By
e-Patient Dave
| June 5, 2018
This is so exasperating. For years we at the Society for Participatory Medicine have been among the leaders of the movement for patients to have access to their medical records, in EMRs and everywhere. We’ve blogged repeatedly (and advocated in DC) about patient...
By
e-Patient Dave
| May 14, 2018
As regular readers know, this blog has long been friends with The BMJ (formerly the British Medical Journal), especially because of its world-leading Patient Partnership campaign including the Patient Advisory Panel, which includes several SPM members and has an...
By
e-Patient Dave
| May 14, 2018
Posted today on our SPM Connect member forum by SPM vice-chair Joe Ternullo Join me in cheering on SPM members Lorraine and Gene Sacco, founders of the Reid R. Sacco Adolescent & Young Adult Cancer Alliance. (@AYACancerAllian) The Chronicle Episode “Beyond...
By
e-Patient Dave
| April 27, 2018
In the interest of speed, this is a quick note for interested parties – apologies for minimal explanation. 90 minutes from now, 2:30 pm ET on Friday 4/27, at the Health Datapalooza conference in DC, people will gather in an “unconference” session to...
By
e-Patient Dave
| April 18, 2018
Our Society for Participatory Medicine’s presence and impact in the world is escalating this year, thanks to many factors. A big one is the addition of activist board members like Burt Rosen of member company HealthSparq, and another is that our time has come. A...
By
e-Patient Dave
| April 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
| April 12, 2018
As a social movement works its way through a culture, sometimes we discover surprising disconnects or parallels. Dr. Danny Sands and I were recently interviewed for the Psych Central podcast, and in the process, host Gabe Howard said something exactly like that....
By
e-Patient Dave
| April 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
| April 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
| March 6, 2018
UPDATE FOR ATTENDEES: Try to arrive 10 minutes early — 10:50 am — to get oriented. On arrival a host will scan your badge and point you to the big round “Discovery desk” where we’ll gather. We’ll talk a bit for 10 minutes, then...
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