Canadian Researchers Have Limited Access to Vital COVID Data

Diana Swift

July 20, 2022

Barriers to accessing patient data on SARS-CoV-2 vaccination are impeding researchers' ability to inform the national pandemic response and maintain public trust, according to investigators. Canada’s 10 provincial health ministries have been reluctant to share these data.

After the SARS outbreak in 2003, an independent commission in Ontario recommended that fast-track access to administrative health data be provided to researchers. Nevertheless, vital public health information is being withheld from researchers and policy makers, according to an analysis.

Dr Andrew McRae

"The absence of a coordinated, pan-Canadian, secure research environment for interprovincial data linkage and analysis has been highlighted as a shortcoming in Canadian research infrastructure that has limited the timeliness of Canadian research, both before and during the pandemic," wrote emergency physician Andrew McRae, MD, PhD, a researcher at the University of Calgary's Cumming School of Medicine in Calgary, Alberta, Canada.

McRae and colleagues performed an analysis documenting COVID-19 researchers’ recent experience across Canada. The results were published online July 18 in Canadian Medical Association Journal.

No Legal Roadblocks

Provincial health ministries are legally empowered to release anonymous data for legitimate and ethically approved research purposes, provided that they protect patients' privacy.

The authors argue for partnerships between the keepers of provincial data and the country’s Health Data Research Network to enable timely data transfer. COVID-19 clinical data sets, with links to patient-level administrative data on vaccination, could be leveraged as clinical trial platforms to prospectively evaluate the safety and effectiveness of vaccines and new COVID-19 treatments, the authors wrote.

As an emergency department physician, McRae understands the importance of knowing patients’ COVID-19 vaccination status, which was often poorly documented in medical records. Since the pandemic began, his group, the Canadian COVID-19 Emergency Department Rapid Response Network, has been studying the immunization status of patients with COVID-19, with a view to predicting clinical outcomes and facilitating diagnosis in the absence of laboratory tests.

Last year, it received a mandate from the federal government’s Canadian Immunity Task Force to study COVID vaccination in the real-world setting. “We’ve been trying to get provincial vaccination data released since the spring of 2021, and so far, we have an agreement with the health ministry of British Columbia and are close to an agreement with Nova Scotia,” McRae told Medscape Medical News. But there have been delays and prolonged negotiations with other provinces, and some have flatly refused to cooperate on vaccination data. “Ontario, Saskatchewan, Manitoba, and Quebec are so far tied for the bottom!”

In addition to documenting the experiences of COVID-19 researchers across Canada, the authors undertook a province-by-province legal analysis of public health legislation and the accessibility of personal health information. “We concluded that there ought not to be any legal roadblock to releasing data to researchers, provided their study has undergone review by a research ethics board,” said McRae.

So why the provinces’ reluctance? It’s partly the inborn risk aversion of bureaucratic organizations and the fear that collected patient information, even though it is largely deidentified, may accidentally fall into the wrong hands. Furthermore, the process for releasing data is cumbersome. “The ministries say they’re too understaffed and under-resourced to process the necessary legal agreements for disclosing information,” said McRae.

As a result, some research projects don’t get done or don't get completed soon enough to be useful to clinicians and policymakers, he said. “By the time we get the information, it’s outdated. The data from waves one and two of the pandemic are not applicable to the Delta and Omicron waves. We need to access data rapidly.”

Centralized Approach Needed 

Dr Srinivas Murthy

Commenting on the findings for Medscape, Srinivas Murthy, MD CM, MHS, an infectious diseases physician and pandemic preparedness researcher on the faculty of medicine at the University of British Columbia in Vancouver, Canada, said that the paper has implications beyond the immediate need for sharing COVID-19 vaccination data. Murthy was not involved in the analysis.

“It speaks to the broader issue of the availability of important data collected by public health agencies that should be accessible to researchers conducting studies with approved protocols,” Murthy told Medscape. “The importance of sharing data for these emergency health purposes cannot be overstated.” It is also important from the standpoint of government transparency about the data it collects.

The legal landscape to be navigated is slightly different in each of Canada’s 13 provincial and territorial health systems, Murthy noted, and even the government can have difficulty accessing provincial health data. “Going forward, there needs to be a more centralized approach. In other jurisdictions such as the United Kingdom, where there’s a national single-payer healthcare system, it’s easier to establish an environment of trust that involves no interjurisdictional issues.”

Ultimately, it will take political will to establish a common, central access portal to get this information to researchers and policymakers, and the federal government should exercise its responsibility and take the lead, Murthy added. “Are they going to push to have a national framework for control of health data or are they going to let ownership continue to devolve to the provinces and leave things at the status quo?”

The Canadian COVID-19 Emergency Department Rapid Response Network is supported by funds from the following nonprofit organizations: Canadian Institutes of Health Research, Ontario Ministry of Colleges and Universities, Saskatchewan Health Research Foundation, Genome British Columbia, Fondation du CHU de Québec, Sero-Surveillance and Research (COVID-19 Immunity Task Force Initiative), the BC Academic Health Science Network, and BioTalent Canada.

McRae reported grants from the Canadian Institutes of Health Research and Roche Diagnostics, consulting fees from Servier Pharmaceuticals, and participation with the Alberta Health Services COVID-19 Scientific Advisory Group. Murthy disclosed no relevant competing interests.

CMAJ. Published online July 18, 2022. Full text.

Diana Swift is a freelance medical journalist based in Toronto.

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