Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey

Abstract

Background Digital health research repositories propose sharing longitudinal streams of health records and personal sensing data between multiple projects and researchers. Motivated by the prospect of personalizing patient care (precision medicine), these initiatives demand broad public acceptance and large numbers of data contributors, both of which are challenging. Objective This study investigates public attitudes toward possibly contributing to digital health research repositories to identify factors for their acceptance and to inform future developments. Methods A cross-sectional online survey was conducted from March 2020 to December 2020. Because of the funded project scope and a multicenter collaboration, study recruitment targeted young adults in Denmark and Brazil, allowing an analysis of the differences between 2 very contrasting national contexts. Through closed-ended questions, the survey examined participants’ willingness to share different data types, data access preferences, reasons for concern, and motivations to contribute. The survey also collected information about participants’ demographics, level of interest in health topics, previous participation in health research, awareness of examples of existing research data repositories, and current attitudes about digital health research repositories. Data analysis consisted of descriptive frequency measures and statistical inferences (bivariate associations and logistic regressions). Results The sample comprises 1017 respondents living in Brazil (1017/1600, 63.56%) and 583 in Denmark (583/1600, 36.44%). The demographics do not differ substantially between participants of these countries. The majority is aged between 18 and 27 years (933/1600, 58.31%), is highly educated (992/1600, 62.00%), uses smartphones (1562/1600, 97.63%), and is in good health (1407/1600, 87.94%). The analysis shows a vast majority were very motivated by helping future patients (1366/1600, 85.38%) and researchers (1253/1600, 78.31%), yet very concerned about unethical projects (1219/1600, 76.19%), profit making without consent (1096/1600, 68.50%), and cyberattacks (1055/1600, 65.94%). Participants’ willingness to share data is lower when sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.38%), in contrast to more traditional health research information. Only 13.44% (215/1600) find it desirable to grant data access to private companies, and most would like to stay informed about which projects use their data (1334/1600, 83.38%) and control future data access (1181/1600, 73.81%). Findings indicate that favorable attitudes toward digital health research repositories are related to a personal interest in health topics (odds ratio [OR] 1.49, 95% CI 1.10-2.02; P=.01), previous participation in health research studies (OR 1.70, 95% CI 1.24-2.35; P=.001), and awareness of examples of research repositories (OR 2.78, 95% CI 1.83-4.38; P<.001). Conclusions This study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate.

Public and Patients’ Perspectives Towards Data and Sample Sharing for Research: An Overview of Empirical Findings

“…Some empirical studies after that date retrieved by our search posed similar questions and reached conclusions similar to those of older studies. These conclusions included the same themes seen in the reviews, i.e., trust (including conditional trust and transparency), privacy, active engagement of participants, dynamic processes (featuring the possibility of choices over time), education and the raising of awareness regarding the benefits of research (Antommaria et al, 2018;Ballard et al, 2020;Barazzetti et al, 2020;Barnes et al, 2020;Carson et al, 2019;Meka et al, 2021;Nunes Vilaza et al, 2021), not to mention the lack of differences in attitudes between people with mental disorders and those without (Sundby et al, 2018). Remarkably, one study found differences between a pre-pandemic cohort and a pandemic cohort regarding data-sharing willingness, showing that dynamic processes would positively influence engagement and trust (Tosoni et al, 2022).…”

A Scoping Review on Analysis of the Barriers and Support Factors of Open Data

“…Risks and benefits of data sharing must, therefore, be carefully weighed [10,23,49], and it is unclear whether specific datasets can be ethically released [10]. There is also concern about subsequent unethical and inappropriate projects in secondary use with a risk to privacy [30,36,50]. Ethical issues are mainly seen in further health data exchange [46].…”

“…Even when personal data are collected and used with good intentions, there can be no guarantees for their future use [29]. Possible data breaches, unauthorized data access, malicious attacks, or illegal data sales raise further cybersecurity concerns [29,33,50,59]. Healthcare facilities, in particular, are increasingly identified as attractive targets for hackers [49].…”

“…Dynamic consents as a potential solution pose their own challenges, including the potential under-representation of minorities through this process [18] and the need for ongoing contact with data contributors, which can be highly resource-intensive [1,27]. Another barrier is understanding and assessing consent agreements [6,7,50]. Consent forms are sometimes misunderstood [50], and consents are misinterpreted and evaluated incorrectly [6,7].…”

Measuring the willingness to share personal health information: a systematic review

“…For this reason, digital health and health-data management have become a priority, firmly embedded in EU policy and funding goals (18). However, even if PHI represents an inalienable resource, personal preference in disclosing such information may limit access to PHI (8,(19)(20)(21)(22)(23)(24)(25). During the coronavirus disease 2019 (COVID-19) pandemic, the usefulness of sharing PHI was observed: PHI has been fundamental for contact tracing, managing the vaccination campaign, and other public health interventions (26,27).…”