Community Reviewers help Cystic Fibrosis Canada Fund New Research
MARCH 28, 2022
One of the guiding principles of Cystic Fibrosis Canada’s Strategic Plan is to ensure that our work resonates with the Canadian cystic fibrosis (CF) community. That is why, in advance of our Research Grants & Awards Competition last year, we worked with our community to determine your top priorities when it comes to cystic fibrosis research. Through a survey and priority setting workshops, we distilled the priorities down to the top 11. For more on the priorities and our process, see our infographic here.
When we launched our Grants and Awards Competition last fall, we asked that the applicants provide us research proposals on these 11 priority topics. To evaluate these research proposals and fund the best science, we’ve always had a lengthy review process that includes written critiques by international CF experts, written reviews by a panel of Canadian and US CF experts, and an in-person discussion by that panel on the scientific merits of the applications. For the past several years we also included one CF patient and one CF parent among the reviewers. This ensured that we funded only the best science and had a little perspective from the community.
This year the COVID-19 pandemic forced us to hold our three days of review meetings virtually rather than in person. And this provided a unique opportunity: we no longer had to limit community reviewers to one CF patient and one CF parent.
We put out a call to Elevate, our community consultation program, to request volunteer community reviewers. The role was to work alongside our scientific reviewers to help us determine not only the best scientific proposals but ensure that they aligned with the priorities of our community and would have the potential for positive benefits to those in Canada with cystic fibrosis. The response exceeded our expectations!
Many community members put their names forward for consideration, unfortunately we couldn’t choose everyone. We narrowed the list to eight diverse individuals, chosen to best represent the CF Community. We included individuals living with cystic fibrosis and CF parents from different areas across the country, those who would and those who would not benefit from CF modulators and those who have and have not had a lung transplantation.
“I feel confident we are getting good research,” declared Twyla McDougall, CF Parent and Community Reviewer
Eight Community Reviewers, 19 Research Proposals and Three Days of Review Panel Meetings
After an evening of training on how to review these lengthy proposals (most over 70 pages!), our Community Reviewers got to work. They spent several hours per day, every day for over two weeks reading and writing their thoughts on the research proposals. The Community Reviewers dove in, worked hard, asked questions and committed themselves to the process.
“I was really impressed by the quality of the research applications,” said Melanie Morin-Pelletier, Person with CF, CF Parent and Community Reviewer.
Finally, with all the research proposals read, and the critiques written, we turned our attention to the review panel meetings. The scientists on the review panel were surprised to see so many enthusiastic Community Reviewer faces on the screen. As the meeting got underway that surprise quickly changed. The Community Reviewers were prepared, they were eager. They had good questions about the proposals and valuable comments on the impact of the proposed research on those living with cystic fibrosis. And the scientists were impressed!
Jennifer Harbin, CF parent and community reviewer reflected on the experience: “I felt very valued and respected, and the scientific reviewers cared about my opinions,”.
The scientific reviewers listened and carefully considered the points the Community Reviewers raised. Both groups influenced how the other scored the proposals. Examining the proposals from both viewpoints improved the process and helped to generate good feedback for all applicants, whether their proposals were successful or not.
“It was a challenging but really rewarding experience that increased my confidence in CF Canada and the work they are doing” remarked Twyla McDougall, CF parent and community reviewer.
Thank you to the Community Reviewers and members of the Scientific Review Panel for your time and efforts in ensuring that Cystic Fibrosis Canada is funding world-class research.
Watch for our announcement this spring on the newly funded research from the 2021 Grants & Awards competition that our Community Reviewers helped to select. And be sure to sign up for Elevate, if you haven’t already done so, so that you have the chance to participate in future opportunities such as this.