JMIR Publications

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, which is challenging.

Objective:

This study investigates public attitudes towards possibly contributing to digital health research repositories in order 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. Recruitment targetted young adults in Denmark and Brazil. 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 analysis of 1600 responses from 583 participants in Denmark and 1017 in Brazil shows a vast majority very motivated by helping future patients (1366/1600, 85.37%), helping researchers (1253/1600, 78.31%), and receiving results about themselves (1170/1600, 73.12%), yet very concerned about unethical projects (1219/1600, 76.18%), profit-making without consent (1096/1600, 68.5%) and cyber-attacks (1055/1600, 65.93%). Participants’ willingness to share data is lower when it comes to sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.37%), in contrast to more traditional health research information, but those uncomfortable sharing data about mental illness worry about being discriminated against (OR 2.26, 95%CI, 1.66-3.07, P<.001). Only 13.43% (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, 83.37%) and control future data access (1181/1600, 73.81%). Findings indicate that favorable attitudes towards digital health research repositories are related to personal interest in health topics (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 so that personalized medicine's potential benefits can be fairly distributed.