JMIR Publications

ABSTRACT

Background:

Patients and publics are generally positive about data-intensive health research, yet conditions for support need to be fulfilled. Confidentiality, security and privacy are pivotal. Secondary use by commercial parties, and risk of data misuse raise concerns amongst patients and the public, leading to a favoring of personal control. The potential for public benefit highlights the importance of trust to attenuate perceptions of harm and risk. Empirical evidence on how conditions for support of data-intensive health research can be operationalized remains scant.

Objective:

To inform efforts to design governance frameworks by gaining insight in the preferences of patients and publics for governance policies and measures.

Methods:

We distributed a digital questionnaire amongst a convenience sample of patients and publics. Data were analyzed using descriptive statistics and nonparametric inferential statistical techniques 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 and provision of information were found highly important, as were health data sharing policies and governance measures pertaining both to strengthening direct personal control and collective governance. Further analysis revealed that participants willing to share health data had a lesser demand for policies strengthening direct personal control than participants that were reluctant to share health data. Overall, policies and measures enforcing conditions for support at the collective level of governance were most strongly favored. Critically, this was the case for participants that explicitly stressed the importance of being able to decide on conditions under which health data can be shared.

Conclusions:

This study revealed that both a positive attitude regarding health data sharing as well as demands for personal abilities to decide on conditions were associated with preference for policies and measures at the collective level of health data research governance. We recommend this type of collective governance policies to be pursued more actively. More importantly, further attention to the trustworthiness of governance policies and measures for data-intensive health research is required.