PRESENTER: Amy Kratchman, BA, Children's Hospital of Philadelphia
Participants will be able to:
- Describe an institution-wide response to the increased demand for family engagement in research.
- Describe processes of identifying, onboarding, training, and mentoring Research Family Partners and researchers to establish and maintain research partnerships, and collaboratively conduct research.
- Provide examples of Family Partners’ varying levels of engagement in research.
Brodt A, Norton CK, Kratchman A. So much more than a “pair of brown shoes”: Triumphs of patient and other stakeholder engagement in patient-centered outcomes research. Patient Experience Journal. 2015;2(1):43-49. doi:10.35680/2372-0247.1057. Available at: https://pxjournal.org/journal/vol2/iss1/7/
Forsythe LP, Carman KL, Szydlowski V, et al. Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute. Health Aff (Millwood). 2019 Mar;38(3):359-367. doi: 10.1377/hlthaff.2018.05067. PMID: 30830822. Available at: https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.2018.05067
Kratchman A, Barkman D, Conaboy K, de la Motte A, Biblow R, Bevans K. The Children’s Hospital of Philadelphia Family Partners Program: Promoting child and family-centered care in pediatrics. Patient Experience Journal. 2015;2(1):50-60. doi:10.35680/2372-0247.1063. Available at: https://pxjournal.org/journal/vol2/iss1/8/
FYREworks. Family, Youth and Researcher Education. https://www.fyreworkstraining.com/. Designed to help researchers, teens, and families work together to answer questions about children's health.