Next in our series, Mark Boguski, MD, PhD is both a personal and a corporate member, as co-founder with Dr. Alan Littleford of ResoundingHealth. If you’d like to submit your own reason, write to me. (This is not an “invitation only” series – that wouldn’t be like us! When a member submits, we put it in the queue.)

Why did I join the Society for Participatory Medicine? Because of its potential as a catalyst for epochal change in our healthcare ecosystem.  Read more…

I ran across a graphic today that warmed my heart:

Recognize that agenda? (Click to enlarge if you want more clarity.) Sure is a lot of what we’ve discussed.

Pie in the sky, tough hill to climb, nice idea but not feasible, right? Wrong. Thursday I’m at a quarterly meeting a group that’s already making this happen. They’ve got demonstration projects, measurable results, tests of different payment models, the whole nine yards. They’ve been working on it for five years, and I don’t understand why none of the better-health-minded people I talk to have ever heard of the group.

It’s the Read more…

Gary Wolf of Wired has posted a whizbang write-up that came out of a whirlwind one-hour 12-way Skype chat about personal health data. Sound frenetic? It was. (I participated. It was, well, 12-way.)

I can’t imagine how to model what happened, except to say that it was wired.

It grew out of a request from the people at the Community Health Data Initiative, which (as we reported here last month) is opening vast amounts of HHS data for innovators to get at. (And innovators are doing so, fast, as that post describes.) Here’s how Gary started his write-up: Read more…

Participate in a public survey here at the OpenNotes project website: what do you think will happen when notes are made visible to patients?

Five weeks ago we wrote about the start of the OpenNotes project, funded by Robert Wood Johnson Pioneer Portfolio. The year-long project is now rolling, and a new article today in the Annals of Internal Medicine captures the current landscape and explains the study’s goals and methods. Read more…

At last Tuesday’s announcement of the Meaningful Use rules, many people asked for the slides. After going through clearances, they arrived today. Click for 44 page PDF (649k). Correction 12:19pm ET 7/19: the PDF has been replaced with a PowerPoint, which we uploaded to Slideshare:

e-Patient Dave’s book, Laugh, Sing, and Eat like a Pig, is out! Mark Graban captures the health geek excitement:

The best writers make you feel like you’re spending time with a wise friend — add some tears and laughs and you have Dave’s book. I wasn’t there for his whole journey, so I’m learning new things by reading about the scary, early days of diagnosis and treatment of his Stage IV cancer. And I love the chapter-by-chapter summary of Tom Ferguson’s white paper.

Tom posted only once to this blog — his blog — before he died in 2006 and it was a tribute to The Voice of the Patient. When a group of us decided to complete the white paper and continue the blog in Tom’s honor, Dave was not yet part of the group. Now Dave is not only part of the blog, but helped start the Society for Participatory Medicine and is a central figure in patient empowerment.

Dave dedicates his book to Tom, writing: “I never met you, but you guide me every day.” I bet there are people out in the world who would say the same thing about Dave, thanks to his writing — on blogs, on Twitter, and now in this book. Dave is the embodiment of the voice of the patient. Listen and learn.

The Pew Internet & American Life Project will soon go into the field with our next health survey and we need your help.

One of our core findings (8 in 10 internet users, or about two-thirds of U.S. adults, look online for health information) is based on a series of questions that is tweaked in each survey.  We re-word or separate concepts, cut some topics, and add others. Are there topics missing from the list? Which ones deserve to be repeated this year? No promises, but I asked for similar feedback in 2008 and implemented a few of the suggestions (see the “2008 only” topics below).

a.         Information about a specific disease or medical problem (asked in 2002, 2004, 2006, 2008: results)

b.         Information about a certain medical treatment or procedure (02, 04, 06, 08: results)

c.         Information about experimental treatments or medicines (02, 04, 06, 08: results) Read more…

Josh Seidman, Director of Meaningful Use, sent this. It’s for a two year full time job in DC, possibly extendable. No relocation costs will be paid – you’re on yer own. :–)

From what I hear, talking to people working in HHS these days, “full time” is an understatement. Don’t apply for this unless you want to work like a maniac for a long time. But those same people say they love it: change is happening!
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Please send the message far and wide that ONC is looking for the very best consumer e-health person out there to work on the most exciting work imaginable.  Let me know if you have any suggestions or questions.

The Office of Policy & Planning’s consumer e-health job posting has just gone public.

It is open for 30 days, from 7/15 – 8/16.

Please spread the word.

External Hire Posting here.  Same listing for existing govt employees here.

Joe Kvedar asks an excellent question in his post, The Next Phase of Connected Health: Connected Personalized Health:

What are the best variables to consider when taking connected health programs from pilot to scale?

He imagines a matrix with three axes: severity of chronic illness, patient readiness, and technology readiness. That makes sense to me, as did BJ Fogg’s Behavior Model when Alexandra Carmichael described the three elements to me in words: Motivation, Ability, and Trigger.

But I felt like I could actually apply BJ’s model after seeing his simple diagram:

The element Joe is adding, which is key to health interventions, is the severity of illness (or seriousness of diagnosis). That echoes the findings of the Center for Studying Health System Change: 41% of U.S. adults are “activated patients” (the rest  tend to be passive and may lack the confidence to play an active role in their health). Cancer patients are among the most activated, whereas people living with depression are among the least.

It also resonates with the Chronic Quadrangle described in The Innovator’s Prescription (p. 161 if you are a total health geek and have the book handy). Read more…

Update: The NLM released new widgets on July 14, along with a redesigned MedlinePlus site. (Read @eagledawg’s take on these new tools, as well as her response to this post.)

Speaking to the senior staff of the National Library of Medicine last week was like going before the best kind of murder board. Picture it: 30 of the nation’s smartest health information mavens around a polished conference room table, asking me sharp questions, suggesting new lines of inquiry, and offering their own insights. In other words, heaven.

Our jumping-off point was the Pew Internet Project’s latest research on internet penetration, mobile use, and the social life of health information. Here are my notes from Thursday’s meeting and some research questions I’m considering: Read more…