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Research Family Partners
Published on Aug 02, 2019 · Last Updated 2 months ago
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
