By David Harlow | February 27, 2016
The recent Precision Medicine Initiative Summit at the White House saw dozens of private entities committing to join with the administration in supercharging the effort to enroll one million patients into precision medicine research programs, collecting and securely... By e-Patient Dave | January 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 | December 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 | November 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 | August 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. | April 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 | February 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 | January 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 | October 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 | July 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...
“My Data and Me”: Brenda Denzler’s amazing story at #FHIRDevDaysNovember 24, 2019
A Romanticised History of SPMNovember 23, 2019
Jane Sarasohn-Kahn: Social Determinants of Health – My Early Childhood Education and Recent Learnings, Shared at the HealthXL Global GatheringNovember 20, 2019
“Training medical students how to communicate with E-patients”November 19, 2019
ConservatorsNovember 15, 2019
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