On Tuesday, April 23rd, 2019, Kim McGrail, our Data Director, represented a pan-Canadian research team (as the principal investigator, or PI) for the launch of a new Canada-wide data platform, funded by CIHR under the Strategy for Patient Oriented Research (see our photo album here).
The announcement of this $81 million pan-Canadian initiative was made by the Honourable Ginette Petitpas Taylor, federal Minister of Health, at UBC’s School of Population and Public Health in Vancouver (read the official government news release here).
Whereas health problems have never been limited to provincial or territorial boundaries, any solutions to these problems currently require researchers to apply to get information in many separate geographic areas in an un-unified, un-streamlined way.
As explained in a provided project summary: “Many of the elements required for a world-class health data platform already exist in Canada, but they operate within jurisdictional boundaries rather than spanning across them.”
The Canadian Data Platform offers a new solution for health researchers. This platform will make access and analysis of health research data easier for researchers across the country by putting access requests for the needed information in a single point of access, instead of navigating multiple provincial jurisdictions. A simplified process will then create new opportunities for researchers, which will in turn create new evidence to inform improvements in the delivery of health care.
“The Strategy for Patient-Oriented Research Canadian Data Platform will empower our researchers to work with data from all parts of Canada.”
– Prof. Santa J. Ono,
President and Vice-Chancellor,
University of British Columbia
“This is a game changer for Canada,” said Kim (who is also a professor at the UBC School of Population and Public Health) at the announcement. “Data are as fundamental to research and improvement as the internet is to communications. Analyzing data from across the country can lead to insights that would be impossible if limited to a single province.”
While the announcement was made just a few weeks ago, the research team has been working to build this platform for a much longer time.
In 2018, the Canadian Institutes of Health Research (CIHR) issued a funding opportunity; Kim and a team from across Canada collectively responded to the call.
“Our team, however, has been working together to develop a vision…for almost five years,” she noted in an interview. “There’s enormous opportunity for research that crosses provincial and territorial boundaries, but it’s really difficult to do right now, and we wanted to address that.”
The April 23rd event was held to announce the project, its sources of funding and inform partners of the work already done.
Kim is not a newcomer to the idea of a unified health data platform. She’s already been involved in increasing research access to health data through BC AHSN’s patient-oriented research arm, the BC SUPPORT Unit, and its investments in data and related services.
The SUPPORT Unit’s investments and data partners are moving BC to the forefront of health data in the country. Members of the group have collaborated to launch tools and resources for BC researchers including REDCap, BC Data Scout, Data Prospector BC, newly-available patient-reported experience data and more. The Canadian Data Platform will build on the work being done in BC.
“This Canadian Data Platform will leverage the investments already made by the BC SUPPORT Unit’s provincial platform,” Kim noted. “As well, our work on the SPOR Canadian Data Platform will enhance all of the investments made both in existing data centres and provincial SUPPORT Unit data platforms, all of which are represented in our research team.”
“This is a game changer for Canada.”
– Kim McGrail, BC AHSN Data Director
While much has been made about the announcement of funding, readers may be asking how the research team will begin to implement this massive undertaking, and how the SPOR Canadian Data Platform will actually look.
Citing work that the research team has already done, Kim has an answer.
“This is a seven-year grant, so we’ll be working on a longer-term vision,” she said. “We’re a distributed network, and the platform itself will largely be virtual.”
“We’re already working on adding services and supports to aid researchers,” she continued. “This includes tools for data access and development of algorithms and harmonized data to ensure that variables or measures can be compared from one jurisdiction to another.”
According to the project summary, the platform “will create new capabilities and a single-point-of-access portal connecting provincial and pan-Canadian data, including the longitudinal data that in some cases goes back 20 years or more.”
In addition to government representatives, the April announcement was attended by media outlets such as the Globe and Mail and CTV. Coverage of the announcement appeared in outlets such as Sing Tao, The Canadian Press, and The Hill Times and regional newspapers such as the Times Colonist, Westerly News, Smithers Interior News and the Terrace Standard.
Our CEO, Tom Noseworthy, was also invited to join a meeting with researchers, partners and the Minister just prior to the main event to discuss the platform and its potential to change Canadian health research and health care delivery.
The general atmosphere during the event was one of optimism and enthusiasm, which was best reflected in the research team’s project summary:
“This [data p]latform will revolutionize our sector by enabling investigators to conduct multi-jurisdictional and person-focused research more efficiently…[It] will allow us to address the most health research challenges facing the public…and build Canada’s international leadership in the health field.”