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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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An important moment in our movement (JoPM article): The evolving language of patient engagement

Figure 4 - Thematic Map

Figure 4: Thematic Map of how concepts expressed are shifting through the years. Click to enlarge; see article for (fairly technical) discussion.

Barello-et-al-Figure-5 new model

Figure 5: Potential guidelines for planning and developing interventions to foster patient engagement. (Patient-provider relationship; system and healthcare organizations; patient as community member and peer-to-peer healthcare) Click to enlarge.

An article of importance to our movement appeared in June, in our Journal of Participatory Medicine. It’s an analysis of twelve years of literature about patient engagement, documenting what words people used, what context they appeared in, and (perhaps most importantly) how the language has shifted – a sign of cultural evolution. Finally, the article proposes a framework for measuring how engagement is progressing on three levels.

The article is The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review, by Barella et al, at Università Cattolica del Sacro Cuore (Catholic University of the Sacred Heart), Milan. Its reading level and psychological vocabulary are beyond me personally, but I can understand enough to want more exploration (and more customer-friendly explanations!)

As far as I know, this is the first comprehensive study that looks at what people have been saying, and what they mean, when they’re talking about patient engagement. That’s important when you’re trying to shift culture, as our Society is, because culture lives in language. If you want change but you don’t know what people are saying, and what they mean, you can’t possibly speak effectively and suggest that people think (and speak) differently.

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Researcher seeks patient input: what should a stent decision aid include?

Preface by e-Patient Dave: We have often written here (see posts) about Shared Decision Making, in which patients are engaged in choosing among treatment options. A key method is to give patients a “decision aid” (DA) – a document or video that explains the options, with pro’s and cons.

A vital question in the design of a DA is, which factors should patients be informed about? And who decides that? In this case a researcher is asking for patient opinions (!) on what should be included in a DA for stents. (See the National Institutes of Health introduction to stents.) SPM member Marilyn Mann (@MarilynMann) knows a lot about stents – this is her first post here.

Adnan Chhatriwalla, MD, is a cardiologist at Saint Luke’s Mid America Heart Institute in Kansas City, and is co-investigator for DECIDE-PCI, a study designed to develop and test a decision aid (DA) for patients who have decided to have one or more stents inserted in their coronary arteries. (Note: this is not about whether to have a stent at all — that would be a separate decision.)

The DA would help these patients choose between the two types of stents — bare metal stents and drug-eluting stents.

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Let’s crowdsource what a “good” medical record tool for patients is (and list some products)

Ah, social media. On Facebook a couple of hours ago, Swedish SPM member Sara Riggare posted:

Capture of Sara's initial Facebook post

Responses were quick and robust:

  • “Web MD has an app that you can download that I use. I find it pretty useful.” - Mark Burek
  • “That’s a sticky question. I tried Caresync ([SPM member Amy McFall Gleason’s app) and thought it useful. I think I’ll check out the app Mark recommended.” – SPM member Casey Quinlan
  • Have you tried Family Medical Manager?” – Pernilla Jackson
  • “Although I’m not a user with active conditions to manage, I’m strongly drawn to Hello Doctor. I was an advisor for a short time but withdrew because I wanted to be able to talk about it, unencumbered. A big limiting factor is that it’s iPad-iPhone only.” – me
  • “We should include the blog post by Society for Participatory Medicine president-elect Nick Dawson, “Evernote is my EMR.” – me

In minutes the idea arose of starting a discussion here on the blog – a much better place than Facebook for a discussion you want to return to. Then this:

Amy, I’m thinking this could become a totally unguided exploratory spreadsheet (Google Doc), with features down the left side and products across the top. It may soon become too big to be usable so something fancier is needed, but we could start.

So here we are:

This is a spontaneous project to collect thoughts on two things:

  • What good tools do we know of, to keep track of our own health information?
  • And by the way, what do we mean by “good”?? What features do we (the patients, the users, the ultimate stakeholder) say we want?

We’ll start with comments on this post. Game on!

By the way, we’ll welcome non-hype contributions from makers of such products. Give a short description of the product and link to its site. Our goal is to inform e-patients and families about their options – and about what factors to consider.


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