by Susannah Fox | Nov 16, 2009
NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what...
by Gilles Frydman | Nov 12, 2009
The FDA is holding a public hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.” There is a tremendous amount of buzz on Twitter and blogs about this meeting which will hear 60 speakers, some more than...
by e-Patient Dave | Nov 10, 2009
An interview Regina Holliday appeared yesterday on NPR’s All Things Considered. More on this later, but I want to get it posted.
by e-Patient Dave | Oct 9, 2009
We have wonderful news: next week Grand Rounds is devoted to Participatory Medicine. We are asking for your personal stories of how patient engagement has worked for you. It’s being hosted by Robin, the incredible patient who runs the Survive The Journey blog....
by e-Patient Dave | Sep 26, 2009
A Google alert popped up today, saying that a participatory physician in India had cited this blog. Don’t we love it when social media let empowering information spread! It’s exactly what our founder “Doc Tom” predicted with his now-famous 1995...
by John M. Grohol, Psy.D. | Sep 18, 2009
I hear it time and time again in the e-health industry: “If only we had everyone on an electronic medical record, all of our security and privacy issues would be solved!” Really? Perhaps I should introduce you to a little something psychologists like to...
by Charlie Smith | Sep 17, 2009
Matthew Herper’s post about thalidomide treatment of Myeloma is a good example of how patients will contribute to medical knowledge in the future, and may form a cautionary tale for patients who get involved to this degree in formulating new treatment...
by e-Patient Dave | Aug 14, 2009
Important update: it turns out the writer did get it right, and this was an editing error at the Boston Globe. See my comment August 17. —– As empowered, engaged patients we have a responsibility to evaluate the articles we read. A case in point is this...
by e-Patient Dave | Aug 10, 2009
Good piece on NPR this morning about what a KQED correspondent found when she went to Canada and talked to citizens and doctors about their experience of wait times. Click to go to their site and listen. One might ask, what does this have to do with patient...
by e-Patient Dave | Jul 28, 2009
After hearing about 800 million mentions of “healthcare reform” in the past couple of months, this weekend I visited my normal (not-HC-geek) family in Maryland for Mom’s 80th birthday. (Woohoo! Large clan descends, six siblings and most of the...
by e-Patient Dave | Jul 23, 2009
Guest post by Kent Bottles, M.D., President of ICSI. Preface: The Institute for Clinical Systems Improvement is a Minnesota-based non-profit that “brings together diverse groups to transform the health care system so that it delivers patient-centered and...
by e-Patient Dave | Jul 1, 2009
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...
by Gilles Frydman | Jun 29, 2009
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...
by Gilles Frydman | Jun 28, 2009
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...
by Sarah Greene | Jun 26, 2009
“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...
by Joe Graedon | Jun 25, 2009
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...
by Gilles Frydman | Jun 22, 2009
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...
by e-Patient Dave | Jun 19, 2009
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...
by e-Patient Dave | Jun 19, 2009
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...
by Gilles Frydman | Jun 15, 2009
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...
Learning Health Systems Empower Every American to Actually Make America Healthy Again Together, Part 2May 29, 2025
More important than Time and MoneyFebruary 5, 2025
We Can Change the US Healthcare System: Your Health, Your VoiceJanuary 15, 2025
The Killing of Brian Thompson was AwfulDecember 30, 2024
Recent Comments