Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information

Importance: Digital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy. Objective: To determine whether different privacy protections are associated with consumers' willingness to share their digital health information for research, marketing, or clinical uses. Design, Setting, and Participants: This 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022. Main Outcomes and Measures: Participants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences. Results: Of the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P <.001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P <.001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P <.001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P <.001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%). Conclusions and Relevance: In this survey study of a nationally representative sample of US adults, consumers' willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information..