Futures for Health Research Data Platforms From the Participants’ Perspectives

Abstract

In clinical cohort studies, researchers analyse the life history of population groups to understand the evolution of diseases. Health research data platforms came to facilitate such studies as they allow multiple projects to share access to cohorts' non-identifiable health information. Some latest initiatives are also starting to include mobile-generated data in their research programmes. Although seemly beneficial, it is not yet clear how potential participants feel about contributing to the new platforms: there is a need to investigate potential factors related to the acceptance in this specific context. In this paper, previous works from related contexts were brought together and, along with a qualitative study, composed a participant-centred perspective of enablers and barriers for contribution. We found that there is an apparent misalignment between current implementations and participants' preferences, leading us to propose design guidelines for future developments which can make participation more ethical and engaging.

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

“…Another barrier to participation is that willingness to share data depends strongly on the data type [ 32 , 47 , 67 ], even though there are divergent findings in the literature about which data types people feel most uncomfortable sharing [ 37 , 38 , 42 , 61 - 65 ]. For example, previous studies with young adults have observed a high willingness to donate DNA samples [ 33 , 34 ], but 2 extensive worldwide surveys have observed the opposite [ 36 , 44 ].…”

“…When it comes to access control options, our results show that participants would like to be informed about the different projects which may access their data and customize their consent. Even though granular data control options may reduce privacy concerns [ 84 ], broad consent models are still the most used approach in current health research platforms [ 32 ], which means that once participants provide their consent, they are usually not consulted about data reuse in the future. The conception of digital systems for continuous communication with participants could transform consent practices.…”

“…The instrument development was based on (1) several previous surveys and focus groups about public acceptance of biobanks, electronic health records, and clinical trial repositories [ 43 - 53 ]; (2) a previous qualitative study about enablers and barriers for participation in digital health research repositories [ 32 ]; and (3) the input from the research team, clinicians, statisticians, and participants of the target population (young adults). The instrument went through several iterations until the final version, which is the one available in Multimedia Appendix 1 .…”

“…Participants were also asked how concerned they would feel about the following risks if their data were stored in a health research repository: having their data used for profit without their knowledge, having data used for projects that they perceive as unethical, agreeing with terms and conditions that they do not fully understand, being socially discriminated against because of the information shared, becoming vulnerable to cyberattacks and blackmail, and being asked to provide more data in the future. Such questions about motivations and concerns were based on findings of a qualitative interview study [ 32 ] and previous research on motivations to contribute to research [ 57 ] and concerns related to data sharing in general [ 58 , 59 ]. The order of the answer options was randomized for each respondent to avoid order bias.…”

“…Furthermore, a potential lack of acceptance is aggravated by ethical debates questioning which rights individuals should have following contribution of their data [ 28 - 30 ], especially if data are shared beyond a specific project’s scope. Given such challenges, previous research has emphasized that in contrast to most current initiatives, which mainly cater to researchers’ needs, health data repositories should attend more to participants’ preferences to identify enablers for participation [ 31 , 32 ].…”