Articles on research issues

---

Support @HealthHats Danny van Leeuwen’s nomination for PCORI Board of Governors

by e-Patient Dave | Apr 13, 2018 | 1 comment

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...

Must Do By Midnight: Comment On NIH Plan For Handling ALL Health Data!

by e-Patient Dave | Apr 2, 2018 | 0 comments

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...

TED joins the cry: Why isn’t publicly-funded research publicly available??

by e-Patient Dave | Apr 1, 2018 | 4 comments

  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...

WikiProject Medicine three years on: “converting clinicians to active digital contributors”

by e-Patient Dave | Aug 7, 2017 | 0 comments

“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...

WikiProject Medicine: med students join in producing high quality Wikipedia articles. (You can, too.)

by e-Patient Dave | Aug 3, 2017 | 0 comments

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,...

Prepare for NEJM’s major web event on sharing research data next week

by e-Patient Dave | Mar 29, 2017 | 1 comment

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...

Research & drug development news: European Public Health Alliance joins Europe-wide challenge to patent for Hepatitis C treatment

by e-Patient Dave | Mar 27, 2017 | 0 comments

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...

e-Patient perspective on evolocumab (that new cholesterol study): beyond the headlines

by e-Patient Dave | Mar 20, 2017 | 14 comments

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...

NEJM Data Analysis Challenge: can others create value by seeing researchers’ data?

by e-Patient Dave | Nov 11, 2016 | 0 comments

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...

e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal

by e-Patient Dave | Aug 8, 2016 | 8 comments

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...