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Inaugural Emerging Leader Award from CCFA- DC Chapter for Carly Medosch

(photo credit to Nikki Piner)

Carly Medosch (photo by Nikki Piner)

Society for Participatory Medicine member Carly Medosch and her mother Mary Jo have run the Crohn’s and Colitis Foundation of America’s Fredericksburg, VA support group for the past 6 years. Crohn’s disease and ulcerative colitis are two forms of imflamatory bowel disease (IBD) – conditions with chronic or recurring immune response and inflammation of the gastrointestinal tract. There is no cure for IBD.

After becoming an unofficial local welcome wagon for people newly diagnosed with IBD, the Medosches decided it was time to start an official local group. Although the first meeting was attended by just three people (including the two facilitators!), the roster now includes over 40 people, some of whom drive over an hour each way to attend. Carly believes in the immeasurable value of finding people who understand life with chronic illness. She is honored to help facilitate a group that provides a safe space for so many patients and caregivers.

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WHO in Geneva – SPM in the house!

SPM member Casey Quinlan (who’s posting this) was invited to attend an event at the WHO in Geneva. This post originally appeared on her Mighty Casey Media blog, and is reposted here in its entirety by SPM request.

Guess who got invited to WHO? No, really.

The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation.

WHO_signsI spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.

This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing.

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What has happened to the Personal Health Record?

By Nancy B. Finn

There has been so much discussion online and in the press about electronic health records and physicians sharing EHR data with patients via such tools as OpenNotes and Blue Button, that the personal health record (PHR) has been lost in the dialogue.

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Mayo chief residents name SPM patient as Visiting Professor in Internal Medicine

Wikipedia says “Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as  full partners.”

That movement gets a big boost in credibility today: the Chief Residents at the Mayo Clinic have invited SPM co-chair “e-Patient Dave” to be their Visiting Professor in Internal Medicine next March. The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post.

Their press release:



“A union of forces between providers and patients”:
Mayo chiefs name a patient as 2015 Visiting Professor

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WSJ: “Researchers are asking patients to help design clinical trials.”

I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the “European ASCO” cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo!

The lede:

Scientists regularly sign up patients in clinical trials to test new treatments. Now, they are seeking patients to help them design some of those trials.

Patients and researchers can bring different perspectives to treating disease …

Screen capture of Wall Street Journal

It seems clear that medicine is starting to act on the Institute of Medicine’s mandate in Best Care at Lower Cost:

A learning healthcare system is anchored on patient needs and perspectives.

Doesn’t this dovetail deliciously with the presentation I blogged about on my own site, on involving patients earlier in the research process?? Imagine: Scientists asking patients what they think is important!

Clearly, science is starting to act on the realization that patients are no longer the passive beneficiaries of what scientists think.  (It also matches nicely Laura Landro’s front page WSJ piece in June, “Health-Care Providers Want Patients to Read Medical Records, Spot Errors”.

This is a major shift in the wind, and it’s spreading. Watch for more of this in the coming months.

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Remembrance in New York: “Jessie Gruman, the Force”

Yesterday at the New York Academy of Medicine was the first of Jessie Gruman’s two remembrance events, which we blogged about. Here’s a view of the gathering, which was followed by a reception.

Jessie's gathering 10-5-14 at New York Academy of Medicine

Jessie’s gathering 10-5-14 at New York Academy of Medicine

It was a fitting, moving, great tour through her life, with short talks by many people who knew her: Jessie the Child, Jessie the Adolescent, Jessie in Israel, in New York, at CFAH, Jessie the Patient, the Advocate, the Traveler, the Sister, the Friend. And Jessie and Richard (Sloan), her soul mate and husband of 34 years; and the last, titled “Jessie, the Force.”

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New on JoPM: “e-Patients Never Retire”

Screen capture of article headlineToday in our Society’s journal, SPM co-founders Joe and Terry Graedon of PeoplesPharmacy.com posted something I couldn’t agree with more:

e-Patients Never Retire

That’s kinda by definition, eh? But there’s an uppity Sixties edge to this, and with this too I couldn’t agree more.. Excerpt:

Older patients have something to tell their health care providers: look at me; listen to me; and speak with me rather than to the person who may have come with me to the visit. Gray hair doesn’t signal senility.

What’s your experience been? Have you met up with doctors, nurses and office staff who could use a wake-up smack on the side of the head?

Of course I recommend first saying courteously how you’d like to be treated: be self-aware and be empowered: speak up and say how you’d like to be treated. And physicians and staff, realize: a generation ago 80 may have often seemed “feeble,” but not so much, anymore.

The times, they are a-changin’!

 

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The diverse nature of patient communities: a prostate cancer patient’s experience

On my own site I have a (loose, rough, poorly managed) list of patient communities, gathered ad hoc, as time allows. Today I posted a new contribution of a different sort – the experiences of a prostate cancer patient I met at a speaking event last week in Vermont. He’s involved with three different communities, and his insights about the differences are useful.

The diverse nature of patient communities: a prostate cancer patient’s experience

Should SPM develop and maintain a list like this?  Who would do the work? Heaven knows my list is disorganized and needs housekeeping – I’d be glad to have someone do a better job of it!

 

 

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Jessie Gruman: Poetry in Motion

This essay was written by Sarah Greene, co-founder of the Journal of Participatory Medicine and currently Founder/CEO of RapidScience.org

“That the powerful play goes on, and you may contribute a verse.”

- Walt Whitman, ‘O Me, O Life’

We New Yorkers have been marveling at the beautiful weather bestowed on us this summer, and yet the dark and heavy cloud of Jessie’s leave-taking on July 14 has kept me in a months’-long swelter.  I think Jessie would have dubbed this an ‘Aftershock’, although in her book of this title the heroine returns to offer sage learnings after jousting with the Grim Reaper.

I’ve found inspiration, if not solace, re-reading her writings in books, the Prepared Patient blog, and various other essays, and have witnessed her grace again in the “Good Behavior!” videos. Not to mention the many eloquent tributes to her legacy at the Center for Advancing Health, where I was honored to serve as a trustee, and at the Journal of Participatory Medicine (JoPM), on which we worked closely in its infancy.

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(Video) Larry Weed, father of the Problem Oriented Medical Record – Grand Rounds, 1971

Screen capture of Larry Weed delivering 1971 Grand RoundsStudents of medicine (surely most MDs) will know the name Larry Weed, but I didn’t until a few years ago on this blog, when I learned that in 1999 our founder “Doc Tom” Ferguson gave Weed an Outstanding Achievement Award.

In the late 1960s Dr. Weed created the concept of the POMR: the Problem Oriented Medical Record, and the corresponding concept of SOAP Notes (Wikipedia). Physicians have told me that these ways of organizing medical thinking truly revolutionized the practice of medicine – I’d welcome discussion in the comments.

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