Our goal is to help make Canadian child health research more streamlined, timely and efficient. Working collaboratively with the CHEER advisory committees and stakeholders, we are developing a web-based research ethics review platform that will include a Canada-wide ethics review system, tools to facilitate collaboration, and training and support services. The program will be bilingual, accessible from anywhere in Canada, and customized to support the needs of the child health research community, considering different states of readiness and legislative and structural differences. Most importantly, it will enable pediatric study submissions to be reviewed by a single REB, multiple REBs or new ethics board/committees comprised of members from various REBs across Canada, enabling more efficient multi-site clinical trials.
The CHEER Web-Based Research Ethics Review Platform Launched December 8th, 2020!
The CHEER online ethics review forms— for clinical trials and observational studies—are now live and ready for the first CHEER research studies! These forms and requirements were informed by a review of ethics forms from across Canada and by input from REBs and investigators from across the country.
We are currently working with a small number of research studies to pilot the CHEER system, policies, and supports. However, if you are thinking of submitting a study for ethics review through CHEER in the future, please feel free to contact the CHEER project manager, Samantha Drover (firstname.lastname@example.org).
Currently Drafting CHEER Pediatric Assent/Consent Templates
The CHEER pediatric assent/consent working group collected and reviewed pediatric-specific assent/consent templates from REBs across Canada. After identifying key elements from this cross-Canada sample, the working group is now drafting the CHEER assent/consent templates.
Research Ethics Board (REB) Assessment Program
Consistency and quality across participating REBs are needed in order to enable a single REB review for multi-site studies. In collaboration with REBs, our advisory committees and others, we are developing standards and creating a REB Assessment Program to qualify REBs for participation in the CHEER web-based collaborative review program. Customized and robust, the Assessment Program ensures that REBs are following regulatory compliant review processes and are conducting high-quality reviews.
Development of the CHEER REB Assessment Program is Underway
The development of the CHEER REB assessment program is underway. In the coming months, we look forward to qualifying REBs from across Canada, enabling boards from any Canadian jurisdiction to act as the REB of record for a CHEER multi-site child health study.
As we pilot the CHEER system with a small number of research studies, REBs in Ontario that are already qualified will undergo a supplementary qualification process to serve as the REB of record. The CHEER REB advisory committee will be engaged in identifying applicable provincial requirements outside of Ontario, and any modifications to the review and qualification process that make sense for the cross-Canada initiative.
CHEER Research Ethics and Education Program
By sharing knowledge about ethics review across the child health research community, we can generate greater efficiencies and raise ethical standards. CHEER’s Research Ethics and Education Program provides educational opportunities for researchers, administrators, REBs, patients and families and others to support high-quality and efficient REB reviews. Examples of educational opportunities include:
Child health research ethics educational modules and webinars
Educational supports to improve the efficiency and quality of REB reviews, addressing common issues and challenges in research ethics review for child health research, including ethical implications associated with study design, and supports for patients and family members participating on REBs
The Queen’s University, Faculty of Health Sciences, Office for Professional Development and Educational Scholarship will play key role in supporting the educational programming.
The CHEER Patient and Family Advisory Committee is Established
The CHEER Patient and Family Advisory Committee (PFAC) was established in the fall of 2020 and includes lay and community members of REBs from across Canada, a member of the National Cancer Institute central Institutional Review Board, and others with an interest in the intersection between ethics and the lay member. The purpose of this committee is to provide support, guidance, mentoring and education for patient, family, and lay representatives of REBs. The first main project for the CHEER PFAC involves conducting an interview-based needs assessment to understand the role of the REB lay member, available training, and desired ongoing educational resources. This needs analysis will inform the thoughtful and targeted development of educational materials for lay members of REBs.
Data Collection is Complete for the Educational Needs Assessment Survey
Data collection on the CHEER research ethics educational needs assessment survey is complete, with over 220 responses from researchers, REB members, and patients and family members from across Canada. The CHEER educational working group presented preliminary findings from this survey at the 2021 MICYRN/CHEER General Assembly (January 22-23), gathering input from CHEER and external stakeholders on priority topics and educational methods.
Looking Ahead: Streamlined Ethics Review Beyond Child Health Research
We are pioneering a new, Canada-wide approach to streamlined ethics review for child health research, but that may just be the beginning – a ‘pilot’. Throughout the CHEER initiative, the CHEER Team and our many partners across Canada will assess our successes and challenges and identify future opportunities to consider the feasibility of implementing a streamlined research ethics process beyond child health research.