The form asked my permission to share my health data. Then it wouldn’t let me say no.
Over the last year, Alex Rosenblat, Director of Sociotechnical Research, The Markup, interviewed more than 20 patients, healthcare providers, experts and advocates about the privacy forms they must sign to get care at their providers’ offices. Time and again she was told the same thing: Across the country, from large hospital systems to small, private clinics, patients are being asked to sign waivers blindly without knowing exactly what they’re signing. When patients ask to see more, staff usually don’t have an easy way to show them. When patients do get the forms, it tells them all the ways their medical data will be shared and reused, and some of the ways patients can refuse. But electronic systems make it impossible to opt out on the spot, requiring follow up emails. Records sharing between unaffiliated providers through these networks can benefit patients by making their scattered records more visible to the provider who is treating them. But it can also harm patients.