Using the findings
Social Licence for Uses of Health Data: A Report on Public Perspectives was funded by the Public Health Agency of Canada to inform the Pan-Canadian Health Data Strategy. (see this presentation by Prof. Kim McGrail to the Expert Advisory Group for the Pan-Canadian Health Data Strategy). Participants’ contributions may offer a new way of thinking about how and where to focus future initiatives related to expanding uses and users of health data.
Instead of making broad changes to health data access policies, this report suggests that there are subsets of publicly-acceptable uses of health data that would be a better starting point. There are many public benefits that could be realized just by focusing on the three uses that participants of this project perceived as being within social licence: better patient care, better health system planning, and better understanding of disease and wellness. These and other benefits could be realized if there is a concerted and continuous effort to identify and act on increasing the health data uses that members of the public support.