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
Great update 20 months later: UCSF Hospital announced Jan 10, 2020 that they’ve made radiology images available through their MyChart portal, and Dr. Mark Kohli tweeted that it’s due to the speech that resulted from this blog post! Here’s their...
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...
by e-Patient Dave | Mar 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...
by e-Patient Dave | Jan 17, 2018
This is a long overdue post of the next session from our Society’s first conference on October 25. The first keynote, about OpenNotes, was posted here, including this note: WOW was our Society’s first conference on October 25 a breakthrough event! Titled...
by e-Patient Dave | Nov 29, 2017
I’m way late in blogging this – too much travel and jet lag – but WOW was our Society’s first conference on October 25 a breakthrough event! Titled ““Participatory Medicine: Transforming the Culture of Care” (web page), it produced...
by e-Patient Dave | Jun 13, 2017
What would you think if your fire department had expensive, snazzy fire trucks that failed to show up when needed? What would you think if a neighboring town had less fancy equipment but was incredibly dependable about using what it had? That’s pretty much the...
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 Ileana Balcu | Jan 10, 2017
Member Angela Lundberg’s blog article was just published for RheumatoidArthritis.net. It discusses the high out-of-pocket costs of health insurance for people who already have insurance. Health Insurance & RA: Dangerously Uncovered Besides the benefits she...
by e-Patient Dave | Nov 21, 2016
As kindlers and promoters of a social movement, our Society for Participatory Medicine keeps a keen eye out for signs of traction in credible places for what we’ve been advocating since 2009: Participatory Medicine is a model of cooperative health care that...
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 9, 2016
As regular readers know, for years we’ve been blogging here about OpenNotes, in which patients and their designated caregivers can read every word their clinicians write, so they can be more informed. The OpenNotes tagline, “Doctors and patients on the...
by e-Patient Dave | Jun 17, 2016
This may be THE most important, articulate speech I’ve seen about profound progress in patient power – and why it matters. This talk by Mark Wilson about OpenAPS, at last Friday’s DiabetesMine D-Data ExChange 2016, contains a metaphor that’s...
by e-Patient Dave | Jun 7, 2016
https://vimeo.com/169280480 I’ve known Eric Dishman for about five years, because we’re both kidney cancer patients. I’ve known that he’s a really sharp thinker, and a high-ranking executive at Intel, deeply interested in and involved in their...
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