Society for Participatory Medicine
e-patients.net blog
Health Care Professionals
ethics, general, others' e-patient stories, shared decision making
Kari Ulrich: Experienced from both sides of the bed
This guest post by Kari Ulrich, RN, originally appeared in a fibromuscular dysplasia e-patients’ blog. The November 2011 issue of Reader’s Digest reads in big, bold print, “50 Secrets Nurses Won’t Tell You.” Articles like this create fear and mistrust in the patient community.
Read Moree-pts resources, reforming hc, Why PM
The Patient Activation Measure (PAM): a framework for developing patient engagement
In any movement there’s a stage of maturation, where aspirations get fleshed out with specifics. That time is arriving for participatory medicine. As patient engagement (aka consumer engagement) earns attention, the question increasingly arises: “Where do we start? What can we do?” More specifically, “What do we mean when we say ‘patient engagement’?” CFAH Engagement [...]
Read Morepolicy issues, reforming hc, Why PM
“Design and create a safe, decent, patient centered healthcare system.”
Yesterday the New York Times reported that some health insurers have applied to regulatory agencies to push premiums sharply higher - usually double-digit increases, while citizens are suffering. This falls on top of the 11 year history reported last year by the Kaiser Family Foundation: wages and inflation are up ~40%, while health costs and worker [...]
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2010: The Year of Open Streams & Fax Machines
I started writing this post while watching a livestream of the LeWeb09 conference in Paris and finished it while watching a livestream of TEDxSV. Open Streams are of many kinds and shapes. They are completely changing how we consume information, news & entertainment. .. It could be a joke and it could be funny! Instead, it [...]
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A Participatory Medicine Story
The nascent field of Participatory Medicine is currently in the ”debating and defining” stage. It has been tentatively defined by the steering group of the Journal of Participatory Medicine as: …a cooperative model of health care that encourages and expects active involvement by all connected parties (health care professionals, patients, caregivers, etc.) as integral to the full continuum of [...]
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My Right to Data, Happiness, and a Long and Healthy Life
“To alienate [patients] from their own decision making is to change them into objects.” – P. Freire, Pedagogy of the Oppressed The newly drafted Declaration of Health Data Rights, created by patient advocates, caregivers, health care professionals, technology and policy experts, and entrepreneurs (in some cases, all attributes in the same person), states that its [...]
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Patient Power: Andrew Schorr
Andrew Schorr‘s recent comment also merits a separate post: I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way. I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a [...]
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