Social Licence for uses of Health Data: A report on public perspectives

Illustration of a brown woman with dark brown hair pulled back, wearing a white lab coat & stethescope, holding a a report, and standing in front of a large green map of Canada with blue connected lines
Illustrations de Brittany Datchko - Graphic Journeys

About the report

Building on a decade of research into publicly supported uses of health data, Social Licence for Uses of Health Data: A Report on Public Perspectives adds the voices of 20 experienced public and patient advisors to the discussion about what uses and users of health data have “social licence.” “Social licence” describes which uses and users of health data members of the public support - and under what conditions. Through a facilitated deliberative process, participants explored concerns related to privacy, commercial motives, equity and fairness. Despite many disagreements, they reached agreement on some scenarios where health data use has social licence, and certain cases that it did not.

Illustration of a woman with short grey hair, wearing an orange shirt and a smart watch sits beside a brown-skinned man with a beard and grey turban, wearing a blue scrubs top and stethoscope, holding a tablet. A swoosh of data emanates from the screen. Text reads: List of medications. Assessment. Past history. Site of Care. Diagnosis.

Download the report

Learn more about the views of participants, and the process we used to capture them

Illustration of a woman, wearing a smartwatch and a blue cardigan over a gray shirt, sits at a desk with a computer with a black man, wearing a light blue dress shirt, pointing at the computer screen. A swirl of data, represented by 1s and 0s surrounds the two people.

Agreements & disagreements

Our inclusive design allowed us to capture a wide range of views, not just the dominant ones

A woman with long brown hair, wearing a blue cardigan over a light blue shirt and grey pants, holds a clipboard and sits at a desk with a laptop. A swirl of data, represented by 1s and 0s emanates from the screen. Text reads: Electronic medical record de-identified data

Using the findings

What we learned about “social licence” can be a starting point for other data-focused initiatives