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 John Grohol | Jan 28, 2020 |
Epic is a widely used Electronic Health Record (EHR) system by thousands of hospitals across the United States. There’s a very good chance that your physician uses Epic software in their everyday practice. Among many other tasks, Epic’s software helps... 
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 | Nov 24, 2019 |
SPM member Brenda Denzler had Inflammatory Breast Cancer (IBC), which was followed by years of intractable symptoms that her doctors couldn’t diagnose – all their tests kept saying she was “fine.” “But I live with this body,” she... 
by e-Patient Dave | Nov 1, 2019 |
This is a cross-post from my personal blog. The organizers of the FHIR #DevDays conference next month have announced the four finalists who will come to Amsterdam to present their ideas to a panel of judges. I’ll copy/paste here from the conference’s... 
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 | Jan 7, 2019 |
On Facebook last Friday our member Carla Berg Nelson posted briefly about a new Psychology Today blog post, Data: the New Window into Humanity, by John Nosta. She tagged a number of other members (and non). I know and respect Nosta from his days creating a LinkedIn... 
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 e-Patient Dave | Oct 15, 2018 |
Here’s the last in our series of posts by and about the outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston, attached to the prestigious Connected Health conference. Last chance: register here....
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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