IJPDS International Journal of Population Data Science

Data are generated everywhere, all the time, and can be used to help us understand our world. Health data are particularly powerful tools, with the potential both to help and to stigmatise or marginalise groups. Understanding public views about how health data should be used is critical because the data are about people, they are often collected without direct consent, and trust is essential for effective functioning of health care and other systems.

One way to understand public views is through a process called “public deliberation”. Researchers at the University of British Columbia conducted a public deliberation on health data in British Columbia, Canada (BC). The idea behind a public deliberation is that a diverse group of citizens comes together to give informed input, through a carefully structured process, on issues that are controversial or a source of public concern. The goal is for participants, working together, to make recommendations for policies that are consistent with their varied perspectives.

The public deliberation took place over four days and included 25-30 people who were recruited at random and chosen to be diverse in age, gender, race, ethnicity, immigration status, income, and rural vs. urban residence. They were given background information in order to engage in discussions around four specific questions:

1. Under what conditions is it acceptable to use data from electronic medical records for research?
2. Under what conditions is it acceptable to combine private sector and public sector data for research?
3. Who needs to authorise research that combines public and private data?
4. What are important features of an ongoing citizen advisory for decisions about data-based research in BC?

 

With the help of a facilitator, the participants produced 17 conclusions for consideration by policy-makers. Their recommendations, published in the International Journal of Population Data Science (IJPDS), covered four broad areas:

• 1) Balancing benefits and potential harms when linking data (e.g. the potential for discrimination must be mitigated);
• 2) Expected protections (e.g. there should be a review of the requested use of data);
• 3) Required authorisation (e.g. informed consent should be considered when using genetic data); and
• 4) Ongoing public involvement (e.g. there should be ongoing public involvement of a diverse group of people in BC).

Lead author Professor Kim McGrail said, “While health data use is sometimes viewed as contentious, public input can help design data sharing processes that are safe, trustworthy, and acceptable to the people those data represent.”

 

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Professor Kim McGrail, Centre for Health Services and Policy Research, University of British Columbia, Vancouver, British Columbia, Canada and School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, Canada

McGrail, K., Teng, J., Bentley, C., O'Doherty, K. and Burgess, M. (2024) “Research data use in a digital society: a deliberative public engagement”, International Journal of Population Data Science, 9(1). doi: 10.23889/ijpds.v9i1.2372.