research issues

 

positive patterns, pt/doc co-care, pts as teachers, research issues

WSJ: “Researchers are asking patients to help design clinical trials.”

I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the “European ASCO” cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo! The lede: Scientists […]

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positive patterns, reforming hc, research issues, shared decision making

Researcher seeks patient input: what should a stent decision aid include?

Preface by e-Patient Dave: We have often written here (see posts) about Shared Decision Making, in which patients are engaged in choosing among treatment options. A key method is to give patients a “decision aid” (DA) – a document or video that explains the options, with pro’s and cons. A vital question in the design […]

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found on the net, positive patterns, research issues, trends & principles

From BMJ: The BMJ’s own patient journey – Seeks to promote patient partnership by walking the talk

An interesting editorial in the BMJ (British Medical Journal) describes BMJ’s path to including patients in reviewing the articles and research published in the Journal. I hope this initiative will be successful and copied by the healthcare world. http://www.bmj.com/content/348/bmj.g3726 Our new strategy aligns with our “too much medicine” and “open data” campaigns and our support […]

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e-patient stories, e-pts resources, general, news & gossip, others' e-patient stories, Patient Conference Participation, patient networks, positive patterns, practice variation, pt/doc co-care, pts as teachers, reforming hc, research issues, shared decision making

Patients Invited! Health Informatics Conference seeks Patient Participation

An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada. Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we unleashed imagination” provides the motivation for this year’s conference. The main conference themes are: Patients Talking The […]

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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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