Society for Participatory Medicine
e-patients.net blog
Assertions
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Participatory medicine and health data rights on NPR
NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on [...]
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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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