by Dave deBronkart | Mar 29, 2017 |
In November we posted about an extraordinary development: NEJM Data Analysis Challenge: can others create value by seeing researchers’ data? The project has come to fruition, and the big event (free) is next Monday-Tuesday. The question for us: What’s the impact...
by Dave deBronkart | Mar 27, 2017 |
An announcement today in Europe (press release below) brings a new angle to the copious US coverage of drug pricing, such as predatory pricing of the EpiPen and the smirking, seemingly sociopathic Martin Shkreli. For the drug described below, the Médecins du Monde...
by Dave deBronkart | Mar 20, 2017 |
Please cite this post as “by Dave deBronkart, Marilyn Mann and Peter Elias MD” or, on Twitter, “@ePatientDave, @MarilynMann & @PHEski.” Our blog software only allows listing one author but they provided 2/3 of the content. The medical news...
by Dave deBronkart | Nov 11, 2016 |
This is big. Please share it with anyone you know who’s a believer in open data. You may have heard that back in January the New England Journal of Medicine created a firestorm by saying “parasites” about people who want to see a researcher’s...
by Dave deBronkart | Aug 8, 2016 |
We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else?? We’ve written before about e-patient Sean...
by David Harlow | Feb 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 Dave deBronkart | 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 Dave deBronkart | 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 Dave deBronkart | 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...
Lived Experience + Expertise = ValueJuly 22, 2017
#BMJDebate tweetchat: “terms of engagement” for patient voices, noon Thursday ETJuly 12, 2017
Millenson in BMJ: When “patient centred” is no longer enough: the challenge of collaborative healthJuly 7, 2017
Webinar today, 11am ET: Increasing patient involvement in assessing new treatmentsJuly 5, 2017
What My 90-Year-Old Mom Taught Me About the Future of AI In Health Care (WBUR)June 21, 2017
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