HDRN Canada’s joint work on social licence wins best poster at IPDLN
HDRN Canada took home the prize for best poster at the 2024 International Population Data Linkage Network (IPDLN) conference in Chicago for its collaboration with Public Health Research Network Australia on social licence for uses of health data. The poster showcases community attitudes on how health data are used in Canada and Australia based on research done by each organization as well as online public workshops co-hosted in each country.
“This recognition demonstrates the importance of our work on health data social licence, highlighting how community attitudes towards health data use vary depending on many contextual factors,” explained Julia Burt, HDRN Canada Public Engagement Lead. “It’s also a testament to the impactful efforts of HDRN Canada and PHRN Australia in this area of research.”
Through this work, we can identify innovative ways to continuously monitor health data social licence, keeping our finger on the pulse for better understanding community attitudes towards health data use. ~ Julia Burt
Social licence is a term that describes which uses and users of health data the public will support, and under what conditions. Research conducted by HDRN Canada and funded by the Public Health Agency of Canada suggests that people support health data being used for public benefit in instances where various concerns related to privacy, equity and fairness are addressed.
The project expanded on the existing body of research into social licence for uses of health data through the incorporation of public and patient perspectives. Through a process of facilitated deliberation, 20 participants reached agreement on where health data use has social licence and certain cases where it did not. After hours of facilitated discussion and weeks of reflection, all 20 participants agreed that it was within social licence for health data to be used by health care practitioners to directly improve health decisions and services. They also agreed that governments, health care facilities and health system administrators could use health data to understand and improve health care. Finally, they agreed that university-based researchers can use health data to understand drivers of disease and wellbeing.
Despite many disagreements, all participants agreed that it was not within social licence to sell a person’s identified health data, nor to use health data for a purpose that does not benefit the patient or public. “By examining diverse perspectives towards health data use, we were able to contribute new ways of thinking about how and where to focus future health data initiatives that are supported by the public,” she said.
After the release of the final report, Social Licence for Uses of Health Data, HDRN Canada became engaged in a collaborative initiative with PHRN Australia, an organization which had conducted its own research to better understand community attitudes on the use of health data in research in Australia. “Both HDRN Canada and PHRN Australia are dedicated to advancing multi-regional health research,” said Dr. Kim McGrail, CEO and Scientific Director of HDRN Canada. “Our collaboration with PHRN Australia represents an exciting cross-cultural learning opportunity to advance the research available on social licence internationally.”
The initiative involved an analysis of the engagement methods, experiences and findings of each research project, highlighting emerging issues and lessons learned in the Canadian and Australian context. The comparative exercise was enhanced through online workshops co-hosted in each country, inviting feedback from the public on research findings in an interactive setting.“Through this work, we can identify innovative ways to continuously monitor health data social licence, keeping our finger on the pulse for better understanding community attitudes towards health data use,” Julia explained.
After being selected for a poster prize at IPDLN over 46 other entrants, and conducting a conference session to solicit further feedback, the project team will move forward with sharing the results of their joint work through a publication. “We aim to build on themes emerging from this work, including the importance of data literacy and public trust,” Julia said. “We’re also hoping to explore opportunities for collaboration with other organizations and countries with the hope of expanding the conversation on health data social licence globally.”