1.Patient Engagement Working Group
“Nothing about us, without us”
The CRRAB Patient Engagement Working Group (PEWG) aims to empower retinoblastoma patients to engage in research, to ultimately improve retinoblastoma patient outcomes. This group is made up of retinoblastoma patients, parents, researchers, and clinicians from across Canada who meet once a month to discuss how we can accomplish the goals of the Canadian Retinoblastoma Patient Engagement Strategy:
- Share research results with people affected by retinoblastoma (e.g., survivor, the immediate family of someone diagnosed with retinoblastoma etc.);
- Include a large diverse group of people affected by retinoblastoma in research; and
- Promote research that is created and led by people affected by retinoblastoma.
Primarily, we work to promote the Canadian Retinoblastoma Research Registry, a list of members in the retinoblastoma community, to increase reach of our research engagement opportunities and to ensure patient partners are representative of those affected by retinoblastoma.
We have also created a network of retinoblastoma patients who act as champions of retinoblastoma research and patient engagement. Our goal is to have a champion leader in each province who collaborates with their local communities to promote retinoblastoma research and CRRAB initiatives.
In addition, the PEWG hosts Retinoblastoma Awareness Tables in the eye clinic at SickKids to introduce patients and parents to CRRAB initiatives, and the Canadian Retinoblastoma Research Registry. Our goal is to host these awareness tables in retinoblastoma clinic across Canada.
To learn more about the PEWG and to share in our passion for research created and led by retinoblastoma patients, join our working group, please email us at email@example.com.
2. Research Advisory Working Group
The Research Advisory Working Group was developed to answer the question: “How do we facilitate ethical and equitable interactions between researchers and patients?”
In this working group, participants review requests from research teams who wish to recruit participants for relevant retinoblastoma studies through the Canadian Retinoblastoma Research Registry. The request is vetted by the Research Advisory Working Group and a lay summary of the request to participate is emailed to the registry participants who have expressed interest in being contacted for research opportunities.
This working group creates this very quarterly newsletter and corresponding blog (www.rbcanadaresearch.com) that includes articles co-written by researchers and patients about new research, retinoblastoma conferences, or experiences with patient engagement in research projects. The group is currently updating the website to better highlight the great work CRRAB is doing – stay tuned for the big reveal!
3. Research development working group
This working group evolved from a previous working group focused determining the top 10 retinoblastoma research priorities in Canada. Their goal is to design a research proposal based on one of the Top 10 priorities. The Research Development Working Group members are working towards solving Priority 3:
How to provide culturally competent social, emotional and psychosocial support to retinoblastoma patients, survivors, parents and families (at diagnosis
The members created the study protocol and have applied to grant competitions that are currently under review. See our previous post about this project here.