by e-Patient Dave | Mar 30, 2013
Well well well, dare I say the times are changing? Not long ago all we ever heard was “Stay off the internet.” But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.org to him! (Twitter: @ThyCaInc) It’s “created...
by e-Patient Dave | Feb 24, 2013
This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine. It appears the world is starting to change, in a very good way. We’ve often written about the changing culture of medicine,...
by Ileana Balcu | Feb 15, 2013
The Health Affairs February 2013 issue is titled “New Era of Patient Engagement” and the content matches the title. Nick Dawson describes the day in his blog post Health Affairs is the new shirtless dancing guy Here’s a short extract from the blog...
by Danny van Leeuwen | Feb 9, 2013
The Patient Centered Outcomes Research Initiative (PCORI) was established in 2010 by the Affordable Care Act with a mission to help people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity,...
by Danny van Leeuwen | Jan 16, 2013
This is the third of 3 recommendations a group of Boston-based PCORI Ambassadors made to the PCORI Board in November. The first was Expanding the Scope of Research Questions Funded, the second, Micro-contracts. Researchers typically struggle to include...
by e-Patient Dave | Jan 6, 2013
Addition Oct 2014: added link to the Reproducibility Initiative, now at validation.ScienceExchange.com Correction Monday morning: the project is called the Reproducibility Initiative, not Project. Also, note that we got a comment from co-founder Elizabeth Iorns...
by Danny van Leeuwen | Jan 4, 2013
Susan Woods responded to my previous post, PCORI and Just-In Time Decisions with the research funding system doesn’t really work for anyone. It is in concrete, Agreed.  Micro Contracts could be a small intervention that could help move the dial. (As a reminder,...
by e-Patient Dave | Jan 2, 2013
Jan. 3 update: See important update at bottom – the site owner has identified himself. I’m extremely troubled by this development, so much so I’m stopping a tight-deadline task to write this. Let’s hope that as things unfold this will resolve....
by e-Patient Dave | Dec 31, 2012
Some things are what they call “evergreen” – persistent value, never out of date. Two come together for this year-end post. __________ A lot’s changed since our society was formed in 2009, but year after year a core skill for participatory...
by e-Patient Dave | Dec 30, 2012
SPM member Danny van Leeuwen @HealthcareHatsis an active member of PCORI’s patient engagement workgroup. A month ago he mentioned a post about PCORI on WBUR’s CommonHealth blog, Medical Research: By Law, It’s All About You. I said “You should make...
by e-Patient Dave | Dec 29, 2012
This encouraging news is adapted from the November cover story of Radboud University’s magazine Radbode (PDF, in Dutch, 1.6MB). Thanks to @LucienEngelen, initiator of this project, for forwarding it to us. Not surprisingly, Lucien’s also the creator of the...
by Michael Millenson | Dec 11, 2012
The new Patient-Centered Outcomes Research Institute (PCORI) has been asking different stakeholders about the most important issues to address with the hundreds of millions of dollars the quasi-governmental group will shortly be doling out in grants. Not surprisingly,...
by e-Patient Dave | Nov 1, 2012
Next in our series of posts by SPM members on their experience at last weekend’s PCORI workshop. See Monday’s introductory post. I recently met (face to face) Danny van Leeuwen, one of the newer members of our society. He’s a sensitive, caring...
by e-Patient Dave | Oct 31, 2012
Second in a series announced yesterday of posts by SPM members who attended last weekend’s PCORI workshop. This one’s from Kathy Day, an avid e-patient advocate from Maine. This originally appeared here on her blog, on Monday. Why PCORI made me endure...
by e-Patient Dave | Oct 30, 2012
As noted in today’s earlier post, we’re starting a series of posts by SPM members who participated in last weekend’s PCORI workshop. Kelly Young (@RAWarrior) is one of the smartest e-patients I’ve ever seen anywhere. Aside from her technical...
by e-Patient Dave | Oct 30, 2012
All: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society) and anyone else. Please write to blog@participatorymedicine.org, and disregard the auto-reply that you’ll get. __________________Â This post started...
by Susannah Fox | Oct 5, 2012
(A cross-post from susannahfox.com) I had the great honor of being part of the first Medicine X conference at Stanford University last weekend. I presented a sneak preview of new survey results collected by the Pew Internet Project and the California HealthCare...
by Kathleen O'Malley | Sep 27, 2012
This blogpost by Chuck Alston and Patrick McCabe originally appeared on the Health Affairs blog. Many thanks to SPM member Michael Millenson for alerting e-Patients.net to this piece. It has been 22 years since David M. Eddy — the heart surgeon turned...
by Susannah Fox | Sep 16, 2012
My schedule only allowed me to attend Day One of the fantastically rich Medicine 2.0 Congress being held this weekend in Boston. I thought I’d share my impressions and notes in case they spark inspiration for other people, as each presenter and hallway...
by Susannah Fox | Sep 7, 2012
I witnessed an intriguing Twitter conversation between Christy Collins and Greg Biggers about disease names, so I asked Christy to write up her thoughts. It is an honor to host this guest post: By Christy Collins When I started an advocacy and research organization...
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