e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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...
The Social Life of Health Information
The Pew Internet/California HealthCare Foundation report, The Social Life of Health Information, is packed with new findings from a survey of 2,253 adults, including 502 cell-phone interviews, conducted in either English or Spanish. We spent a bundle of money on...
“Moms, do not give up.”
This item from ABC News nearly brought tears to my eyes. The first signs that something was wrong with 11-year-old Connor Teare came when he was a toddler. His muscles were growing increasingly rigid and becoming more difficult to move. He went from leg braces to a...
Dossia, Microsoft HealthVault & Google Health:
Illegal in NJ?
In the last few days the announcement of a proposed NJ state law has made the Internet rounds. “· On or after January 1, 2011, no person or entity is permitted to sell, offer for sale, give, furnish, or otherwise distribute to any person or entity in this State a...
