Two-thirds of Americans willing to share health data with researchers

By Jonah Comstock
Share
NPR-Truven Graphic from NPR

According to a new survey from Truven Health Analytics and NPR, 68 percent of American consumers are willing to share health information with researchers, but this group of people is more likely to be wealthy, well-educated, and young.

Truven surveyed 3,000 Americans via landlines, mobile phones, and the web, with the group filtered by generation, education level and income level. They asked questions about physician connectedness and data privacy.

The survey found that overall, only 74 percent of respondents said their physician had an electronic health record. However, that figure includes 19 percent of respondents who said they don't have a physician at all -- only 6 percent reported having a physician with no EHR. Millennials were most likely to report not having a physician (36 percent) whereas those in the "Silent Generation" were the least likely (just 2 percent). Although 74 percent had an electronic health record, only 44 percent reported having accessed the health records their physician kept on them.

Other questions in the survey centered on privacy and data sharing. Respondents were asked whether or not they had concerns about the privacy of data they had already shared with healthcare stakeholders. Of the four groups -- physicians, hospitals, employers, and health insurers, employers were the most trusted, with only 10 percent of participants expressing concern. That went up to 11 percent for physicians, 14 percent for hospitals, and 16 percent for insurers.

Those in the $100,000 a year or more income bracket were more concerned about privacy than others -- 27 percent of them had concerns about their health insurer and 17 percent had concerns about their physician. By contrast, the most trusting group was those 65 or older: only 2 percent worried about their employer and just 12 percent distrusted their insurer.

The level of concern seems to match up with actual cause for concern: when participants were asked whether their medical information had ever been compromised, only 5 percent of the total group said it had, but that included 16 percent of the $100K+ earners and only 1 percent of the Silent Generation members.

Nonetheless, most survey participants were willing to share information anonymously with researchers. Some -- 22 percent -- were even willing to share credit card purchase information and social media information with their doctors if it would improve their health. This number broke down most strongly on generational lines, going up to 30 percent for millennials and down to 15 percent for baby boomers.