Society for Participatory Medicine
e-patients.net blog
Health Data
research issues, trends & principles
What’s the future for self-tracking?
Stephen Wolfram’s essay, The Personal Analytics of My Life, begins: “One day I’m sure everyone will routinely collect all sorts of data about themselves.” A Pew Internet survey suggests we have a long way to go: a September 2010 survey found that 27% of internet users age 18+ track their own health data online. There [...]
Read Moregeneral, hc's problem list, medical records, policy issues, reforming hc, understanding statistics
Fred Trotter: Data, damn data, and statistics
Why does this blog use the word “damn” so often? A search produces a whopping 38 hits, such as: Fools! Damn fools! And Medical Science (Right, Santa??) Atlantic: Lies, Damned Lies, and Medical Science “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation Lies, Damn Lies And Statistics: Collective Statistical [...]
Read Moregeneral, key people, policy issues, pt/doc co-care, reforming hc, trends & principles
Lab Results for All! Of Data Liberation, Participatory Medicine, and Government 2.0
On September 14, HHS released for comment draft lab results regulations that will, if finalized, effectively bathe the Achilles’ heel of health data in the River Styx of ¡data liberación! Lab results will be made available to patients, just like all other health data. (See the HHS presser and YouTube video from the consumer health [...]
Read Moree-patient stories, general, medical records, policy issues
Caremark, Prescriptions and Personal Information
A friend of mine, Ms. S., recently had an unsettling experience with a company called Caremark (the parent company of pharmacy CVS), whom she fills her prescriptions through. She was reordering a prescription refill she buys through the mail, and needed to pay for it. She tried logging onto their website to pay, as I’m [...]
Read Moremedical records, policy issues
Health Geek Radio: Adam Bosworth’s Straight Talk Express
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 [...]
Read Morepatient networks, policy issues, positive patterns
The Decision Tree: How Better Health Can Scale
“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 [...]
Read Moremedical records, policy issues, Why PM
Save lives first, *then* compete: Simple Interop for Healthcare
This post is my own expression, not an official view of the Society for Participatory Medicine. Vince Kuraitis and David Kibbe are running an excellent series, “Is HITECH Working?”* In last week’s entry they linked to this slide deck by Wes Rishel and David McCallie of IT consulting firm Gartner. See discussion before watching.
Read Moregeneral, net-friendly docs, patient networks, positive patterns, trends & principles, Why PM
Health Data is Useful… if it Informs Conversations
Dr. Roni Zeiger, MD is currently Chief Health Strategist at Google where he has helped create and lead Google Health. He continues to see patients on occasional evenings and weekends at a local urgent care center. Roni earned his MD at Stanford and completed his internal medicine residency at the University of California, San Francisco. [...]
Read Morepolicy issues
Health data rights on CNN
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.
Read Morehc's problem list, medical records, policy issues, pt/doc co-care
What part of “Give us our damn data” do you not understand?
Yesterday I attended “How Access to Information Can Empower Patients and their Caregivers,” conducted by the Consumer Partnership for eHealth. CPeH is an alliance of stakeholder groups sponsored by the National Partnership for Women and Families. It has no web site of its own – it’s just a Partnership for Consumer eHealth (duh), convening to [...]
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