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

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 towards users and uses of linked administrative health data held by ICES in Ontario, Canada.

Methods — Eight (8) 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: (i) the need for assurance about privacy and security, (ii) general support for research based on linked administrative health data with some conditions, (iii) mixed and more negative reactions when there is private sector involvement. Two minor themes were also derived from the data, (i) low knowledge and understanding of how linked administrative health data are used for research and (ii) varying opinions about whether patient consent is needed in cases where research datasets don’t include identifying information.

Interpretation — The public generally supports research based on linked administrative health data, but there is no blanket approval. Research and health data holding organizations should engage with members of the public to understand and address their concerns about privacy and security, and to ensure that research is aligned with social licence, particularly where there is private sector involvement.