The ICES study sets out to learn more about the public’s views on uses and users of personal health data. Research participants were presented with background information about administrative data and the Ontario non-profit research institute, ICES. They were asked to talk about examples of research studies based on ICES data. The researchers identified three major themes:
- The need for assurance about privacy and security;
- General support for research based on linked administrative health data with some conditions; and
- Mixed and more negative reaction when there is private sector involvement.
The researchers also found there was a low understanding of how administrative health data is used in research. Many participants were unaware that each time someone has an interaction with Ontario’s healthcare system, data is generated and collected to manage, administer and pay for services. ICES proposes health data holding organizations should engage with the public to understand and address concerns about privacy and security, and ensure research is aligned with social license, especially if there's private sector involvement.
Related:
'No blanket approval' to use personal health data in research, focus groups say - CBC