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Research Family Partners

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Research Family Partners assists study teams with writing community engagement plans for grant proposals; recruiting, training and supporting families serving on research teams or in advisory council roles; providing experience incorporating the patient and family voice in research; document review; helping with providing feedback in all stages of research including dissemination to the community.

Getting Started

Research Family Partners provides:

  • Assist with writing engagement plans for grant proposals
  • Access to families who are trained and interested in partnering with researchers
  • Recruitment of families with specific backgrounds who are interested in collaborating with research teams, advisory councils, etc.
  • Onboarding, training and support for patients and families to participate on the research team
  • Support for meeting study community engagement requirements
  • Experience providing the “family voice” to research
  • Innovative ideas related to recruiting and engaging family partners and research subjects

Families participate on the research team as co-investigators or serve in a consultant/advisory role and help with:

  • Providing feedback from the family/parent/child perspective
  • Reviewing documents
  • Providing input for all stages of research including:
    • Study design
    • Recruitment strategies
    • Study conduct
    • Dissemination of study outcomes

Training:

  • Research family partners are trained using FYREworks (Family, Youth, and Researcher Education), a set of interactive, web-based training modules and resources that prepare youth, parents, and collaborating researchers to establish, maintain, and operate PCOR partnerships. 
  • FYREworks is available to researchers, patients and families and can be found via fyreworkstraining.com