by Susannah Fox | Jul 15, 2012
Anyone who has doubts about including patients’ input in research studies should talk with Kathleen Bogart, PhD. She focuses on the social ramifications of facial paralysis, both congenital (like Moebius Syndrome) and acquired (like the often partial facial paralysis...
by Susannah Fox | Jul 12, 2012
A new Pew Internet/California HealthCare Foundation report is out today: Family Caregivers Online. I thought I’d give some background on why we did the study and a few key take-aways. Caregivers are alpha geeks of health care 30% of U.S. adults are currently...
by Susannah Fox | Jul 10, 2012
Big news today in the health geek world: CureTogether has been acquired by 23andme. For those just tuning in, CureTogether enables people to track and share their personal wellness experiments so that others can benefit from what they learn. 23andme enables anyone who...
by Susannah Fox | Jun 26, 2012
One year ago, I read a JAMA commentary that was so good I had to stand up while I was reading it: Are Patients Knights, Knaves, or Pawns? I blogged about it here (touching off a heated discussion) and started an email correspondence with one of the authors, Sachin...
by e-Patient Dave | Jun 19, 2012
Susannah Fox’s post about this two years ago pretty much went over my head: I didn’t get how important it was. But at this month’s White House conference on patient-generated data, I met Nikolai Kirienko, who was the central specimen in her post. The...
by Ileana Balcu | Jun 19, 2012
Thanks to member Eve Harris that pointed our her review of Joe and Teresa Graedon’s 2011 book “Top Screwups Doctors Make and How to Avoid Them”. From Eve: My blogpost ” Better Care, Fewer Worries” links to the SPM monthly intro this...
by e-Patient Dave | May 28, 2012
Quick update before I go out and play: SPM member @AfternoonNapper just notified me that two more of us, Katherine Kelly Leon and Sharonne Hayes MD, are also on NPR today! Patients Find Each Other Online To Jump-Start Medical Research I awoke this holiday morning to a...
by Gilles Frydman | May 24, 2012
Update 1 June 3: if you’re not familiar with the Open Access issue, start with Peter Schmidt’s comment below, citing a 2008 journal article on the issue, by a former editor of the British Medical Journal. ___________Â Update 2 June 3 @9:50 AM PST: we are...
by e-Patient Dave | May 20, 2012
Guest post from SPM member Adrian Gropper, MD of HealthURL.com. Information is the foundation for patient engagement. Nothing about me without me. Although personal medical information starts out with your various institutions and doctors, it doesn’t just stay with...
by e-Patient Dave | May 19, 2012
KQED blogger and SPM member Eve Harris has written a great brief piece on Hugo’s desire to access the data from his implanted defibrillator, beginning: Hugo Campos was apologetic about postponing a scheduled interview with me two weeks ago. In a midday email he...
by e-Patient Dave | May 10, 2012
SPM member Hugo Campos has had much coverage here and in the media (NPR, SF Chronicle, San Jose Mercury-News) for his desire to see the raw data coming out of his implanted defibrillator. The vendor, Medtronic, feels that its responsibility is to give Hugo’s...
by e-Patient Dave | May 4, 2012
Cross-posted from the ICMCC blog, a post by its chairman, Lodewijk Bos, a Dutch cancer patient who is a great advocate for information, technology, and patient engagement. The ICMCC news feed is a terrific daily compilation of health IT news. A long-time advocate for...
by e-Patient Dave | Apr 30, 2012
In today’s Boston Globe, the cover story for the daily “G” magazine is “Record-Keeping 2.0,” by Chelsea Conaboy (@cconaboy). Subtitled “Medical care is shifting to electronic data files – but how safe is it?”, it’s...
by Kathleen O'Malley | Apr 24, 2012
For those who didn’t make it to TEDMED 2012, here’s a brief overview of sessions of interest to e-patients, from SPM member Gangadhar Sulkunte. This originally appeared on his blog. Also noteworthy was TEDMED’s acceptance of “The Role of the...
by e-Patient Dave | Apr 16, 2012
One of the best-known sad stories in the e-patient movement is that of SPM member Regina Holliday, her husband Fred, and their two children. Fred died three years ago of kidney cancer in a series of failures of American healthcare, leaving a story that Regina now...
by e-Patient Dave | Apr 15, 2012
SPM member Brian Ahier posted this petition notice – and call for comments to the government – on the SPM member listserv. Written by Dave Chase of Avado, it deserves public attention. ONC: Strengthen the Patient Engagement requirements of Stage 2...
by e-Patient Dave | Apr 13, 2012
We posted Wednesday about the Great Challenges program at TEDMED, created by TEDMED and the Robert Wood Johnson Foundation. We said, “We must vote.” You did. We’re in. To see all the challenges that were accepted, go to Challenges.TEDMED.com, and...
by e-Patient Dave | Apr 11, 2012
Correction 4/12: I’m glad to say that there are in fact several patient speakers at TEDMED. There was a massive communication disconnect in the months leading up to this TEDMED, leading to my impression that there were no patient speakers; I hope to find out how...
by Dan Hoch | Apr 5, 2012
In a recent commentary on the American Public Media program Marketplace Money, Francis Frei discussed the failure of self check-out at supermarkets. Her insightful commentary is clearly based on both personal experience as well as her professional knowledge of...
by e-Patient Dave | Mar 23, 2012
The Center for Democracy and Technology (CDT) is one of my favorite sources for accurate information on the rules about our rights to access our medical records. Their wizard Deven McGraw is widely recognized as one of the best authorities anywhere on HIPAA –...
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