Society for Participatory Medicine
e-patients.net blog
shared decision making
general, others' e-patient stories, policy issues, pt/doc co-care, pts as teachers, shared decision making, trends & principles
Angelina Jolie, BRCA1, Public Health, Patent Law — & the Empowered Patient
Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times, Angelina Jolie is clearly trying to get the message out that radical choices must sometimes be made in order to increase one’s chances of [...]
Read Moregeneral, PM Tech, reforming hc, shared decision making
The Black Box of You: Why the Quantified Self is so Frustrating Today
Imagine a black box. You can feed all sorts of information and data into it all the live long day. But the amount of data you can get out of it is limited. It just stares back at you with its blank, neutral sides. It can tell you things like where it was manufactured, or [...]
Read Moree-patient stories, pt/doc co-care, pts as teachers, shared decision making
Clinicians are from Mars, e-Patients are from Venus
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems. Caring about best health and getting [...]
Read Morept/doc co-care, shared decision making
Medication Management: Experience of Engaged Clinicians and Empowered Patients
The overlap between the clinical aspects of our health journey and behavior of health team members occurs most often in medication management. Effective medication management depends on empowered, informed patients and caregivers prepared for clinician visits, and engaged clinicians skilled at working with activated patients. This strong relationship of health team members advances patient safety, [...]
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 [...]
Read Morepolicy issues, research issues, shared decision making
PCORI and Just-in-Time Decisions
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 short blog posts about things like this!” And he did. SPM members are welcome to write [...]
Read Moregeneral, key people, news & gossip, positive patterns, pt/doc co-care, research issues, shared decision making
“The Patient as Partner” in Medical Research at Radboud University
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 heavily patient-centric Future of Health conferences, which started with TEDx Maastricht 2011. Editorial note: I heavily edited [...]
Read Morenet-friendly docs, reforming hc, shared decision making, trends & principles, Why PM
Nancy Finn: Collaborative Teams that Include Patients Make Care Coordination Possible
Today’s guest blogger, author and SPM Secretary Nancy Finn, originally posted this essay on her personal blog. Care coordination requires that the right information reaches the right people within an optimal time frame, so that a patient’s full information is always at the point of care, and all of the follow-up clinical work, as well [...]
Read Moregeneral, policy issues, reforming hc, research issues, shared decision making
Health Affairs: An Evidence-Based Approach To Communicating Health Care Evidence To Patients
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 mathematician and health care economist — put the term “evidence-based” into play with [...]
Read Moree-pts resources, general, hc's problem list, reforming hc, shared decision making
Marya Zilberberg: ACOG’s dysmenorrhea FAQs: Evidence of propaganda?
Guest blogger Marya Zilberberg is the author of Between the Lines: Finding the Truth in Medical Literature. She originally posted this piece on her blog Healthcare, etc. I have been looking up information on endometriosis for a friend of mine, and came upon this from the American College of Obstetricians and Gynecologists: So I bit [...]
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