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NPSF’s magnificent Universal Patient Compact

Updated 3/12/2014 with new links at bottom. One of my personal pleasures in the first year of the Society for Participatory Medicine has been discovering people in other parts of the “patient culture” who’ve been doing wonderful, empowering,...

Second wave of comments on Health IT safety issues

Last month I posted the testimony I submitted to the Adoption/Certification Workgroup of the Health IT Policy Committee. (I urge interested parties to review the links to other resources in that post.) Today Paul Egerman, chair of that team, circulated a preliminary...

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,...

Health data rights on CNN

Elizabeth Cohen, CNN Senior Medical Correspondent, captured the zeitgeist of the health data rights movement in today’s must-read article, Patients demand: ‘Give us our damned data’. An e-patients all-star team is quoted in the story: Jen McCabe,...

My Father’s Medical Record Fiasco

Guest post by Alan Viars (@Aviars), CEO of Videntity Systems, Inc. This past year my father required open heart surgery. This is a short article about the hurdles we (his family) encountered along the way. I’ve changed the names, because it is not my intention to...

Woman Loses Health Insurance Due to Facebook

Imagine a world you live in where every insurance offering is accompanied by a creepy set of Big Brother-like ongoing investigations into your life. Everything will be used as evidence against you. Yes, even your Facebook profile. That world is here. Well, not right...

Tell the FDA the whole story, please

I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…) So when I saw Jonathan Richman’s tweet the other...

Social media and healthcare: hospitals lead

A signal moment has happened: When a major business authority with no history in healthcare speaks up about a shift in the wind, it’s worth noting. And this time it’s a great sign for participatory medicine, because the news is that hospitals are engaging...

“HIPAA is SO 1996”

That’s a direct quote from Paul Tang, of the Palo Alto Medical Foundation, at last week’s meeting of the Health IT Policy committee, of which he is vice chair. Dr. Tang was riffing on an e-Patient Dave quote, which I read during my testimony: I want...

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