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Poll: Most Americans would share health data for research

January 9, 2015

Americans, by and large, don’t seem all that worried about what happens to the information in their medical records.

A NPR-Truven Health Analytics Health Poll found that data privacy didn’t appear to bother most respondents. Privacy worries ran highest for information held by health insurers, but even then only 16 percent of people expressed concern.

Because we’re nerds, we were curious to learn more about how Americans feel about sharing health data for research purposes. So we interviewed 3,010 people by cellphone, landline and online in December.

A majority of the people we asked said they would be willing to share information anonymously with health care researchers. Overall, 53 percent said that would be OK and 47 percent said no.

But the proportion of people willing to share information for research purposes was 15 percentage points lower than when we asked the same question in August and found that 68 percent were game.

Why the change? Part of it could be that when we asked the first time around the question came after others on the use of electronic medical records by doctors, employers, insurers and hospitals. The context might have affected how people responded.

It could also reflect heightened sensitivity about data security. “Over the last quarter, major privacy breaches have been a hot topic in American culture – from leaked pictures of celebrities to the extensive Sony hack,” says Dr. Michael Taylor, chief medical officer at Truven Health Analytics. “We don’t know whether it’s a temporary response influenced by these or other factors, but Americans may be more protective of the information they are willing to share electronically.”

There was some variation in the latest poll among people who expressed a willingness to share anonymized data. Sixty-one percent of adults younger than 35 were fine with the idea compared with only 43 percent of people 65 and older.

The possible topics of research didn’t matter much to people who said they were willing to share. Every category — ranging from safety issues to reining in health costs — scored support from at least 90 percent of the potential sharers.

And most people didn’t seem to care who would be using the data, whether they would be researchers in government, universities, drug companies or consulting firms. Comfort with these researchers ran between 87 and 92 percent.

Support for university professors varied more than that for other categories. Ninety-five percent of sharing-inclined people under 35 were OK with giving anonymized data to professors compared with just 74 percent of people 65 and older.

The overall margin for error for the poll is plus or minus 1.8 percentage points. You can find the full set of questions and responses here and the findings from previous NPR-Truven Health Analytics Health Polls here.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.

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