by e-Patient Dave | Jan 18, 2016
Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s...
by e-Patient Dave | Dec 13, 2015
As SPM advances the cause of patients as responsible drivers of their care, we sometimes hear denials or complaints from physicians who feel that e-patients needy, uninformed, self-centered burdens on busy clinicians’ time. Well, here’s a juicy...
by e-Patient Dave | Nov 27, 2015
This is a call for patient participation. We’re especially inviting members of our Society, but it’s open to anyone; feel free to circulate widely, especially to people with the conditions listed below! First, a bit of background, then the request. Regular...
by Ileana Balcu | Aug 20, 2015
The site Crohnology, well known patient community for patients with IBD (Inflammatory Bowel Disease), recently started focusing their blog on explaining IBD- focused research to patients. Their most recent blog post describes a study that studied what patients with...
by John M. Grohol, Psy.D. | Apr 15, 2015
According to a new study in JAMA, data breaches into people’s protected health information (PHI) records are increasing: “[The] study that found almost 30 million health records nationwide were involved in criminal theft, malicious hacking or other data...
by e-Patient Dave | Feb 17, 2015
Dr. Donald Lindberg, long-time director of the National Library of Medicine, is surely the single most-quoted authority from “Doc Tom” Ferguson’s e-Patient White Paper. In almost every speech I’ve given in the past five years I’ve used...
by Nick Dawson | Jan 31, 2015
Last Friday, 200 patients, advocates, scientists, doctors and researchers gathered at the White House to hear President Obama’s launch of the Precision Medicine Initiative. According to the President, precision medicine...
by e-Patient Dave | Oct 14, 2014
I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the “European ASCO” cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with...
by Marilyn Mann | Jul 28, 2014
Preface by e-Patient Dave: We have often written here (see posts) about Shared Decision Making, in which patients are engaged in choosing among treatment options. A key method is to give patients a “decision aid” (DA) – a document or video that...
by Ileana Balcu | Jun 13, 2014
An interesting editorial in the BMJ (British Medical Journal) describes BMJ’s path to including patients in reviewing the articles and research published in the Journal. I hope this initiative will be successful and copied by the healthcare world....
by Marge Benham-Hutchins | May 21, 2014
An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada. Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we...
by e-Patient Dave | Mar 21, 2014
This isn’t directly related to participatory medicine per se, but for students of the social web and “health is social” factors, this will be fascinating and important. (In my speaking work, it’s always useful to cite new research that sheds...
by e-Patient Dave | Feb 25, 2014
Long-time readers will recall a hallway conversation I had at a conference in 2011 with Silke von Esenwein PhD of Emory University’s Center for Behavioral Health Policy Studies, who was presenting a poster with preliminary results of a study in process. The post...
by Ileana Balcu | Dec 3, 2013
Radiation oncologist Matthew Katz is a lifetime member of SPM who blogs regularly for the American Society of Clinical Oncology and Mayo Clinic Social Media Health Network. In this guest post he offers his view of 23andMe, the personal genomics service that’s in...
by e-Patient Dave | Aug 6, 2013
One of the most-quoted eye-opening quotes in “Doc Tom” Ferguson’s e-Patient White Paper is this: As Donald Lindberg, director of the National Library of Medicine, explains, “If I read and memorized two medical journal articles every night, by the end...
by e-Patient Dave | Jul 24, 2013
I’m thrilled to say that Dr. Ivan Oransky is now VP and editorial director of MedPage Today. From the announcement in Crain’s New York: “Dr. Oransky, previously on the editorial staff at Scientific American and The Scientist and most recently...
by Danny van Leeuwen | Jul 22, 2013
You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity,...
by e-Patient Dave | Jul 15, 2013
Just a quick note on something I’m happy to say we’ve been hollering here for years: A lot of what passes for “evidence” from peer reviewed medical journals is scientifically weak, and has never been verified by an independent lab. That means...
by e-Patient Dave | Jun 17, 2013
Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of medical research has gone missing, leading to a severely corrupted foundation for evidence-based...
by David Harlow | May 12, 2013
The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient...
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