Society for Participatory Medicine
e-patients.net blog
Why PM
What do YOU want from the Society for Participatory Medicine?
We (the people on our banner graphic) are at the annual e-patients.net retreat – which, this year, is the board meeting of the Society for Participatory Medicine. Whether or not you’re a member yet (join here), we want to know: what do YOU want the Society to do? Our first year was semi-focused – we [...]
Read Moremedical records, policy issues, trends & principles, Why PM
Testimony submitted to the Adoption/Certification Workgroup for its Feb 25 meeting
As I’ve noted recently, this Thursday I’m on a stakeholder panel at a meeting of the Adoption/Certification Workgroup, which is part of the Federal Health IT Policy Committee. As noted in my previous post, this is a busy day, and each of us gets only 5-7 minutes to speak, followed by Q&A. We submit our [...]
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“Alone we are rare. Together we are strong.”
Rare Disease Day 2/28/10
One profound shift in healthcare enabled by the internet is the Web’s ability to be a common platform for huge numbers of low-volume diseases. This is the “long tail” effect that makes Amazon and eBay a success, selling vast numbers of items you never would have seen before the Web. The difference, of course, it [...]
Read Moremedical records, policy issues, positive patterns, reforming hc, trends & principles
Panelist questions for ONC’s 2/25 hearing on EHR patient safety issues
I wrote last Wednesday about some background material for a panel I’ll be attending Thursday, as part of the government’s process to encourage adoption of electronic medical records. In the current administration all such discussions are wide open to the public. Here are the questions we’ll be asked – I’d welcome your input.
Read Moree-pts resources, medical records, policy issues
Proposal for a health data system to support urgent cancer patients and wounded warriors
Denny Porter is executive-in-residence at the HIMSS Foundation, Institute for e-Health Policy. I met him in Washington last month at the eHealth Initiative’s annual conference, where I was on a panel. Great guy, and I love this proposal: a Federal Health Records Gateway to rapidly assemble all the health data about an urgently ill person [...]
Read Moree-patient stories, others' e-patient stories, policy issues, reforming hc
Some people just won’t take death for an answer.
We often talk here about empowered patients’ struggles to get – or even create – the care they need. Usually we’re talking about it in a medical sense. But as far too many people know, sometimes there are other obstacles. Laurie Todd is, to me, an outstanding example of someone who wouldn’t take death for [...]
Read Morehc's problem list, medical records, policy issues
What to do about “the cream of the crap”? ONC’s Adoption/Certification Workgroup meeting
I’d like your help preparing thoughts and testimony for a policy meeting I’ve been invited to attend in Washington next week. For these meetings, one needs to submit prepared remarks in advance, for the committee to digest in advance. And from what I’ve learned so far about this, there’s a lot to chew on, and [...]
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E-patients.net = suggested reading
Gretchen Berland is one of my heroes, so I was thrilled when she asked me to give a guest lecture at Yale. Then I read the syllabus for “Media & Medicine in Modern America.” It’s too cool to keep to myself…
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The Decision Tree: What to Expect When You’re Expecting a Long Life
Warning: Do not read The Decision Tree unless you’re ready to make some kind of change in your life. Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking [...]
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Data-Driven, Patient-Centered Health Care: A #WhyPM Video
From our friends at the Robert Wood Johnson Foundation Pioneer Portfolio, the best #WhyPM short video I have seen. My kudos to them.
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