Citizen Engagement Program
THE CITIZEN ENGAGEMENT PROGRAM AIMS TO MEANINGFULLY AND EFFECTIVELY ENGAGE AS MANY PEOPLE TOUCHED BY BRAIN-BASED DEVELOPMENTAL DISABILITIES AS POSSIBLE TO GUIDE THE NETWORK.
This year saw the culmination of many years of building relationships and fostering connections bear fruit for the Citizen Engagement (CE) Program. In 2021-22, the CE team:
Shared our findings on CHILD-BRIGHT partner engagement
After many years developing and refining our engagement strategies, we asked for feedback on these from our network members via surveys and interviews. We published the results in a three-part blog series, “Stakeholder Engagement in the CHILD-BRIGHT Network, 2018-2020.” The series was prepared by our Measuring Patient Engagement working group, composed of CE and Knowledge Translation Program members, in collaboration with our Communications team.
Working with our patient-partners, we developed tip sheets for researchers and patient-partners involved in POR based on the survey responses from the open-ended questions on the Public and Patient Engagement Evaluation Tool (PPEET), part of the Stakeholder Engagement series.
Patient-partners were involved at every step of this process. They were part of the working group; contributed to the series by responding to the surveys and participating in the interviews; provided commentary on the survey results; gave recommendations for the network on how to improve and sustain engagement and created resources for teams to do so, and a parent-partner conducted half of the interviews.
Recognized leaders in patient engagement
CHILD-BRIGHT Patient-Partner and inaugural Frank Gavin Patient Engagement Leadership Award recipient Donna Thomson
Over the past six years, we’ve been proud and grateful to note the emergence of many leaders in patient engagement within our network and across Canada. In 2021, we launched the Frank Gavin Patient Engagement Leadership Award to honour Frank Gavin (former Director of Citizen Engagement) and to recognize other leaders in patient engagement in research related to children with brain-based developmental disabilities and their families.
Our first recipient, Donna Thomson, received the award for her exemplary leadership skills, active partnership in research, advocacy work, and contributions to CHILD-BRIGHT as well as to other organizations. Our patient-partners (parents and youth) sat on the panel and contributed to the selection process and gave helpful feedback for the next iteration.
Furthered our commitment to EDI
We hired a student through the Canada Summer Jobs program to help further CHILD-BRIGHT’s commitment to advancing equity, diversity, and inclusion (EDI). The student analyzed our current membership demographics, gathered information regarding EDI best practices in patient-oriented research (POR), compiled and presented this information to help inform our strategy.
Prepared for CHILD-BRIGHT’s Phase 2
We developed five main objectives for Phase 2:
Creating a toolkit on best practices in patient-engagement and POR based on learnings from Phase 1 for teams to incorporate at the start of their implementation science (IS) research projects
Recruiting from underrepresented groups to the Citizen Engagement Council and National Youth Advisory Panel to ensure that more voices are heard
Updating our patient-partner compensation guidelines based on gaps identified by our patient-partners
Supporting all IS projects and knowledge mobilization (KM) outputs to engage patient-partners during Phase 2, from protocol development through to final reports
Continuing to develop our engagement measurement strategy to optimize patient-partner engagement for Phase 2.
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