Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care. What does it mean when millions of people flock to share/overshare information, even as Facebook’s default privacy settings have slowly become openness settings (but the company maintains radio silence)? Pew Internet research shows that a sizeable […]
Adam Bosworth of Keas delivered quite a lecture yesterday at the Alliance for Healthcare Foundation. He talks about how Americans don’t really like data (but they need it), why “frugal innovation” is the best path for start-ups, how e-Patient Dave shook up the EHR world, why health privacy legislation would kill patient-driven research, and why […]
“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.” “Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to […]
Elizabeth Cohen, CNN Senior Medical Correspondent, captured the zeitgeist of the health data rights movement in today’s must-read article, Patients demand: ‘Give us our damned data’. An e-patients all-star team is quoted in the story: Jen McCabe, Regina Holliday, e-Patient Dave, Alan Viars.
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 […]
What would you say to policymakers who are discussing the implementation of a national health information infrastructure? Here’s what I’d say: E-patients want access to tools and information. Many will find what they need, many will not. You can help.