What do members of the general public think about how their personal health data are being used for research? A new ICES study published recently in CMAJ Open set out to learn more about the public’s views on uses and users of personal health data.

“Both international research and news headlines tell us that the public cares about how their health data are used, so ICES wanted to learn more about what the Ontario public thinks about research studies that can be performed with data at ICES,” says Alison Paprica, lead author of the study published today in CMAJ Open.

ICES researchers conducted eight focus groups with a total of 65 people from Toronto, Sudbury and Thunder Bay in 2015 and 2017. In each focus group the participants were presented with background information about administrative data and ICES, and then asked to talk about specific 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
• Mixed and more negative reaction when there is private sector involvement

The researchers also found that there was a low understanding of how administrative health data is used in research. Many participants were not aware that each time someone has an interaction with Ontario’s health care system, like a doctor’s visit or a lab test, a piece of information, or administrative data, is generated and collected in order to manage, administer and pay for services. Organizations like ICES have the authority to bring the data together, link it and remove or code identifying information, then use the data for research studies.

Since 1992, ICES — an independent not-for-profit research institute — has been the steward of a powerful repository of health care data with information from nearly 14 million people. These data can be linked together with community and social data to understand how the Ontario health system is performing. ICES researchers use it to study the health system, and then health officials use the findings to deliver better health care. ICES carefully protects the privacy and security of these data, which is overseen by Ontario’s Information and Privacy Commissioner.

“The members of the public we heard from see data as an asset to be used, and generally support 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,” adds Paprica.

The article “Social licence and the general public’s attitudes toward research based on linked administrative health data, a qualitative study,” was published in the February 4, 2019 issue of CMAJ Open.