Health data is essential

The intricacies around collecting health data is nothing new to Canada’s medical communities, but the intensity on the subject has shifted since COVID-19.

More than ever before, the pandemic has highlighted gaps accessing, compiling and understanding health metrics, which has hindered Canada’s ability to respond to the virus in a timely manner.

In an effort to find a solution forward, health professionals across the country gathered virtually to discuss the future of health data at the Royal Society of Canada’s latest conference. Leaders in the health-care space, including Waterloo’s President and Vice-Chancellor Vivek Goel, motivated calls for more organized and accessible forms of gathering and sharing health data across the country. 

“I think if we went to people and said: ‘Would you rather continue to have lockdowns, or would you be prepared to share some of your information in order to prevent lockdowns?’ The vast majority of Canadians would probably go with the latter,” Goel said. “We need to move our policy framework to a modern, digital era.”

Drawing from his expertise as a public health expert and member of the Expert Advisory Group on the Pan-Canadian Data Strategy, Goel emphasized the importance of instilling practical approaches to address systemic barriers currently working against health data, ones keeping Canadians from accessing better health-care outcomes.

“These challenges that we had with data during COVID-19 were not new challenges — we’ve known about them for decades,” Goel said. “In Canada, we’ve been doing a lot for sequencing, but we’ve had challenges in sharing that data and making it available at local, national and global levels. In the absence of this data, we’re left with taking blanket measures like province-wide lockdowns without really understanding which populations are being affected the most.”

Stewardship versus data custodianship

During COVID-19, difficulties around data gathering and sharing related to individual cases, sites of outbreaks and tracking vaccinations had an adverse effect on responding to the pandemic in a timely manner. From these experiences, health professionals like Goel are advocating for a simpler, more collaborative approach, one that recognizes the concept of stewardship versus data custodianship.

“Stewardship is about ensuring we use the data to improve people’s lives … whereas custodianship is mandated to protect health data,” Goel said. “Instead, let’s build into the framework that custodians are stewards of data, where they have a responsibility to protect privacy, but also a responsibility to ensure its use for the greater good.”

While Goel notes the solution isn’t one that’s expected to happen overnight, it’s a practical example that could position Canada as a leader in health-data stewardship going forward.

“It’s going to be a lot of hard work, and it’s going to take leadership and will,” Goel said. “But I hope that coming out of the pandemic, with the attention of people like we have at this conference today, we’ll have the motivation to get there.”