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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

“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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Zack Berger from #MedX on uncertainty and decision aids

Graphic "Maybe we have no idea what we're doing"

Graphic from his original post. Source:

Regular readers may recall SPM member Zack Berger MD PhD’s July post here The pledge of the patient-centered physician. Zack is one of the many SPM members attending the Stanford Medicine X conference this weekend and sends this Saturday night report, cross-posted from his book’s blog.

We’ve often written here about shared decision making, which helps patients choose based on the best available evidence. Here, Zack touches on an alarming but real aspect: what if the evidence is not so good? What have we accomplished? Can we (all) tolerate uncertainty?

I’m at the Stanford Medicine X conference, which provides much food for thought. Here’s tonight’s musings, based on an assumption which is quite prevalent among patient-centered health care folk today (a group I consider myself a member of). The assumption? More data is better.

That’s a red herring. We all know that only the right data, data linked to better health, is actually useful.

How do we get good data into the hands of patients to – among other things – aid their decision making? Decision aids have been much publicized, and for good reason. They are the next step, taking us from the evidence we already know about to the shared decision making we are trying to achieve.

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Request: true stories of where patient engagement in the chart made a difference

Vermont IT Leaders logoI’m giving a talk in Vermont next week, to health IT workers, and in talking with the organizers we realized it would be great to give them a vision of WHY we’re doing this – some true stories of where patients benefitted from seeing the data in their chart.

(By the way, the event is open to the public, and is just $99, an amazing deal. Among the speakers will be Karen DeSalvo, head of ONC.)

Anyone??  It could be yours, or one you’ve seen in the press.  I asked on the SPM members-only listserv and here are the answers I received.

Southern California member:

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To Be, or Not to Be, a B Corp

b corp logoPreface (later) by e-Patient Dave -
Casey and I were discussing that one of the obstacles impeding changing in medicine is that by law, corporate officers have to serve their shareholders first, i.e. make money before they get into any do-gooder stuff. The subject of “B Corps” came up – a pretty new development in American law. She knows the subject and agreed to write about it. As we think about the future of healthcare we should know this option. Thanks, Casey!

What’s a B Corp, you ask? It’s a new classification for corporations, defined as “certified by the nonprofit B Lab to meet rigorous standards of social and environmental performance, accountability, and transparency.”

I learned about B Corps by being involved with a few nascent B Corps in Virginia, the state where I live. Virginia, and particularly Richmond, are something of a hot-bed of B Corps and Benefit Corporations. B Corps are certified via the social, environmental performance, accountability, and transparency standards mentioned above; Benefit Corporations operate under a general principle of social benefit, vs. the traditional corporate “shareholder value comes first” mantra.

The white paper that planted the Benefit Corporation flag says this about the new structure:

Historically, the U.S. legal system governing corporate entities and their activities has not been structured or tailored to address the situation of for-profit companies who seek to use the power of business to solve social problems.

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Jessie Gruman remembrances set for NY, DC

Jessie Gruman profile photoWe reported five weeks ago about the passing of Jessie Gruman, one of the greatest figures in our movement, founder of the Center for Advancing Health (CFAH), founding co-editor-in-chief of our Journal of Participatory Medicine, and much more. CFAH has since expanded on her memory with several additional pages:

Remembering Jessie Gruman (July 18, 2014)

Recent Tributes to Jessie Gruman, CFAH Founder and President (July 25, 2014)

Lessons From a Fallen Hero, Jessie Gruman (August 6, 2014)

See, too, the causes she supported, at bottom of this post.

Two October gatherings have been announced to remember Jessie, one in New York where she lived, the other in DC, home of CFAH, and they’ve been gracious enough to invite the public. See also the official Jessie Gruman page on the CFAH site.

Please note the different RSVP info for each event:

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New evidence: Engaged (activated) patients do better and cost *less.*

Health Affairs headlineUpdate: instant egg on the face! This article is actually 18 months old, part of the big Health Affairs issue “New Era of Patient Engagement,” which Ileana Balcu blogged about at the time. Well, this post has already been retweeted ten times in 90 minutes, so I guess I’m not the only one who didn’t notice! Anyway, here’s this morning’s post, corrected a bit.

I’ve long been a fan of the Patient Activation Measure, which I wrote about here three years ago in The Patient Activation  Measure (PAM): a framework for developing patient engagement. It’s a straightforward questionnaire that assesses how activated / awakened / engaged someone is regarding their health, and it has a full decade of robust studies demonstrating that a person’s PAM score predicts many different outcomes. It’s a heck of a tool. (No, I’m not involved with the company.)

Here, I want to report on an important paper in the Health Affairs policy journal on a new dimension (the cost of a person’s care), discuss the report’s probable policy impact, and propose that we take the concept an important step further.

Optional background: If you’re interested in understanding what makes a difference, I urge you to go read that post from three years ago, including its dozens of comments. They really get into what we know so far, and probe into what we think beyond that. Dr. Hibbard herself responded with great additional info.

First: what activation is (or more precisely, what the PAM measures)

From the post 3 years ago:

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American Heart Association journal announces new Patient Viewpoints

The American Heart Association journal Circulation: Cardiovascular Quality and Outcomes has announced a new Patient or Caregiver Viewpoint section in the journal. Viewpoints will be authored by patients or their caregivers and will discuss the patient’s experience of heart disease, stroke, or other cardiovascular disease and their interactions with the healthcare system.

As Harlan Krumholz and I explain in an Editor’s Note, the editors of the journal hope that Viewpoints “will contain insights from the patient’s perspective along with suggestions on how to improve clinical care and healthcare delivery.”

The first Viewpoint, by a heart disease patient, discusses how he experienced interactions with his physicians over whether he should start a blood pressure medication and his thoughts on how physicians and patients could work together in a manner consistent with the patient’s values and goals.

Viewpoints will contain a minimum of medical jargon and will be freely accessible to the public. The journal hopes to make these articles a regular feature. If you are a patient living with or at risk of cardiovascular disease, or a friend or family member of such a patient, please consider submitting a Viewpoint. Instructions to authors are posted on the journal’s website.

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OpenNotes in the news: Now 3 million patients – and mental health, too

OpenNotes July 2014 3 million patients We’ve often written here about the OpenNotes study (here’s a site search), which documented that when patients can see what their clinicians wrote, the sky doesn’t fall; instead, all kinds of good things happen. This is game-changing, even world-changing for how we conduct medicine: As I’ve often said, “People perform better when they’re informed better,” and SPM co-chair Dr. Danny Sands says “How can patients participate if they can’t see what I see??”

Adoption of OpenNotes policies is going nuts: their “who’s doing it” page now says three million patients have access! You can subscribe to their publicity list on the OpenNotes site. Here’s today’s.

Of special interest:

  • Some people are starting to do OpenNotes with psychiatrists. Many people thought that would never happen, but see the New York Times piece below (and three other news items about it!)
  • SPM member Peter Elias MD wrote a piece on The Health Care Blog, “An Open Note to OpenNotes Objectors.” It’s so good that it was picked up for publicity in this newsletter. (See below.)

To read this edition online click here; to see past editions click here. (The box to subscribe is at the bottom of the site’s pages.)

This edition:

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