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The Bloorview Research Institute Family Engagement Committee (RFEC) works in partnership with the Bloorview Research Institute (BRI) to engage families in research.

Under the family engagement in research framework, the RFEC:

  • Advises and makes recommendations to the BRI from experienced family voices
  • Helps plan, review and advise on research studies and projects as a reviewer, advisor or communicator
  • Facilitates the development and enhancement of access to information, support, and educational resources to help clients and families get engaged
  • Assists staff in identifying research needs and priorities of clients and families
  • Participates in high-profile BRI events
  • Promotes opportunities for communication of research initiatives and results
  • Promotes BRI initiatives with families and community partners

The family engagement in research framework

The Family Engagement in Research framework was developed to involve clients and families in research beyond the role of a participant.

To learn more about the research framework, visit the Family Leadership Program page and click the first dropdown box titled Family Leadership Program.

Membership

The RFEC is made up of family members of a Holland Bloorview client, clients of Holland Bloorview (current or past), family members of a research participant, and participants in BRI research studies (current or past). Please contact us if you have any questions.

Not sure if the RFEC is right for you? Join as a guest

Guests are welcome to attend meetings, and provide input. Guests shall notify the RFEC staff liaison, in consultation with/at the discretion of the RFEC co-chairs, of their wish to attend a particular meeting a week in advance. If you are interested in joining a meeting, you must contact us.

RFEC achievements

Recent achievements include:

  • Created the research framework to involve families in research beyond the role of a participant
  • Supported the development and design of the BRI’s Participate in Research page, enabling clients and families to search for relevant studies to join as participants
  • Developed guidelines for communications material
  • Innovated the “Quick Consultation” process in order to provide scientists and BRI staff feedback at different stages of their research