Public Advisory Council launches plain language health data glossary
HDRN Canada’s Public Advisory Council has written a plain language health data glossary to help people wade through the avalanche of health data information—and disinformation—now accessible through the click of a mouse.
“Thanks to the internet and AI in particular, we can access information about our health more quickly, more easily and in larger amounts than ever before,” said Claire Bertran, a member of HDRN Canada’s Public Advisory Council (PAC). “But there’s a dark underbelly to this era of ‘big data’ and AI. Health data can be used in misleading and wrong ways, which can be harmful or even dangerous. We wanted to create a tool to help people develop health data literacy skills and empower them to actively participate in decision-making about their health.”
We wanted to reflect on the challenges and opportunities people living in Canada face in understanding and using their health care data as well as how their data are handled by health care providers, researchers, and the broader health system. ~ Bill Pratt
Understanding how health data are used, managed, stored and protected is a critical skill that can improve the well-being of individuals, families and communities. Yet these advantages depend on strong health data literacy skills, and Canada is falling short according to a recent survey from the Public Health Agency of Canada. “Only 10 percent of Canadians report being familiar with the term ‘health data’ and 31 percent feel uncomfortable or unwilling to share theirs,” said Julia Burt, Public Engagement Operational Lead for HDRN Canada.
She added that while health literacy and health data literacy are related, they are not the same, likening their relationship to building a house: “Without a solid health literacy foundation, people may struggle to understand prescription labels or know how to navigate the complex health care system,” she said. “Health data literacy forms the first floor, enabling people to have more informed conversations and a deeper understanding of health data. It also enables people to interpret information in multiple formats, spot misuse, manage relevant health data assets, and make informed personal and public health decisions.”
According to Burt, countries like the United Kingdom have developed comprehensive plain language health data tools, but there aren’t a lot of resources available in the Canadian context. That’s why HDRN Canada’s PAC decided to develop the Plain Language Health Data Glossary. Drawing on expertise and lived experience, PAC members from across the country researched and selected each definition, pairing it with a real-life example. “We wanted to reflect on the challenges and opportunities people living in Canada face in understanding and using their health care data as well as how their data are handled by health care providers, researchers and the broader health system,” explained Bill Pratt, PAC chair.
Alvina Nadeem, another member of HDRN Canada’s PAC, said a plain language approach can have a positive impact on health data literacy. “We wrote the glossary in plain language so that young people can use it and start building their health data literacy earlier,” she noted, adding that incorporating health literacy/health data literacy into the school curriculum has been recommended by the Expert Advisory Group of the Pan-Canadian Health Data Strategy. “But the glossary was designed to be a useful tool for people of all ages to better understand how their health data are collected, used and protected.”