research issues

 

research issues

Detecting Emotional Contagion in Massive Social Networks (PLOS One)

This isn’t directly related to participatory medicine per se, but for students of the social web and “health is social” factors, this will be fascinating and important. (In my speaking work, it’s always useful to cite new research that sheds light on how social connections work and how the internet affects things.) Background Many here are […]

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e-pts resources, medical records, PM Tech, policy issues, pt/doc co-care, research issues, trends & principles

Emory study: “PHR resulted in significantly improved quality of care and use of services”

Long-time readers will recall a hallway conversation I had at a conference in 2011 with Silke von Esenwein PhD of Emory University’s Center for Behavioral Health Policy Studies, who was presenting a poster with preliminary results of a study in process. The post was titled Safety net populations do benefit from online PHRs, and included the […]

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policy issues, research issues, shared decision making, trends & principles

Matthew Katz on 23andMe: “Return to Sender, Genome Unknown: Seven Reasons I Will Return My Personal Genome Kit”

Radiation oncologist Matthew Katz is a lifetime member of SPM who blogs regularly for the American Society of Clinical Oncology and Mayo Clinic Social Media Health Network. In this guest post he offers his view of 23andMe, the personal genomics service that’s in the news because of the FDA’s recent ruling. That ruling has generated enormous controversy, on the […]

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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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