Majority of Americans willing to share health data

Patients are becoming more and more comfortable with sharing their health information, but still have reservations, for example, when it comes to sharing credit card purchase history and social media activity, according to survey data.

A recent Truven Health Analytics-NPR Health poll finds that a majority of Americans (68 percent) are willing to share their health information anonymously with researchers. The monthly poll, designed to gauge attitudes and opinions on varying health issues, asked respondents to share views on electronic health records (EHRs) and any potential privacy concerns they may create or cause.

Although 74 percent of respondents indicate that they have a physician that utilizes an EHR, less than a quarter (22 percent) say they would grant their own physician or health plan access to their credit card purchases or social media activity, even if it might improve their health.

Fewer respondents say they have worries about sharing their health records with their health insurer (16 percent), hospitals (14 percent), physicians (11 percent) and employers (10 percent), however. Overall, 56 percent of respondents have reviewed the information kept by their physician, and only five percent of respondents say they have been informed their records were accessed without their permission.

Sharing behavioral health data

Would the response be different when it comes to sharing behavioral healthcare data? Tami Mark, PhD, vice president and director, Center for Behavioral Health Services Research, Truven Health Analytics, says possibly.

“People with mental health and substance abuse conditions are concerned that if they share information about their conditions with medical providers that they will be stigmatized. Unfortunately, this is a valid concern,” she says. “Research shows that providers tend to discount the symptoms reported by people with mental health and substance abuse conditions. This is also tragic because people with severe mental illness die 25 years earlier than other individuals because of untreated or poorly treated medical conditions such as heart disease and diabetes.”

Mark adds that without knowledge about all the medications that a person is taking—for example, use of antipsychotics that put people at risk for metabolic illness—clinicians cannot adequately treat patients.  

“If care is going to be integrated, and people adequately treated, patients need to be able to speak honestly and share information about both their behavioral health and physical health,” she says. “It will take provider training to get to this point.”

Michael Taylor, MD, Chief Medical Officer, Truven Health Analytics, says that willingness to share health information data can also vary by generation.

“Our polling shows that members of the Silent Generation are least likely to be concerned about sharing their medical data with physicians, hospitals and health plans while Gen X is most likely to be concerned,” says Taylor. “And while no age group is interested in sharing social media or credit card data, there are differences across age groups. In light of these findings, it would not be surprising to find similar variations by cohort regarding sharing of behavioral health data.”

Taylor adds that although consumers may be comfortable that their healthcare data are already shared in order to advance and pay for their care, they may simply need specific examples of how sharing their buying and social habits could improve their health before they would consent to sharing it. Lacking examples might make they feel that these habits are irrelevant, or relevant in a very minor way, to their health. 

“Consumers were more willing to share healthcare information with researchers than their own physicians and health plans,” he says. “I think consumers are generally fearful of sharing social media and credit card information due to a lack of trust over how the data would be used, particularly with data related to behavioral health issues.”

The figures in the poll are based on 3,003 participants interviewed from August 1 through 16, 2014.