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A Worry In Theory, Medical Data Privacy Draws A Yawn In Practice

How concerned are people about the privacy of their medical information? The NPR-Truven Health Analytics Health Poll found worries were low.
How concerned are people about the privacy of their medical information? The NPR-Truven Health Analytics Health Poll found worries were low.

When it comes to health records, how concerned are Americans about what happens to their personal information?

We asked in the latest NPR-Truven Health Analytics Health Poll. And, in a bit of surprise to me, the responses showed that, in general, worries don't run very high.

First, we learned that nearly three-quarters of people see doctors who use electronic medical records. So the chances are good that your medical information is being kept digitally and that it can be served up to lots of people inside your doctor's office and elsewhere.

Health insurers, employers, hospitals and doctors have easier access than ever to our records. Think about the confidentiality waiver you've probably signed that says the doctor's office can share information with your insurance company, for instance.

Is data privacy a problem? Only 11 percent of people have concerns related to their doctors. About 14 percent of respondents had privacy concerns related to hospitals. Privacy worries about health insurers ran highest at 16 percent.

Worries about employers were low — at 10 percent. "Maybe the fact that employers have had this type de-identified information for so many years, employees are finally getting used to it," says Dr. Michael Taylor, chief medical officer for Truven Health Analytics. "Personally, I think it's good," says Taylor, who was previously medical director for wellness programs at Caterpillar Inc. "Most employers with whom I deal want to help their employees be healthier, and they need information."

Still, there was some variation in the responses, with 22 percent of people in households making more than $100,000 a year worried about how employers treat the data.

A recent survey on the broad topic of privacy by the Pew Research Internet Project found that people feel that health details, including medicines they take, is among the most sensitive information they have.

For our part, we wondered how many people have experienced a privacy privacy breach. About 5 percent of people said they'd been told their records had been compromised or accessed without permission.

Research done by the Ponemon Institute, Traverse City, Mich., suggest athat about 1.8 million American households experienced medical record theft in 2013.

Survey work by Ponemon found that people say they are concerned about security and privacy in a general way. But when asked more specifically, medical record privacy usually drops to the lowest quartile of concern, said Larry Ponemon, chairman and founder of the Ponemon Institute.

"People are just not worried about privacy" of their medical records, he told Shots. "They're thinking about other things."

What do people think about some uses of data not directly related to their care?

The NPR-Truven Health poll found that two-thirds of people said they would be willing to share their health information with researchers, as long as it was scrubbed of identifying details.

Finally, would people be willing to let doctors, hospitals and insurers in on their credit card info and social media antics if the information would be used for health improvement? Not a popular idea. A little over three-quarters of people said no way.

The poll questions were posed by cellphone, land line and online during the first half of August. More than 3,000 adults participated. The margin for error was plus or minus 1.8 percentage points.

You can find the list of questions and responses here and find the past polls here.

Copyright 2021 NPR. To see more, visit

Scott Hensley edits stories about health, biomedical research and pharmaceuticals for NPR's Science desk. During the COVID-19 pandemic, he has led the desk's reporting on the development of vaccines against the coronavirus.