Driven Health Information Economy?

NEJM Mandl articleA Twitter chat this morning, prompted by SPM member John Sharp, produced a rapid and wonderful change in an ongoing problem: so often articles about patients aren’t open to patients. In this case it’s an intriguing new article today in the esteemed New England Journal of Medicine: “Time for a Patient-Driven Health Information Economy?”

Well, tweets sent to lead author Ken Mandl led within an hour to them opening access!

Your assignment: go make it worth their effort – go read it, think, and if you have something to contribute on the subject, comment! (That’s the “Submit a Letter” link on the sidebar, as shown below. Or, of course, discussion here is welcome, or on Twitter, or Facebook, or LinkedIn – publishers love it when their articles get traction on social media.)

NEJM submit a letterA special hat tip for wisecracking goes to SPM Board Member at Large Peter Elias, a recently retired primary care physician, for popping up on Facebook with the New Yorker cartoon below. :-)

New Yorker william-haefeli-we-want-to-include-you-in-this-decision-without-letting-you-affect-it-new-yorker-cartoon


Seriously – go read.

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