We 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:
Update: 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:
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.
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.)
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.
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.)
Ah, social media. On Facebook a couple of hours ago, Swedish SPM member Sara Riggare posted:
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.
We don’t tell you often enough here of new pieces in JoPM, our Journal of Participatory Medicine. Of course you can subscribe to the journal on their site, but I hope to specifically point things out here. (See also our past posts in the JoPM category.) Here are two recent ones:
- A Tribute to Jessie Gruman, Founding JoPM Co-Editor by Charlie Smith – a brief tribute from our other founding editor, who worked closely with her and knew her well. (Our own post about her passing is here.)
- Book Review: A Cure for Asthma? What Your Doctor Isn’t Telling You — And Why (June 26), by Shahank Kraleti MD and Diane Jarrett EdD (U of Arkansas for Medical Sciences, Little Rock), on the decades of work by David Hahn, MD to get medicine to listen to the results he’s had in curing asthma in many patients, through antibiotics. It’s not a miracle cure of course; he asks medicine to listen, test his ideas, do more research. My view: e-patient families should certainly know about this option.
Two other posts are forthcoming this week about specific, important items in JoPM. Again, you can subscribe on the right side of the JoPM site, so you’ll get notified promptly of all new releases, even if we’re late in our reporting here.
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.
I know many of our readers already saw this, but, from her personal blog:
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.