Society for Participatory Medicine
e-patients.net blog
Health Data
general
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 [...]
Read Moree-pts resources, pts as teachers, Why PM
ICMCC: Perhaps the single most valuable e-patient info site
In last weekend’s post about “patients want all their data” I said I wished I’d known about the article (published mid-May) during last summer’s health data debates in Washington. Incredible Dutch e-patient Lodewijk Bos tweaked me, saying he’d posted it the day it was released. That led me to ask him to offer email subscriptions. [...]
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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 [...]
Read Morepolicy issues, positive patterns, pt/doc co-care, trends & principles, Why PM
Give patients (that’s you) access to all their (your) data – so they can help
Cross-posted from my website, ePatientDave.com – the happy home for my new business! I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why. A new world of [...]
Read Moremedical records, policy issues, reforming hc
Health IT Policy: E-patients want access
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.
Read Morepolicy issues
HIPAA’s Broken Promise
If you hate HIPAA, it’s your lucky day. Paul Ohm is handing you ammunition in his article, “Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization.” His argument: our current information privacy structure is a house built on sand. “Computer scientists…have demonstrated they can often ‘reidentify’ or ‘deanonymize’ individuals hidden in anonymized data [...]
Read Morenet-friendly docs, policy issues, positive patterns, pt/doc co-care, trends & principles
Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?
Patient safety is important, and the safety of internet health data has been an ongoing concern for ages. We now have a great addition to the literature: “Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?” It’s an editorial in the new issue of the Journal of [...]
Read Moremedical records, news & gossip, policy issues, reforming hc, trends & principles
Civil rights activist Dorothy Tillman vindicated
a year after arrest for demanding medical records
Important addition 7/16/09 6:40 pm EDT: Be sure to read the HIPAA clarification by commenter “SLC” below, and any subsequent discussion. Dorothy Tillman was requesting her aunt’s records, not her own. This doesn’t change the need (IMO), but it does put a different light on the event. This is a tiny item, which we might [...]
Read Moregeneral, hc's problem list, medical records, policy issues
Dx: Revolting. Rx: Revolt.
Tuesday night, endorsement #906 on HealthDataRights.org came from a Judy Beckman, who says: “I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????” Indeed, why? Whose data is it, anyway? This spring I’ve been learning (slowly) about HIPAA – the immense [...]
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Question For President Obama
Guest Post: Cindy Throop from http://Open-Health.us, a participatory forum dedicated to effectively including patients in the discussion, planning, and evaluation of health care reform. A lot of money is about to be invested in health care, particularly into health information technology (HIT). Does this mean that when your health care provider(s) implement electronic medical records, [...]
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