Society for Participatory Medicine
e-patients.net blog
research issues
e-pts resources, general, research issues, trends & principles
The FDA Patient Network Website – Patient-Centeredness that Walks the Walk
The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA — and earlier in the policymaking process than has been the [...]
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A sign of the times: thyroid cancer patient says TWO docs recommended a patient organization
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 and maintained by thyroid cancer survivors,” with a long list of physicians as partners [...]
Read Moreethics, general, policy issues, positive patterns, pts as teachers, research issues, Why PM
Partnering with patients – about patient centered RESEARCH METHODS
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, as the professions begin to understand the value [...]
Read Moree-patient stories, found on the net, news & gossip, positive patterns, reforming hc, research issues, trends & principles
Health Affairs Patient Engagement Edition – with videos and commentary
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 post. It’s worth reading, it has other interesting tidbits. The briefing was [...]
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PCORI Board Meeting, San Francisco, February 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, evidence-based information that comes from research guided by patients, caregivers and the broader health care community and a vision [...]
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Research – Route funding through consumer organizations
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 patients/consumers in their research design, implementation, and dissemination. The power dynamic favors the researcher, not the patient. Government and industry [...]
Read Moreresearch issues, shared decision making
Finally! An initiative from *within* science to reproduce studies. (And not everyone likes it.)
Correction Monday morning: the project is called the Reproducibility Initiative, not Project. Also, note that we got a comment from co-founder Elizabeth Iorns – discuss! I happened to catch friend Ivan Oransky of RetractionWatch on NPR’s Science Friday last week, and caught an item that excites me because it could strengthen one of the pillars of [...]
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PCORI and Micro-Contracts
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, the Boston contingent of PCORI ambassadors, including S4PM member, Ken Farbstein, made three recommendations to the PCORI [...]
Read Morepolicy issues, research issues
Science Fraud site is shut down by legal threats
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. Ivan Oransky, executive editor of Reuters Health, and Adam Marcus run the Retraction Watch blog, [...]
Read Moree-patient stories, general, research issues, understanding statistics
“Arm” ourselves with information: Health News Review and 2009′s “war on cancer” post
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 medicine is ability to think for ourselves (including providers) equipped with good information (which is distinctly [...]
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