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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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Astounding #RareDisease e-patient story: Jill Viles, via @SusannahFox tweets

Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s health research. (For a summary of her work see the Pew Health Tips page.) So anytime she says “Everyone. Read this” I stop what I’m doing.

She said it an hour ago, so I did. Here’s the sequence of tweets she posted. The story is an astounding demolition of the idea that patients have nothing to offer. Here’s the real story, told by ProPublica and This American Life.
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2016: Opportunities and Challenges in Health Care

In 2016, mHealth technology will occupy center stage in transforming clinical care and clinical research.  Smartphone-linked wearable sensors will turn science fiction into reality as these mobile diagnostic tools provide the in depth information that enables    patients and clinicians to experience more accurate, continuous streams of information that will help them make better informed health choices.
In 2016, Telemedicine in combination with wearable sensors, robotics and advanced diagnostic and surgical capabilities, will enable physicians and patients in under-served and remote areas to experience top quality medicine. Additionally, many more eVisits, based on telemedicine technology will change the dynamic of the patient/clinician relationship.
Big Data, currently in its infancy, will expand and begin to supply the analytics and storage of information needed to enable precision medicine which specifically takes into account individual variability in genes, environment, and lifestyle and tailors medical treatment to the individual characteristics of each patient.
Robotics will continue to radically change the way many surgical procedures are conducted and will expand into healthcare tasks of all kinds from helping patients cope with illness at home, to dispensing drugs, supplies, food service and more throughout the hospital and other health care sites.

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Individuals’ Rights to Their Health Information: The Federales Awaken

pcIVFA-1A long time ago (in internet years), the original HIPAA regulations were promulgated. (The final Privacy Rule was published in 2000.) They’ve been tweaked and updated over the years, most notably in the “mega-reg” promulgated a few years  back in order to implement the updates included in the HITECH Act. For purposes of the present discussion, I am interested in the patient right to medical record information included in HIPAA, rather than privacy and security protections for patient data. The core elements of the HIPAA rule relevant to patient access to medical records have not changed since the rule was originally promulgated. That original rule did not expand all that much on the access to records rules in some of the more enlightened states in the Union, though it has pulled up some of the laggards. The HITECH “mega-rule” made only a minor change to this rule with respect to records stored off-site. read more…

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Regina Holliday and the Walking Gallery are in AMA Journal of Ethics

AMA Ethics article screen capture

Click to access the article (open access)

One sign of a movement’s progress is when the establishment takes notice. This one’s a biggie: Regina Holliday’s Walking Gallery of Healthcare (Facebook) is in the January 16 edition of the AMA Journal of Ethics. A five page article! Click the image to view it.

We’ve said since the founding of our society that participatory medicine is a movement – a social movement. One of the most conspicuous signs of this movement has been the artist / activist @ReginaHolliday and her Walking Gallery of Healthcare – over 400 jackets she and other artists have painted for people, putting their medical story on their jacket, gratis, because “everyone’s got a medical story but nobody can see them.” This ongoing project for “art in the environment” fixes that. (See her post this week that lists all the artists and jackets.)

Regina has done 348 jackets; 42 other artists have done 53 more, all free* if you’ll wear them to conferences – because believe me, they start conversations about healthcare. And that’s how movements grow.

Regina is a force of nature – Forbes called her Healthcare’s Rosa Parks and the BMJ published a photo of her mural “73 cents” on its table of contents page.

*Will you support the costs of this work? The painters’ labor is free but the paint and shipping aren’t. There’s a GoFundMe page to raise money for the next 400 jackets. Many of us have contributed – will you? It’s a movement, and it’s getting traction. Put your shoulder to it!


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