Getting Involved with the Bloorview Research Institute
Family Leaders can use their lived experiences to impact the research done at the Bloorview Research Institute (BRI), beyond being a participant.
Family engagement in research is where families and clients use their lived experience to help inform or shape:
- Which topics, ideas, and questions to research
- The tools to use in a research project
- The context of the research findings
- How the research is used and shared
- Strategic priorities for the BRI
We have a framework that describes the different roles families can have when being engaged in research.
Be a family advisor
- Give feedback or input at one part of a research project
- Can collaborate with the research team (example: a content expert)
Be a family partner
- Be involved in multiple phases of a research project (from early project design, to sharing the results)
- Can be a member of the research team (example: a co-investigator)
Be a lived experience educator
- Shares their story or lived experience to educate, guide, and inspire researchers and trainees
The Research Institute Family Engagement Committee (RFEC)
The RFEC partners with the BRI to engage families in all parts of research done at the BRI. Committee members include: family members of Holland Bloorview clients, current or former Holland Bloorview clients, and staff in the hospital and BRI.
At the meetings, members use their lived experience to:
- Offer feedback to researchers about their current or upcoming projects
- Inform BRI strategy and initiatives, by identifying the needs and priorities of clients and families
- Design educational resources and improve access to information to help clients and families, researchers, and trainees with family engagement in research
The RFEC meetings are on the second Tuesday of every month (September – June). Most meetings are virtual and run from 11am to 12:30pm.
Free parking and free childcare is available in the Ronald MacDonald Playroom during onsite meetings.
For more information on the Research Family Engagement Committee or to request to attend one of our meetings as a guest, please contact firstname.lastname@example.org.
Benefits for families being engaged in research
- Learn about in-development therapies, tools, and technologies
- Give back to the community – help build knowledge about treatments, which may help clients and families in the future
- Learning new skills
- Be recognized for contribution (example: being listed as a co-investigator on a research article)
Benefits for researchers to engaging families in research
- Help to get funding
- Identify the most meaningful research topics, questions, objectives
- Clearer research project (protocol) and tools
- Expanding family-facing networks for recruitment or sharing results
- Service users guiding how the research results are put into practice