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Jessie Christine Gruman, 1953-2014

Jessie GrumanI’m saddened (really saddened, as I write this) to report that one of the titans of our movement, Jessie Gruman, died unexpectedly yesterday at home in New York. She had long been sick, but the demise was sudden.

In addition to the mountain of work she produced as founder of the Center for Advancing Health (CFAH), Jessie was one of the early forces in SPM: she was the founding co-editor-in-chief of our Journal of Participatory Medicine (JoPM). As many of you know, she was in her fourth cancer, all initiated by the megadoses of radiation she got as a teen for her lymphoma, before medicine knew it would later cause cancer after cancer in adulthood.

(Other well-known lymphoma e-patients in our community include Alicia Staley and Kym Martin, wife of “Gimme My DaM Data” songwriter Ross Martin).

SPM President Josh Seidman was one of the Ziff Patient Engagement Fellows sponsored by CFAH, so he was among the first to be notified.  In an email last night he wrote to some of us,

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Keeping Patients in the Dark: SIIPC14



Several SPM members were in attendance at the recent SIIPC14 conference at Dartmouth, where the ongoing work on healthcare system transformation  has been the source of much great content on over the years.

Casey Quinlan – yes, yours truly – has put up a post on the Mighty Mouth blog that gives one woman’s perspective on the conversation in the room and on Twitter during the conference, and in some precincts since.

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The Doctor as Patient

Charlotte Yeh is the Chief Medical Officer of AARP Services, and has had a long career in government and as a practicing emergency physician. (Our paths first crossed years ago when we were both working on pre-hospital care reform in Massachusetts.) She wrote a piece published in the current issue of Health Affairs about her experience as a patient after being hit by a car while crossing the street in Washington, DC. Read it. After detailing her frustration with the clinicians in the acute setting more focused on protocols and diagnostic testing than on the patient before them, and her satisfaction with the clinicians in the rehabilitation setting who asked her to define her own goals, she concludes:

If I resolved anything on my care journey, it is that the “North Star” guiding all care must be providers using “any means possible,” to know the patient, hear the patient, and respond to what matters to the patient. It should make no difference where you practice; any provider can do this. Emergency departments can’t hide behind the excuses of “we’re too busy” or “it’s too chaotic” to avoid connecting with every patient.

It is time to frame a new paradigm of care, a consumer-driven approach that concentrates attention on the art of medicine. This might begin with a reinvigorated focus on patient-centered care and mastering the skills of listening, empathy, and patient partnership.

Strong words from a clinical leader, published in in a journal that is a key forum for health policy discussion. Here’s hoping that she is able to engage others in this conversation in a meaningful way.

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Of half gods and mortals: Aesculapian authority

Written in collaboration with Linda Trietler, MSN, RN – PhD student. 

Review of Kalisch, B. J. (1975). Of half-gods and mortals: Aesculapian authority. Nursing Outlook, 23(1), 22-28.

As we work to develop a collaborative and patient centered health care system we must remain aware of where we started and why the system needed to change. In 1975, thirty-nine years ago, Kalisch wrote that the traditional patient-physician relationship is based on the phenomenon of “Aesculapian Authority.” Aesculapius is the ancient Roman “god of medicine” and as such, was revered and wielded great control over people’s lives. It is interesting to note that the author, a nurse, states that the inspiration for the paper was her own experience as a patient and being hospitalized.

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A Farewell to Richard Rockefeller, e-Health Visionary

The founders of SPM were saddened this weekend to learn of the death, in a private plane crash, of Richard Rockefeller, longtime friend of “Doc Tom” Ferguson. Rockefeller was credited in Ferguson’s white paper as “a White Paper Advisor.” – e-Patient Dave

Photo: WireImage (via WSJ)


Photo: WireImage (via WSJ)



When the single-engine plane Richard Rockefeller was piloting crashed in rain and fog just after takeoff from New York’s Westchester County Airport, the headline was the death of the 65-year-old son of billionaire banker David Rockefeller. But if you read carefully through the small-print, paid obituaries in this past Sunday’s New York Times, you would have come across this description:

Richard was a pioneer in recognizing that the Internet could help doctors and patients share crucial data, with the ultimate goal of improving medical diagnoses and health care delivery – ideas that are routine today but were prescient when he created the Health Commons Institute in 1994.

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Wall Street Journal on patient access: “Health-Care Providers Want Patients to Read Medical Records, Spot Errors”

Wall Street Journal screen captureRegular readers know that this blog has long advocated for patient access to, and engagement with, the medical record. In the past 2-3 years we’ve especially advocated for OpenNotes, in which patients can see their primary’s actual visit notes.  At my hospital, Beth Israel Deaconess, not only can patients see their primary’s notes, in 2014 it’s extending to all specialties, and in 2015 they plan to make it available even while you’re in the hospital.  For those of us who’ve found mistakes in our chart – which is most of us – this is a fabulous aid to patient safety.

Well, today’s Wall Street Journal has a fabulous update: as more and more people are trying this, evidence is accumulating that patient access helps improve quality. Examples:

  • As many as 95% of medication lists contain errors.(!)  (Does yours??)
  • Big-name providers are doing it: Cleveland Clinic, Mayo Clinic, the VA health system, Geisinger, Kaiser
  • In Geisinger’s year-plus experiment, 80% of patients spotted errors in the medication lists, with an average of 20% of medications being out of date etc.
    • (And pharmacists accepted 80% of the proposed changes. In other words, the patients were not irresponsible cuckoo people… as some providers think.)

The combination of the Wall Street Journal name and the big-name clinics should be a potent argument. Patients, don’t be shy about asking your own providers to let you help with data quality. And providers – please – don’t you want some help?

Remember: this is not just about patient rights.

No clinician can perform to the top of their training if the info they’re given is wrong.

In participatory medicine, patients contribute real value to the clinical encounter. This WSJ piece is the latest evidence on how.



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HIMSS blog: Thought Leadership – The Patient Perspective

Interesting blog at HIMSS by Pete Rivera: use the patient to redesign the workflow: Thought Leadership – the Patient Perspective

For years, I advocated that health IT does not drive business.  I still do. Rethinking your processes to leverage technology is just smart business. You may be thinking, “Great, let’s get a committee together of doctors, nurses and technology people and figure this out.” That would be a start, but it would miss the crucial element: the patient.
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Getting your health data: BlueButton/ShareCare tweetchat Thursday

A press release published Tuesday begins:

Sharecare and Blue Button Host Twitter Chat to Help Consumers Take Control of Their Personal Health Information

Gaining control of your health and your personal health information is more than just a convenience – it’s your legal right. But most people don’t know where to start. In an effort to educate the American public about how they can access their health records easily and securely, Sharecare, the online health and wellness engagement platform created by Dr. Oz and WebMD founder Jeff Arnold, is hosting a Twitter chat on Thursday, June 5 at 12pm ET. …

Sharecare tweetchat site screen captureIn February I posted video of a talk I gave last summer in New York at the Blue Button Developer Conference, passionately appealing to developers to join in to achieve what US Chief Technology Officer Todd Park has for years been calling “Data liberación” – setting data free so that we, the citizens, can benefit from it. When Todd first said it he was talking about data in government “data warehouses”; Blue Button is different: it’s about our data – mine, yours, your family’s – as individuals.

Now, to promote citizen awareness of this new and evolving method of getting our data, Sharecare is hosting this Twitter chat on Thursday. See the event’s web page for more information. Astute readers will notice that I’m among the listed experts.

e-patients Alicia Staley @Stales and @TiffanyAndLupus Tiffany Peterson will be among the “invited experts,” and I’ll be live in the third hour, when the topic will be “what’s the future of health and healthcare supported by Blue Button?” Boy do I have thoughts on that. (As a result, I now have an expert page on

And of course as with everything on Twitter, the archive will be available afterward.

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SF Bay Area chapter of SPM starting. Join!

Richard Anderson at Medicine-XSPM member Richard Anderson @RiAnder has a lot of experience helping to found and develop another organization’s local chapters around the world. Because of a nightmare experience with the U.S. healthcare system, he has decided to work to change that system, and as part of that work, to start a local chapter of SPM in the San Francisco Bay Area. This will be SPM’s first such chapter. He invites you to join and to help out, including perhaps sponsoring:

I’m delighted to announce that I’m in the process of starting the first local chapter of the Society for Participatory Medicine. This is all happening in the San Francisco Bay Area.

If you reside in the SF Bay Area, I invite you to join the group: If you know of others in the San Francisco Bay Area who you think might be interested in joining, please let them know about the group as well.

Topics/issues to be addressed at chapter meetings will include

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Patients Invited! Health Informatics Conference seeks Patient Participation

An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada.

Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we unleashed imagination” provides the motivation for this year’s conference.

The main conference themes are:

  1. Patients Talking
  2. The Profession Listening
  3. Services Unleashing the Imagination

Patients are encouraged to submit papers that provide their own stories and insights. Concern is not the formal style, but descriptions of how patients can communicate with clinicians. Most importantly, we are interested in your ideas.

Conference Website:

Instructions for Patient Perspective Papers

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