e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Rest in Peace: Personal Health Records (PHRs)
While doing some research the other day on personal health records (PHRs), I came across this article, describing Revolution Health's announcement -- without much media attention -- about dropping its PHR at the beginning of 2010. (Disclosure: I worked for Revolution...
PatientsLikeMe goes wide
PatientsLikeMe opened up to every condition today. From their press release: Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old free online health data-sharing...
SPM on the Air: People’s Pharmacy (NPR)
Joe and Terry Graedon, long-time friends of "Doc Tom" Ferguson, produce The People's Pharmacy, a website and radio program on NPR. Last Saturday's program was about the Society for Participatory Medicine, which they helped to found in 2009. (They were also among Doc...
An ode to health data rights
Fun for Friday: David Hale singing an ode inspired by Regina Holliday and e-Patient Dave:
BMJ posts expert roundtable audio on Salzburg Statement and Shared Decision Making
The BMJ (British Medical Journal) has posted a three-part downloadable podcast about the Salzburg Statement. Part 1: History and current status of shared decision making. [26:04] Part 2: Vision of the future, and barriers to getting there. [23:31] Part 3: Informed...
Peer-to-peer healthcare on NPR
To me, there are two types of breaking news in health care: the macro and the micro. Macro health news breaks when there is a natural disaster, a scientific breakthrough, or a new twist in a policy debate (see: "ACOs"). I read up on the facts and try to make sense of...
Accountable Care Organizations and Patient-Centeredness
As you may know, the proposed Accountable Care Organization regulations were released yesterday. I’ve posted links to the various documents and some early news reports on my blog: Accountable care organization proposed regulations released for public comment. I’ll...
TEDMED End Of Life videos are up
Last October we posted about two great TEDMED talks related to death. The videos are now up. The empowered, engaged patient cannot ignore this issue. Patients who've faced death will know why these talks on death are about being alive. It's not a paradox; sit down for...
In the End
Three years ago our family was faced with a difficult decision. What is the best care for our mother? We toured all the possible local options, but when it came down to it, there was only one facility* willing to take my mother due to the advanced state of her Alzheimer’s disease. It would not have been my first choice. In fact, it would not have been my second or third choice. I found it to be a completely dreary and depressing place. Picture a Nursing Home from the 50s, not a modern day Elder Care Center.
What if information spread more quickly than a virus?
On March 11, the White House hosted an event to mark National Women and Girls HIV/AIDS Awareness Day. The event was livestreamed from whitehouse.gov and is archived on YouTube: I have written before about the unique nature of conferences concerning...
How can a community organization tap into the health dev craze?
Updated on 3/24/2011: I recently met the director of a community health organization A. Toni Young, founder and executive director of the Community Education Group here in Washington, DC. She has big dreams for harnessing the power of her clients' health data but few...
The Salzburg Statement on Shared Decision Making
This Thursday at the headquarters of the British Medical Journal in London, an important announcement will be made about patients' rights to be actively involved in decisions about their treatment. Below is the press release about it. The subject is shared decision...
