Health data can include information about health-care services, health status and behaviours, medications and genetic data, in addition to demographic information like age, education and neighbourhood.
These facts and statistics are valuable because they offer insights and information about population health and well-being. However, they can also be sensitive, and there are legitimate public concerns about how these data are used, and by whom. The term “social licence” describes uses of health data that have public support.
Studies performed in Canada, the United Kingdom and internationally have all found public support and social license for uses of health data that produce public benefits.
However, this support is conditional. Public concerns related to privacy, commercial motives, equity and fairness must be addressed.
Our team of health policy researchers set out to build upon prior studies with actionable advice from a group of 20 experienced public and patient advisers. Studies have shown that health data use, sharing and reuse is a complex topic. So we recruited people who already had some knowledge of potential uses of health data through their roles advising research institutions, hospitals, community organizations and governments.
We asked these experienced advisers to exchange views about uses of health data that they supported or opposed. We also gathered participants’ views about requirements for social licence, such as privacy, security and transparency.
After hours of facilitated discussion and weeks of reflection, all 20 participants agreed on some applications and uses of health data that are within social licence, and some that are not.
Participants agreed it is within social license for health data to be used by:
health-care practitioners — to directly improve the health-care decisions and services provided to a patient.
governments, health-care facilities and health-system administrators — to understand and improve health care and the health-care system.
university-based researchers — to understand the drivers of disease and well-being.
Participants agreed that it is not within social license for:
an individual or organization to sell (or re-sell) another person’s identified health data.
health data to be used for a purpose that has no patient, public or societal benefit.
Points of disagreement
Among other topics, the participants discussed uses of health data about systemically marginalized populations and companies using health data. Though some participants saw benefits from both practices, there was no consensus support for either.
For example, participants were concerned that vulnerable populations could be exploited, and that companies would put profit ahead of public benefits. Participants also worried that if harms were done by companies or to marginalized populations, they could not be “undone.” Several participants expressed skepticism about whether risks could be managed, even if additional safeguards are in place.
The participants also had different views about what constitutes an essential requirement for social licence. This included discussions about benefits, governance, patient consent and involvement, equity, privacy and transparency.
Collectively, they generated a list of 85 essential requirements, but 38 of those requirements were only seen as essential by one person. There were also cases where some participants actively opposed a requirement that another participant thought was essential.
Using the findings
This work was funded by the Public Health Agency of Canada to inform the Pan-Canadian Health Data Strategy. In parallel, an expert advisory group for the strategy recommended that one or more public assemblies be established to provide advice and guidance.
We strongly agree with the expert advisory group’s recommendation to “give voice to people” as the Pan-Canadian Health Data Strategy is implemented.
The findings from our work may help focus the work of the Pan-Canadian Health Data Strategy and other initiatives aimed at expanding uses of health data. These initiatives should start by focusing on uses of health data that have clear public support.
We note that there could be many important benefits just from the users of health data that the 20 participants in our project supported: health-care practitioners; governments, health-care facilities and health system administrators; and university-based researchers. These benefits include better patient care, better health system planning, and better understanding of disease and wellness.
Our hope is that the work described in this article will be a step forward in a concerted and continuous effort to identify and act on increasing the uses of health data that members of the public support.