Promoting Child Health Research through a Collaborative Approach to a Streamlined Ethics Review

Executive Summary: Community and Stakeholder Engagement Workshop Report

January 21-22, 2019; Toronto, ON

Investigators developing multi-jurisdictional research studies in Canada often encounter challenges gaining the required Research Ethics Board (REB) approvals in a timely way and with consistent results. This can delay the initiation of research studies in Canada, thereby increasing the financial burden of conducting research which is often publicly funded, and reducing the ability of Canadians to compete in the international arena. 

In response to these challenges, the Canadian Institutes of Health Research (CIHR) Institute of Human Development, Child and Youth Health (IHDCYH) is developing a pilot initiative – focused on Canadian children’s hospitals and their respective research institutes – designed to promote child health research through a collaborative approach to a streamlined ethics review.

CIHR-IHDCYH convened a Community and Stakeholder Engagement Workshop to engage and consult a broad cross-section of stakeholders with an interest in advancing a collaborative pediatric research ethics initiative. Workshop participants included nearly 50 hospital and research institute leaders and senior administrators, ethics specialists, and representatives from Health Canada, provincial health ministries, health authorities, and other interested federal and provincial bodies.

The workshop included high level presentations and a “rapid-fire” panel discussion that summarized research ethics processes in different provincial jurisdictions, and international best practices and potential models. During small-group and plenary brainstorming sessions participants then discussed the fundamental requirements of a streamlined review approach – including the needs of local pediatric organizations, confidence in the system, and the required infrastructure, governance, and operating structures.

The workshop report contains a summary of the main suggestions and observations brought forward from the deliberations. This Executive Summary highlights the key themes from the workshop discussions, to support the next steps in the development of this initiative.

Key workshop discussion themes:

  • Participants were in agreement to work toward a streamlined ethics review process with the goal of achieving a single review
  • Development should be through a collaborative process that engages with groups according to their state of readiness
  • Broad engagement is essential, including ethics and jurisdictional legal expertise, as well as research and administrative leadership
  • Building trust between REBs will be essential to allow progression towards delegation of acceptance of a review
  • The legislative differences between jurisdictions must be considered during the development of the process
  • The process must be mindful and inclusive of differences in provincial process and needs (e.g., language)
  • There should be engagement with First Nations, Métis and Inuit groups during the rollout of the initiative
  • The platform should provide a single point of contact that supports socialization of standardized practices/shared education
  • Appropriate education pieces need to be developed for both researchers and for REB Chairs/Members
  • To be successful, the delegated scheme will require robust evaluation designed to support the development of trust among participating sites
  • The ethics review should be severed to the greatest extent possible from the other parts of the approval and authorization process, including operational, science, and contractual pieces
  • The resulting REB process should be completed in a timely and predictable manner
  • The attendees indicated that the members of the current working group were appropriate to move the process forward, but that additional supplementation to broaden expertise and geographic representation was needed

The meeting closed with thanks for the contributions, the energy and the enthusiasm. There was general agreement that this was a necessary and important opportunity. The foundation has been laid and now the work begins for the whole community to make this a success for the pediatric research community and for Canada’s children and families.

The full workshop report is available upon request, please email IHDCYH-IDSEA@cihr-irsc.gc.ca.

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