e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Dx: Revolting. Rx: Revolt.
Tuesday night, endorsement #906 on HealthDataRights.org came from a Judy Beckman, who says: “I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????” Indeed, why? Whose data is it, anyway? This spring...
US Health Care Reform: A Contemporary Example of
Goodhart’s Law?
Goodhart's law - named after a former chief economist of the Bank of England - says that whatever social or economic indicator or other surrogate measure you adopt as a financial target ceases to be a relevant target once you have adopted it because it loses the...
Question For President Obama
Guest Post: Cindy Throop from http://Open-Health.us, a participatory forum dedicated to effectively including patients in the discussion, planning, and evaluation of health care reform. A lot of money is about to be invested in health care, particularly into health...
My Right to Data, Happiness, and a Long and Healthy Life
“To alienate [patients] from their own decision making is to change them into objects.” – P. Freire, Pedagogy of the Oppressed The newly drafted Declaration of Health Data Rights, created by patient advocates, caregivers, health care professionals, technology and...
e-Patients Discover Unrecognized Side Effects
Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don't detect all the adverse drug effects that may be important. Far too often, serious side effects brought...
“No political power center for regular people”
in health reform
Aliya Sternstein writes for NextGov, a site devoted to "technology and the business of government." We spoke last week for her piece about the White House's use of social media. There are some people who, when you speak with them, the conversation goes to new places....
In Iran and in the US Health Care System,
Citizens’ Access to Computable Data
Frees Everything!
Dedication: This post is dedicated to Regina Holliday and to the memory of her husband, Frederick Allen Holliday, who passed away on June 17. Regina's story has energized many of us to create the Declaration of Health Data Rights we are asking you to endorse on a...
“Economic Euthanasia On the Rise”
(Veterinary Practice News)
This is not going to be easy to absorb, if you really let it sink in. My wife's a veterinarian, and we sometimes compare notes. So this headline caught my attention. Excerpt from the article: Economic Euthanasia On the Rise Euthanasia can be the last act of love when...
Imagine someone had been managing your data: next anecdote
Next anecdote about poorly managed medical data: Amen! Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was...
Participatory Medicine: Blending Traditional Medicine with “Health 2.0”
Tom Davenport, in a Harvard Business Publishing Blog post, does a nice job of discussing the merging of "Health 2.0", the aggregate of online communities, wiki's, bloggers, and tweets, with the role of traditional medical providers. He asks whether, if you get...
e-Patients Are Proud Deviants!
The wonderful Atul Gawande delivered this past Friday a commencement address, titled “Money,” to the graduates of the University of Chicago Pritzker School of Medicine. He touched on and expanded on the theme of his groundbreaking article "The Cost Conundrum" that was...
Social Healthcare: “Medicine in the Age of Twitter”
Physician Pauline Chen writes about "Medicine in the Age of Twitter" for the New York Times. The article suggests the need for our upcoming peer-reviewed Journal of Participatory Medicine:...a quick scan through peer-reviewed journals reveals only a handful of...
