With all the talk from a small group of activists about “Data Independence Day” and the Get My Health Data campaign, it’s still unclear whether large numbers of consumers will participate. For one thing, millions of people probably don’t know how to request and manage their health information.
Monday, the Wall Street Journal offered a how-to story on doing just that. While the Journal quoted lots of people we’re already quite familiar with — Dr. Farzad Mostashari, Humetrix’s Dr. Bettina Experton, Dr. Danny Sands, Dr. David McCallie of Cerner, ex-ONC official Joy Pritts and a few others — the guide is pretty helpful. (We do, however, need to chide the Journal for referring to the “Veteran’s Administration,” a misspelled version of a name that hasn’t been used since 1989.)
The story advises people to:
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- Demand their data, explaining that all Americans have a right (under HIPAA, though that’s not explicitly mentioned) to get copies of their medical records.
- Organize their health information. The story cites iBlueButton from Humetrix and Microsoft’s HealthVault, though we’re still not convinced of the usefulness of untethered personal health records, particularly because healthcare professionals tend to tune out anything that doesn’t fit their workflows.
- Share data with healthcare providers, family members and other interested parties, such as schools that need children’s immunization records.
- Generate their own data from home-based medical devices and wearable sensors. As Sands, an internist at Beth Israel Deaconess Medical Center in Boston, put it, “Why should you take a half-day out of your life to see me for 10 minutes and say that you’re fine?”
- Protect their health information from hackers and other sources of data breaches. Many PHRs and fitness trackers are not subject to HIPAA, the Journal noted.
The story cited a 2013 survey from the Office of the National Coordinator for Health Information Technology that found that while 28 percent of consumers had online access to health data from a provider or insurer, but the majority never even logged on.
