Abstract
Consumers routinely generate digital information that reflects on their health. To evaluate the factors associated with consumers' willingness to share their digital health information for research, health care, and commercial uses. This national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample, with oversampling of Black and Hispanic panel members. Participants were randomized to 15 scenarios reflecting use cases for consumer digital information from a total of 324 scenarios. Attributes of the conjoint analysis included 3 uses, 3 users, 9 sources of digital information, and 4 relevant health conditions. The survey was conducted from July 10 to 31, 2020. Participants rated each conjoint profile on a 5-point Likert scale (1-5) measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results reflect mean differences in this scale from a multivariable regression model. Among 6284 potential participants, 3543 (56%) responded. A total of 1862 participants (53%) were female, 759 (21%) identified as Black, 834 (24%) identified as Hispanic, and 1274 (36%) were 60 years or older. In comparison with information from electronic health care records, participants were less willing to share information about their finances (coefficient, -0.56; 95% CI, -0.62 to -0.50), places they visit from public cameras (coefficient, -0.28; 95% CI, -0.33 to -0.22), communication on social media (coefficient, -0.20; 95% CI -0.26 to -0.15), and their search history from internet search engines (coefficient, -0.11; 95% CI, -0.17 to -0.06). They were more willing to share information about their steps from applications on their phone (coefficient, 0.22; 95% CI, 0.17-0.28). Among the conjoint attributes, the source of information (importance weight: 59.1%) was more important than the user (17.3%), use (12.3%), and health condition (11.3%). Four clusters of consumers emerged from the sample with divergent privacy views. While the context of use was important, these 4 groups expressed differences in their overall willingness to share, with 337 participants classified as never share; 1116 classified as averse to sharing (mean rating, 1.64; 95% CI, 1.62-1.65); 1616 classified as uncertain about sharing (mean rating, 2.84; 95% CI, 2.81-2.86); and 474 classified as agreeable to sharing (mean rating, 4.18; 95% CI, 4.16-4.21). Respondents who identified as White and non-Hispanic, had higher income, and were politically conservative were more likely to be in a cluster that was less willing to share (ie, never or averse clusters). These findings suggest that although consumers' willingness to share personal digital information for health purposes is associated with the context of use, many have strong underlying privacy views that affect their willingness to share. New protections may be needed to give consumers confidence to be comfortable sharing their personal information.
Highlights
Twenty-five years ago, the Health Insurance Portability and Accountability Act (HIPAA) of 1996 was signed into law.[1]
In comparison with information from electronic health care records, participants were less willing to share information about their finances, places they visit from public cameras, communication on social media, and their search history from internet search engines
In comparison with health information from personal health care records, participants were less willing to share information about their finances from financial institutions, places they visit from public cameras, communication with other people on social media, and their search history from internet search engines
Summary
Twenty-five years ago, the Health Insurance Portability and Accountability Act (HIPAA) of 1996 was signed into law.[1]. The proliferation of consumer digital data alongside modern data science and an understanding of health’s social determinants has effaced any lines between health and nonhealth information such that most digital data are health data.[3] The result is that the health data generated in the context of clinical care is substantially protected, but information potentially as health-revealing that is collected in other contexts is not. Prior studies have demonstrated that consumers care deeply about health privacy,[4,5,6] views on privacy differ widely based on contextual factors, such as the perceived social benefits of the use, the motive of the user (including if the use is for commercial gain), and the sensitivity of the information itself.[7,8,9] Digital data has many potential health-related applications. There are additional concerns that consumers often cannot turn off the collection of personal data— companies, including search engines and social media sites, can deduce locations of individuals even if users have opted out of sharing location data.[18,19]
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