NPR Discovers Privacy Victims, Buries Lead

NPR aired what it must have seen as a heart-warming story about how social media is making it possible to do medical research on people with rare conditions, such as Katherine Leon, who at the age of 38 suddenly suffered a severe heart attack caused by spontaneous coronary artery dissection, or SCAD.

It is heart-warming, but surely there’s a public policy problem here too.  Why exactly was medical research on this condition being obstructed?  Turns out, the culprit is American privacy law. 

Eventually Leon found the opportunity she needed. At a symposium run by at the Mayo Clinic, she spotted cardiologist Sharonne Hayes.

“She came up to me during one of the breaks at the meeting,” Hayes says, “and she said, ‘Oh, Dr. Hayes, what’s Mayo doing for research on SCAD?’ ”

“And she said, ‘Well, we aren’t doing anything,'” Leon says. “I said that I knew over 70 women through an online community who had it all over the world, that we were in contact.”

She asked Hayes if she would be willing to research SCAD, and Hayes said she would.

Hayes set up a virtual patient registry and allowed patients from all over the world submit their medical records and scans online. In the first trial, Mayo enrolled 12 patients — and had to turn people away.

Hayes is now working on a second trial where she hopes to enroll as many as 200 patients. She says traditionally, one of the biggest barriers to studying rare diseases are the privacy laws that make it difficult to access hard-to-find patients.

“I could not legally, ethically send out an email to all Mayo patients for instance, and say, “Oh, anybody got SCAD? You want to sign up for my study?” she says.

But the rise of social media has allowed patients to do for themselves what researchers like Hayes can’t: spread information about research. Through their personal Facebook pages, chat rooms and message boards, patients are recruiting each other in a kind of virtual word-of-mouth.

Wow, a privacy law with unintended consequences.  Who could have predicted that?

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