Health Data Glossary promotes public trust, transparency
In an effort to build trust in health data and improve data literacy among members of the public, HDRN Canada is developing a health data glossary in collaboration with the Public Health Agency of Canada (PHAC). The goal of the glossary is to standardize terms used to discuss and describe health data to promote common language across a range of users, including researchers, policymakers and the public.
Health data literacy is the ability to read, understand, create and interpret data for the purposes of shared decision-making and includes an understanding of the value of data to the health and well-being of individuals, populations and health systems. “Health data literacy is one of many foundational aspects to earning the public’s trust in health data collection, sharing and use,” explained Julia Burt, operational lead of HDRN Canada’s Public Engagement Working Group. “But in order to create trust, it is essential to have a shared understanding. The glossary will compile terms related to health data and define them in plain language to help create that understanding for the public.”
“Building public trust through trustworthy actions like developing the health data glossary in collaboration with the Public Health Agency of Canada will enhance data quality and access, promote equity, and ultimately enable better health outcomes for Canadians.” ~ Dr. Kim McGrail
This has implications beyond creating a shared language around health data, according to Dr. Kim McGrail, HDRN Canada’s CEO and Scientific Director. “Building public trust through trustworthy actions like developing the health data glossary in collaboration with the Public Health Agency of Canada will enhance data quality and access, promote equity, and ultimately enable better health outcomes for Canadians.”
The health data glossary is part of a broader HDRN Canada-PHAC project that includes creating a guiding document for health data partners and the public about principles of public trust and data literacy, as well as the benefits, risks and protections associated with health data in Canada. This project aligns with the commitments of Working Together to Improve Health Care for Canadians Plan, the Pan-Canadian Health Data Charter and the joint federal, provincial, and territorial Action Plan on Health Data and Digital Health. These initiatives share an overarching mandate to modernize the health system by improving how health data are collected, shared, used and reported to Canadians to promote greater transparency and inform decisions.
The project is now seeking public feedback on the list of terms and associated definitions in the proposed glossary, with a focus on plain language. Public review and commentary is open until February 14, 2025.