3/15/21 & 4/5/21
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/
Dungan, R., 2019. Engagement Science: Introducing Inclusive Research Practices & Potential Impacts. [Blog] Academy Health. Available at: https://academyhealth.org/blog/2019-01/engagement-science-introducing-inclusive-research-practices-potential-impacts
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.
Bevans, K. and Kratchman, A. FYREworks. Family, Youth and Researcher Education. Available at: http://www.fyreworkstraining.com/. On line training designed to help researchers, teens, and families understand what partnership-based research is and how they can work together to answer questions about children’s health.
- Guidance for Completing PCORI's Updated Engagement Plan for New Awardees and Future Applicants Webinar Recording. Patient-Centered Outcomes Research Institute. June 19, 2018. Available at: https://www.pcori.org/video/guidance-completing-pcoris-updated-engagement-plan-new-awardees-and-future-applicants-webinar.
Research Fundamentals: Preparing You to Successfully Contribute to Research. Patient-Centered Outcomes Research Institute. February 2, 2021. Available at: https://www.pcori.org/engagement/research-fundamentals?utm_source=email. Self-paced, on-demand training for those who are new to patient-centered research and want to learn more about the research process. Can be used to train patient and other stakeholders.
- Updated Engagement Plan Template. Patient-Centered Outcomes Research Institute. October 2020. Available at: https://www.pcori.org/sites/default/files/PCORI-Updated-Engagement-Plan-Template.pdf.