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 assertions are self-evident, basic, essential. The right to have information about oneself? – why the fuss? – this is America after all! Yet the practical and psychological impediments are so immense, and the impact on an individual’s failing health and the country’s economic troubles so potentially redemptive, we get why it’s so important to start spreading the news/ make a brand new start of it.
Much has been explained in the declaration’s FAQs, in the 30+ blog posts (see Gilles’ below, and e-Patient Dave’s here), and very succinctly in hundreds of tweets.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
Recent Posts
- Majority of consumers use social networks to influence buying decisions (Gartner)
- Why Mark Boguski joined the Society for Participatory Medicine
- Moving the mountain: Producing evidence and results on methods for better care
- Dear White House: The Personal Data Challenge
- Initial OpenNotes report: project description and baseline attitude survey
Recent Comments
- Susannah Fox on Majority of consumers use social networks to influence buying decisions (Gartner)
- Annie Stith (@Gr8fulAnnie) on Dear White House: The Personal Data Challenge
- complementaire sante on Why Participatory Medicine?
- On Ideas | The future of healthcare communications on The e-patient white paper: Seven Preliminary Conclusions
- Dave deBronkart on Why Mark Boguski joined the Society for Participatory Medicine
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