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

ABSTRACT:

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 h

SUBMITTER: Muller SHA 

PROVIDER: S-EPMC9494211 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature