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Communicating the experience of illness in the digital age

At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online.

We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include as many people as possible in the process. You can check out our Storify, which lists our ongoing series of blog posts (this one is the second — Pam kicked it off on her blog last week.)

I thought I’d share some historical context. Because really, none of what we plan to discuss is new. It’s ancient. People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we have the ability to expand our networks, inject more data and background resources into the conversation, and then archive them for later searching or other use.

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Susannah Fox is leaving Pew Research

I know many of our readers already saw this, but, from her personal blog:

Screen capture from her blog post

In one way, I’m sad to see that her work at Pew is over. In her 14 years there, time after time her work made clear what was actually happening as people use the internet in pursuing health. Time after time this popped a rumor balloon.

But though she’s leaving Pew, her work continues: her post says she’s writing a book (! … can’t wait to read that), and she has a new part time gig at the Robert Wood Johnson Foundation. I can’t imagine a better place – RWJF has been pivotal to our movement: they funded the e-Patient White Paper by our founder “Doc Tom” Ferguson, and they’re all about creating a culture of health.

Susannah’s 245 blog posts at are here, and her 14 years of work at Pew are here.

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Guest post by Zack Berger, MD, PhD: The pledge of the patient-centered physician

Zack Berger MD, PhDThis blog welcomes guest posts from SPM members on relevant topics. Zack Berger of Johns Hopkins (@ZackBergerMDPhD) is highly committed to participatory medicine, and as this post shows, his book Talking To Your Doctor gets right down into the how-to’s. (More on this at end of post.)

This is his pledge as a patient-centered clinician. – e-Patient Dave

The pledge of the patient-centered physician

Medicine is a relationship between two people. I have my expectations, needs, and wants, and the patient has theirs.

However, the patient’s needs, wants, and expectations are more important than my own. She is the center of her health.

I will always:

  • Ask the patient what she wants, hopes, fears, believes to be true about her health.
  • Ask the patient what she prefers.
  • Tell the patient what options are available.
  • If I am not able to do what the patient wants, explain why not.
  • Ask the patient what her priorities are – whether in the moment, or in general.

I will never:

  • Assume that the patient wants the same things I do.
  • Blame the patient for their illness.
  • Belittle the patient for powerlessness.
  • Treat a patient worse than I would treat a family member.
  • Check a box before I check with the patient.

How I arrived at the pledge:

Doctors are talking a lot these days about being “patient-centered,” but most of it, especially at the institutional level, is feel-good boilerplate without much bite. Eventually we need to get to realizable behaviors that every practitioner is expected to adhere to. At this stage, we need to advance from general principles to more detailed statements. This is what I am trying to do here.

Zackary Berger, MD, PhDZackary Berger, MD, PhD, is an internist and epidemiologist at the Johns Hopkins School of Medicine in Baltimore, with a joint appointment at the Johns Hopkins School of Public Health and Associate Faculty at the Johns Hopkins Berman Institute of Bioethics. He maintains an active practice as a primary care doctor and precepts in the residents’ adult medicine clinic. 

His research centers on the role of the primary care doctor in cancer care, particularly prostate cancer, and doctor-patient communication in general. He is particularly interested in how provider and patient can navigate through situations of medical uncertainty buttressed by an ongoing caring relationship. Berger’s book, Talking To Your Doctor, came out in 2013, and his next book, Making Sense of Medicine, is due out in 2016. 

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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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