Our Medical Data Must Become Free

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“You have a right to your records.” This week’s WIRED Classics revisits Kat McGowan’s 2016 feature about our medical records. Data generated by your body is routinely captured and sold by health care companies. Shouldn’t you benefit from it, too?

So it’s your right—even your civic duty—to get that information. Just last month, the US Department of Health and Human Services clarified the policy: you should be able to get almost anything besides a psychotherapist’s notes, and in most cases, you should be able to get the information in digital form within 30 days.

There are incentives to imprison your data. If your doctor’s office has it and you don’t, it’s a hassle for you to take your business elsewhere. This hostage-taking unfortunately seems to work: States that permit higher fees for medical-record requests also have, finds a recent study from the National Bureau for Economic Research.

Also, many doctors don’t like the idea that you’d be able to read what they’ve written about you; you might take offense or misinterpret an observation. That worry is mostly groundless, as a project calledshows. Inspired by research suggesting that patients forget about 80 percent of what doctors tell them, the project lets patients read online all the notes from their appointments.

For a long time, one of the rationales for blocking access to medical information is that there wasn’t much patients could do with it except hurt themselves through DIY medical treatments. But today, patients are increasingly being expected to take responsibility for their health care. “The reality is, I see my doctor twice a year for 15 minutes,” says

 

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