by e-Patient Dave | Apr 13, 2018 |
Longtime SPM member Danny van Leeuwen (@HealthHats) is seeking nomination and support as a “patient/caregiver stakeholder” seat on the Board of Governors of PCORI, the Patient-Centered Outcomes Research Institute, about which we’ve blogged often... 
by e-Patient Dave | Apr 2, 2018 |
Guest post by SPM member Francie Grace. Here’s a last minute Important item for your Monday To Do list. Spotted in a reminder tweet Friday from former U.S. Chief Data Scientist D.J. Patil (@dpatil): Hey data scientists, just a few days to give the @NIH... by e-Patient Dave | Apr 1, 2018 |
For years many have argued that it’s wrong for research that’s funded by the government (i.e. taxpayers) to be hidden from the people who paid for it (taxpayers) by hiding the results behind paywalls. This tradition not only makes it harder for... 
by e-Patient Dave | Aug 7, 2017 |
“To help inform patients of the best scientific knowledge…” “…as future physicians, they realize that part of their contract with society is to meet patients where they are and to help inform patients of the best of scientific knowledge about... 
by e-Patient Dave | Aug 3, 2017 |
I’m taking the extraordinary step of rerunning, verbatim, an entire post from 2014 about this important development. Why? Because tomorrow an update is coming, and to fully appreciate the news, you need to appreciate the background. Here’s the original,... by e-Patient Dave | 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 e-Patient Dave | 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 e-Patient Dave | 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 e-Patient Dave | 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 e-Patient Dave | 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...
Web introduction to a crowd-sourcing platform for COVID-19 “information therapy”March 19, 2020
COVID-19 information resources: Peter Elias MD and othersMarch 17, 2020
Long-awaited US rules on data access and information blocking are outMarch 9, 2020
Three minute patient video nails the suffering from information blockingMarch 9, 2020
“Help me see the dragon I’m slaying”: pathologists meeting directly with patientsFebruary 28, 2020
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