research issues

 

e-pts resources, research issues

“I’d be 400 years behind” – updated, bigtime

-+*One of the most-quoted eye-opening quotes in “Doc Tom” Ferguson’s e-Patient White Paper is this: As Donald Lindberg, director of the National Library of Medicine, explains, “If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.” It’s in a section titled “Clinicians can […]

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e-pts resources, research issues

Ivan Oransky (Reuters, RetractionWatch) joins MedPage Today

-+*I’m thrilled to say that Dr. Ivan Oransky is now VP and editorial director of MedPage Today. From the announcement in Crain’s New York: “Dr. Oransky, previously on the editorial staff at Scientific American and The Scientist and most recently executive editor of Reuters Health, will develop strategies for new MedPage Today content.” We’ve often cited @IvanOransky‘s work here […]

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research issues

PCORI and us

-+*You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps 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. It’s […]

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hc's problem list, research issues

NY Times: “Do clinical trials work?”

-+*Just a quick note on something I’m happy to say we’ve been hollering here for years: A lot of what passes for “evidence” from peer reviewed medical journals is scientifically weak, and has never been verified by an independent lab. That means to be scientific, e-patients and their physicians must be cautious about interpreting any published result: […]

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hc's problem list, policy issues, research issues, shared decision making

Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition

-+*Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of medical research has gone missing, leading to a severely corrupted foundation for evidence-based medicine. If you haven’t read that quick post with 6 minute video interview, please […]

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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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e-pts resources, patient networks, research issues

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 […]

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ethics, 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 […]

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e-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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research issues

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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