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 $50 000, 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.

Consumer Willingness to Share Personal Digital Information for Health-Related Uses.

Importance: Consumers routinely generate digital information that reflects on their health. Objective: To evaluate the factors associated with consumers' willingness to share their digital health information for research, health care, and commercial uses. Design, Setting, and Participants: 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. Main Outcomes and Measures: 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. Results: 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). Conclusions and Relevance: 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.

Willingness to Travel for Cellular Therapy: The Influence of Follow-Up Care Location, Oncologist Continuity, and Race.

PURPOSE: Patients weigh competing priorities when deciding whether to travel to a cellular therapy center for treatment. We conducted a choice-based conjoint analysis to determine the relative value they place on clinical factors, oncologist continuity, and travel time under different post-treatment follow-up arrangements. We also evaluated for differences in preferences by sociodemographic factors. METHODS: We administered a survey in which patients with diffuse large B-cell lymphoma selected treatment plans between pairs of hypothetical options that varied in travel time, follow-up arrangement, oncologist continuity, 2-year overall survival, and intensive care unit admission rate. We determined importance weights (which represent attributes' value to participants) using generalized estimating equations. RESULTS: Three hundred and two patients (62%) responded. When all follow-up care was at the center providing treatment, plans requiring longer travel times were less attractive (v 30 minutes, importance weights [95% CI] of -0.54 [-0.80 to -0.27], -0.57 [-0.84 to -0.29], and -0.17 [-0.49 to 0.14] for 60, 90, and 120 minutes). However, the negative impact of travel on treatment plan choice was mitigated by offering shared follow-up (importance weights [95% CI] of 0.63 [0.33 to 0.93], 0.32 [0.08 to 0.57], and 0.26 [0.04 to 0.47] at 60, 90, and 120 minutes). Black participants were less likely to choose plans requiring longer travel, regardless of follow-up arrangement, as indicated by lower value importance weights for longer travel times. CONCLUSION: Reducing travel burden through shared follow-up may increase patients' willingness to travel to receive cellular therapies, but additional measures are required to facilitate equitable access.