We, members of the Canadian Respiratory Research Network Long COVID-19 Study,1 want to thank Murthy and colleagues2 for their important commentary highlighting the need to improve Canada’s current research infrastructure to support national clinical research studies. This discussion is critical, particularly in light of the current COVID-19 pandemic, where evidence is needed to inform the assessment and treatment of Canadians with post-COVID-19 condition.
Importantly, Murthy and colleagues2 note Canada’s limited ability to rapidly conduct high-priority research, hindered by the need for separate data-sharing agreements and ethics review at each participating hospital site. We experienced long delays (6 mo to more than 1 yr) in receiving ethics and institutional approvals to conduct our low-risk, multisite observational study evaluating the long-term effects of COVID-19. The main factors that contributed to approval delays included the establishment and approval of data-sharing agreements at each of our 11 study sites (across 6 provinces) and separate, full-board ethics review at 5 study sites. Differences in local requirements for information technology and online security, collection of personal health data, recruitment processes, and data storage and retention also contributed to approval delays.
As noted by Murthy and colleagues,2 our experience highlights the pressing need to shift Canada’s current approach to multisite research. Authors wrote, “Those who manage and fund Canada’s health care systems need to view high-priority trials as an integral part of clinical care and to provide adequate and stable infrastructure funding, thus avoiding the current time-consuming and expensive process of developing separate data-sharing agreements and contracts with many hospitals and organizations.” Moreover, they suggest that a centralized national ethics review of study proposals would contribute to a more rapid approval of multisite studies. The implementation of a centralized ethics board for all of Canada may also improve efficiency. The model currently used by Clinical Trials Ontario (where 1 board of record provides oversight) might be considered, although its existing requirement for signoffs from individual hospital ethics boards should be avoided. Furthermore, we suggest that this system should include standardized document templates for consent forms and recruitment materials to minimize discrepancies in requirements across institutions. We also agree that, to improve efficiency, the time required for legal approval of data-sharing agreements between Canadian institutions must be shortened, perhaps with pre-established agreements between teaching hospitals and academic institutions.
The existing process for multisite studies in Canada both delays important and urgent research and consumes disproportionate amounts of scarce human resources and funding — in itself posing an ethical dilemma.
Footnotes
Competing interests: None declared.
For the principal investigators of the Canadian Respiratory Research Network long COVID-19 study.
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