Survey: Privacy protections increase consumers’ willingness to share health data

Consumers are more 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, analysis finds spouse Posted in Open JAMA Network.

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

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

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

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

Participants’ political ideologies were almost evenly split between liberal, moderate, and conservative views; however, curators were less willing to share their health information.

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

“A key finding of this study is that many consumers prefer not to share their digital health information when privacy protections are lacking, but are more willing to share when more comprehensive privacy protections are in place. , underscores the need to update and close loopholes in U.S. privacy law,” the survey authors wrote.

“Given the increasing complexity of data sharing, the unpredictable future uses of data, and the inability to repeatedly obtain 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.”


The researchers noted limitations, including focusing on diabetes and not knowing whether respondents had a history of diabetes or were caring for someone with the disease.

The results also reflect a particular moment, July 2020, when the use of digital platforms increased due to the pandemic.

Only four privacy protections have been included, but other protections not included may be important to consumers. The results are also based on what-if scenarios. The answers might have been different if the actual decisions had been studied.

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