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

Abstract

ImportanceDigital 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.ObjectiveTo 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 ParticipantsThis 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 MeasuresParticipants 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.ResultsOf 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 RelevanceIn 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.

Variations in Pattern of Social Media Engagement between Individuals with Chronic Conditions and Mental Health Conditions

“…The results showed that the frequency of social media use by adults is consistent with several other studies [30,31]. A much smaller proportion (14%) used the internet to share health information on social networking sites, and this supports the finding of a nationally representative study of U.S. adults that people have reservations about sharing health information electronically unless their privacy protection and confidentiality are assured, which social media cannot completely assure at all times since there can be security breaches [32]. The use of YouTube for watching health-related videos in less than 50% of the population points to the existence of opportunities for stakeholders to consider.…”

The Genetic Information Privacy Act

“…Although these changes may seem transformative, they miss the mark on robust protections. Having transparent privacy practices and seeking robust consent for the sharing of data are clearly an unalloyed good . However, the paradigm of consumer education and consent rests on notions of privacy self-management in that consumers are expected to understand (through company disclosures) how their data are collected and shared and then make informed choices about whether to participate in the service.…”

“…Misunderstandings of health data protections are even worse. Only 18% of people were aware that health-related apps are not barred from selling collected data to third parties …”

Medical journals and advertiser tracking—Consequences for patients, clinicians, and editors

“…18 In Europe, the General Data Protection Regulation (GDPR), which protects online personal data by informing users of cookies and restricting data collection and use through the levying of penalties, has similarly faced enforcement challenges due to evasion and budgetary constraints. 19 Though GDPR tightened consent rules, consent alone may be insufficient, 20 as users may frequently click through complicated consent banners online and be unaware of profile construction. One issue in particular has been the growing consolidation among firms that engage in third-party tracking.…”