Consumers are most willing to share their health information when privacy protections are in place, with consent being the most important, followed by data deletion, regulatory oversight and data transparency, according to a conjoint analysis published in JAMA Network Open. 

The 2020 national survey included responses from 3,539 U.S. adults, with an oversampling of Black and Hispanic individuals. It analyzed respondents' willingness to share digital information across 192 scenarios, with each participant randomly assigned nine scenarios presented in the context of diabetes care and reusing data to reduce the risk of diabetes.

Fifty-three percent of respondents were female, 21% identified as Black, and 24% identified as Hispanic. Ultimately, no differences existed between Black and white respondents in their willingness to share health information, while Hispanic respondents were more willing to share their info than non-Hispanic respondents. However, the importance of privacy protection only slightly varied across the subgroups. 

Thirty-three percent of respondents had an annual income of less than $50,000. Ultimately, consent was the most significant factor in willingness to share health information among non-Hispanic respondents and those earning over $100,000. 

Thirty-six percent of respondents were 60 or older, and the survey revealed openness to sharing health data decreased with age. 

Participants' political ideologies were almost evenly split among liberal, moderate and conservative views; however, conservatives were less willing to share their health information.

Respondents were most willing to share their digital health information with the presence of all four privacy protections when university hospitals use the data for research purposes and least willing to share their information with digital technology companies for marketing purposes without the presence of privacy protections.

"A key finding from this study, that many consumers would rather not share their digital health information when privacy protections are lacking but are more willing to share when more comprehensive privacy protections are established, points to the need to update and fill gaps in U.S. privacy law," the survey's authors wrote.

"Given the growing complexities of data sharing, unpredictable future uses of data and the infeasibility of repeatedly acquiring consent for new uses, one approach to protecting consumer privacy is to implement a combination of individualized and early consent with collective and ongoing governance."

WHY IT MATTERS

Researchers noted limitations, including making the central focus diabetes, and not knowing whether respondents had a history of diabetes or cared for someone with the disease.

The findings also reflected a particular moment, July 2020, when digital platform use was increased due to the pandemic. 

Only four privacy protections were included, but other protections not included may be important to consumers. The findings also rely on hypothetical scenarios. Responses may have been different if actual decisions were studied.