by e-Patient Dave | Mar 9, 2020 |
The long-awaited rules on data access have been published this morning from two key parts of the US Department of Health & Human Services. I’ll expand this post with more links as we digest what’s been offered and will unfold in the coming week. The... 
by e-Patient Dave | Jan 26, 2020 |
Many people are asking if they can add their stories or their signatures. Please do so in comments! We’ll copy signatures into the body of the post as time allows. We, the undersigned, are patients, family caregivers and advocates who are desperate to receive... 
by e-Patient Dave | Apr 11, 2019 |
What if you hired a financial manager to handle your money – a trusted professional, like that guy above – then discovered they didn’t know what they were doing, and your records were a mess? How would you feel? That’s pretty much what happened... 
by e-Patient Dave | Apr 10, 2019 |
It’s a big anniversary, this spring – this week, even. Ten years ago the whole issue of personal health data exploded into the headlines. It was about something I wrote here, not having a clue it was any kind of a big thing, but it ended up on the front... 
by e-Patient Dave | Apr 5, 2019 |
SPM member Jeanne Pinder has spent years crusading for price transparency with her startup ClearHealthCosts. She’s formed partnerships with WHYY in Philadelphia, been on CBS News, won awards for investigative journalism with NOLA.com and Fox 8’s... 
by e-Patient Dave | Feb 21, 2019 |
The famous TED Talks site TED.com is the holy grail of many evangelists. Aside from the extraordinary visibility it gives your message, and aside from the validation of your message (the site’s tagline is “Ideas worth spreading”), it means... 
by Casey Quinlan | Nov 16, 2018 |
SPM members Casey Quinlan (yes, yours truly) and Jan Oldenburg were part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors. Here’s the full version of the... 
by Danny van Leeuwen | Nov 11, 2018 |
CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach,... 
by Casey Quinlan | Oct 20, 2018 |
This will be the third, and last, in my short series on attending the Cochrane Colloquium in Edinburgh in September of this year. In the first post, I talked about what that conference was like; in the second, I shared an overview of Cochrane as a global movement to... 
by Casey Quinlan | Oct 13, 2018 |
If you’ve been paying attention, you know that yours truly got the chance to attend the annual Cochrane Colloquium in Edinburgh in September this year, thanks to a travel stipend from SPM, a #PatientsIncluded bursary from Cochrane UK, the hosts of the 2018...
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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