IJPDS International Journal of Population Data Science

Multiple research studies have analysed how patients and members of the public perceive various uses of health data. This research into “health data social licence” consistently shows that many patients and members of the public want health data to be used for public benefit, but only if concerns like those related to privacy, cybersecurity, commercial motives, and misuse of data are addressed.

Our recent study published in the International Journal of Population Data Science (IJPDS) sought to complement prior research by posing a different question to 20 experienced public and patient advisors. Instead of asking participants what they thought about specific potential uses of health data, we asked, “Are there any uses and users of health data that all participants support or oppose?”

Inspired by Jutta Treviranus’ work on inclusive design, we did not use voting to narrow down options during our process because voting can suppress views that are held by a minority of participants. Additionally, all participants had the opportunity to veto decisions that, in other circumstances, would have been made based on majority rules.

After hours of discussion, participants agreed it is within social licence for:

• Health-care practitioners to use health data to directly improve the health-care decisions and services provided to a patient
• Governments, health-care facilities, and health-system administrators to use health data to understand and improve health care and the health-care system
• University-based researchers to use health data to understand the drivers of disease and well-being.

Participants unanimously opposed two uses of health data:

• It is not within social licence for an individual or organisation to sell (or re-sell) another person’s identified health data
• It is not within social licence for health data to be used for a purpose that has no patient, public or societal benefit.

Though some participants perceived potential benefits when companies use health data, there was no consensus support for private sector uses of health data because, among other concerns, some participants were concerned that companies would put profit ahead of public benefit.

Overall, the findings from our work suggest that any expansive plan to increase uses of health data is likely to be met with opposition from some people. However, inclusive processes that invite dissenting views may help policymakers identify and focus on the subset of uses of health data that patients and members of the public agree with.

We hope that the inclusive process described in our article will be adapted and used by others as part of a concerted and continuous effort to increase the uses of health data that members of the public support.

 

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Alison Paprica, Senior Fellow and Professor (adjunct), Institute for Health Policy, Management and Evaluation, University of Toronto, and Julia Burt, Public Engagement Operational Lead, Health Data Research Network Canada (HDRN Canada)

Burt, J., Cumyn, A., Dault, R., Belzile, L., Binder, L., Carter, C., Carter, P., Cho, B., Dallaire, C., Gaudreau, A., L'Hérault, F., McKinnon, A., Remy, D., Stephenson, L., Yip, C. and Paprica, P. A. (2024) “Health data social licence: An inclusive process to learn more about the perspectives of experienced public and patient advisors”, International Journal of Population Data Science, 9(1). doi: 10.23889/ijpds.v9i1.2375.