Society for Participatory Medicine
e-patients.net blog
Patient Community
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, net-friendly docs, patient networks, positive patterns, pt/doc co-care, pts as teachers, reforming hc, trends & principles
e-Patients and Participatory Physicians Creating Podcasts
I can barely contain my happiness (oh heck, I’ll let it spill) at this: participatory patients and physicians creating educational content, using free internet software tools, and posting it for people to read (free) around the world. I’m a member of the ACOR kidney cancer patient listserv, and a patient at Boston’s Beth Israel Deaconess [...]
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Social Healthcare: “Medicine in the Age of Twitter”
Physician Pauline Chen writes about “Medicine in the Age of Twitter” for the New York Times. The article suggests the need for our upcoming peer-reviewed Journal of Participatory Medicine: …a quick scan through peer-reviewed journals reveals only a handful of articles, and no evidence-based guidelines, to guide doctors on the use of social media. It [...]
Read Moree-pts resources, trends & principles
Immediate data requested. Please share with breast cancer patients everywhere.
Chapter 5 of the e-Patient White Paper is E-Patients as Medical Researchers. It details how, in the absence of sufficient medical data for their cases, patients and parents have conducted extraordinary research, time after time, often stunning the medical professionals. A key sentence in Chapter 5 is “One of the great benefits of patient-initiated research [...]
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E-patient Interview: Stirrup Queen
Cheryl Miller has written an excellent article, “Blogging Infertility,” in The New Atlantis. She brings up a lot of themes that have been echoing throughout my other reading: a once-silent group newly empowered by the internet; teaming patients with similar profiles; home-care tips (there could be a whole blogroll on injections, btw, starting with AmyT [...]
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