Social licence and the general public's attitudes toward research based on linked administrative health data: a qualitative study.

ABSTRACT: BACKGROUND:Both the research literature and headline news stories indicate that the public cares about how their health data are used. The objective of this study was to learn more about the general public's attitudes toward users and uses of linked administrative health data held by ICES in Ontario, Canada. METHODS:Eight focus groups, with a total of 65 members of the general public, were conducted in urban and northern settings in Ontario, Canada, in 2015 and 2017 using qualitative market research panels established by a market research/public opinion research firm. RESULTS:Three major themes emerged: (a) the need for assurance about privacy and security, (b) general support for research based on linked administrative health data with some conditions and (c) mixed and more negative react

SUBMITTER: Paprica PA 

PROVIDER: S-EPMC6375226 | biostudies-literature | 2019 Jan-Mar

REPOSITORIES: biostudies-literature