Check out our Patient and Family Advisory Committee!
Meet our Patient and Family Advisory Committee members.
Our work in patient engagement is guided by our Research Patient and Family Advisory Committee (PFAC). PFAC is made up of CHEO family members who believe in the impact research can have on how we care for kids at CHEO and beyond as well as six administrators/researchers from the CHEO Research Institute (CHEO-RI). The committee works to engage families in all aspects of research conducted by CHEO-RI.
What an amazing year in Research Patient Engagement!!
2021 Annual Report
To view the plain text version, please see link below.
Based on experienced family voices, the PFAC advises and makes recommendations to CHEO-RI staff in order to promote family engagement in research. We’re moving beyond families as only research participants to families as partners in all aspects of the research process from developing an idea or research question to sharing the study results.
Responsibilities and Opportunities
- Attend monthly meetings at the CHEO-RI (in person, teleconference or video conference).
- Advance client and family-centred research.
- Help researchers identify and plan future directions.
- Provide advice on the communication strategy:
- Help researchers plan how to best share the results
- Help researchers ensure that results are understandable to families who were part of the research
- Co-present or co-publish findings
- Help with social media communication (e.g. Discovery Minutes)
- Advise the CHEO-RI on how to promote family engagement in research
- Share knowledge with caregivers and other parents
Did you know that children, youth and families can have an active role in CHEO research – beyond consenting to participate in a study! You can help to determine the research questions to be answered, influence the study design, and so much more! This video shares many ways that the general public can help to make discoveries today for healthier kids tomorrow. Special thanks to the Algonquin College Interactive Media Management program for the production of this video. Kudos, Marida Waters, Joël Boudreau, Helen (Ye) Yang.
Are you ready to be a partner in the research process? Clinical Trails Ontario created the following tool to help you decide if you may be ready to partner/get engaged in the research process. Find more information here.
What is the Research Family Leader Program?
You can be a partner in the research process at CHEO. One way is through our Research Family Leader Program. We are currently looking for CHEO family members who believe in the impact research can have on the care we provide. As a Family Leader you will be given the opportunity to provide feedback on research projects in two ways: as a Research Project Reviewer or a Research Project Advisor.
View our amazing Family Leaders page
Come join our team!
As a Family Leader, your experiences are a powerful tool for inspiring the research we do at CHEO. By sharing your perspective you can make an impact on the discoveries we are making every day that will lead to healthier children and youth in our community and beyond.
As a Research Project Reviewer, you may:
- Review a short research project summary template.
- Complete a short on line questionnaire based on the summary.
- Provide letters of support for a grant application (Program Coordinator will assist).
As a Research Project Advisor, you may:
- Be part of the study team.
- Provide regular feedback as the project gets ready to launch and throughout its life.
- Your expertise as a CHEO family member will help project teams problem solve issues that may come up along the way.
- Attend a screening interview.
- Complete a police reference check: vulnerable sector.
- Sign a confidentiality agreement and volunteer contract.
- Complete Family Leader orientation & training.
- Has a sincere interest in promoting research.
- Is a good listener and communicator.
- Commits to maintaining respect for privacy and confidentiality.
- Demonstrates respect for diversity and differing opinions and works collaboratively.
- This is a volunteer opportunity.
- Education & training opportunities will be offered to those who wish to learn more about how research projects work.
- Much of the work can be done from home – but if you do have to come to CHEO, your parking and childcare costs will be covered.
We want to foster a spirt of collaboration and appreciation for all of the patients and family members who partner with us in research at CHEO. We have a newsletter to update and celebrate our patent and family partners called ENGAGE. Back issues can be viewed in the links below.
ENGAGE Newsletter Issue 76 – December 2022
Please see attached plain text ENGAGE Newsletter Issue 76
Podcast: Family Engagement in Research Program (FER)
Have you ever wondered how the CHEO Research Institute created its Family Engagement in Research Program (FER)? This podcast explores the topic and shares the experiences of the staff, patients, and family members that developed the foundations of the CHEO Research Institute (RI) FER program.
Listen to the podcast here.
Meet the podcast participants:
Who may be interested in this podcast?
• If you are considering becoming a member of PFAC or the FER this gives you an inside-look to what it’s all about and the rewarding experience you can expect.
• If you are a researcher looking to involve patients and families in your research this is a great starting point.
• If you are a research institution or body looking to develop a similar program or enhance your patient and family engagement, you will hear from the executive level the journey to implementation.
Don’t have an hour to listen? Here are some quick links to key topics:
• 3.55 How the FER program started? RI staff respond.
• 11:48 How the FER program started? Family leaders respond.
• 17:10 Recruiting? How did the program bring on volunteers.
• 20:10 Strengths? What keeps the group thriving.
• 31:05 Communications? The newsletter, coordination, and connections within the program.
• 37:02 Partnerships? How to ensure partnerships are operating smoothly?
• 43:03 Potential stumbling blocks? Barriers to development
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