by Casey Quinlan | Aug 5, 2018 |
Guest post by SPM Lifetime Member Joshua C. Rubin, JD, MBA, MPH, MPP Last week, Facebook’s unprecedented stock price collapse triggered by concerns over personal data privacy, as well as same-day commentary regarding GlaxoSmithKline’s investment in 23andMe to gain... 
by e-Patient Dave | Jul 15, 2018 |
TONIGHT: 9 pm Eastern time. #BCSM Twitter chat on the latest Facebook privacy issue. This time the data leaked is from a patient group. FB says it’s a nothingburger. What do you think? Facebook has a record of privacy leaks. The poster shown here (click to... 
by Michael Millenson | Jun 27, 2018 |
This is the second of two posts about this important policy issue regarding portability of our medical records. The first provided background, with link to a PDF of the comments SPM submitted, largely authored by Michael Millenson, who provides this essay for context.... 
by e-Patient Dave | Jun 27, 2018 |
This is the first of two posts about this important policy issue regarding portability of our medical records. The second is by Michael Millenson, who did the lion’s share of this work, as noted below. Our Society’s Advocacy and Policy chair Vera Rulon... 
by e-Patient Dave | Jun 19, 2018 |
I know there are numerous initiatives along these lines so please circulate this widely. Help publicize and share what others are doing to incorporate patient perspectives in the present and future of healthcare! I’ve received the following request from Luke... 
by e-Patient Dave | Jun 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 Danny van Leeuwen | May 6, 2018 |
As you may know from previous posts, I sit as a patient/caregiver stakeholder on a Center for Medicare and Medicaid Services (CMS) technical expert panel (TEP) about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS... 
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...
What Healthcare Can Learn from Mr. RogersAugust 7, 2018
Biomedical Knowledge Must Be Mobilized to Save Lives, Not Privatized in the “Last Mile”August 5, 2018
Announcing SPM’s new Doc Tom Awards. Nominations are open!August 3, 2018
Study: Engaging patients in co-design works. Join us at our conference!July 26, 2018
Patient Ownership of Data?July 22, 2018
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