Patients’ and Publics’ Preferences for Data-Intensive Health Research Governance: Survey Study

• Published in: JMIR human factors 2022-09, Vol.9 (3), p.e36797-e36797
• Main Authors: Muller, Sam H A, van Thiel, Ghislaine J M W, Vrana, Marilena, Mostert, Menno, van Delden, Johannes J M
• Format: Article
• Language: English
• Subjects: Ethics; Heart; Human subjects; Information sharing; Informed consent; Medical research; Original Paper; Participation; Patients; Personal health; Questionnaires; Social networks; Variables
• ISSN: 2292-9495; 2292-9495
• DOI: 10.2196/36797

Background: Patients and publics are generally positive about data-intensive health research. However, conditions need to be fulfilled for their support. Ensuring confidentiality, security, and privacy of patients’ health data is pivotal. Patients and publics have concerns about secondary use of data by commercial parties and the risk of data misuse, reasons for which they favor personal control of their data. Yet, the potential of public benefit highlights the potential of building trust to attenuate these perceptions of harm and risk. Nevertheless, empirical evidence on how conditions for support of data-intensive health research can be operationalized to that end remains scant. Objective: This study aims to inform efforts to design governance frameworks for data-intensive health research, by gaining insight into the preferences of patients and publics for governance policies and measures. Methods: We distributed a digital questionnaire among a purposive sample of patients and publics. Data were analyzed using descriptive statistics and nonparametric inferential statistics to compare group differences and explore associations between policy preferences. Results: Study participants (N=987) strongly favored sharing their health data for scientific health research. Personal decision-making about which research projects health data are shared with (346/980, 35.3%), which researchers/organizations can have access (380/978, 38.9%), and the provision of information (458/981, 46.7%) were found highly important. Health data–sharing policies strengthening direct personal control, like being able to decide under which conditions health data are shared (538/969, 55.5%), were found highly important. Policies strengthening collective governance, like reliability checks (805/967, 83.2%) and security safeguards (787/976, 80.6%), were also found highly important. Further analysis revealed that participants willing to share health data, to a lesser extent, demanded policies strengthening direct personal control than participants who were reluctant to share health data. This was the case for the option to have health data deleted at any time (P