Learning Session 5 & 6: Patient and Family Partners in Research

3/15/21 & 4/5/21


PRESENTER: Amy Kratchman, BA, Children's Hospital of Philadelphia


LEARNING OBJECTIVES

Participants will be able to: 

  1. Describe an institution-wide response to the increased demand for family engagement in research.
  2. Describe processes of identifying, onboarding, training, and mentoring Research Family Partners and researchers to establish and maintain research partnerships, and collaboratively conduct research.
  3. Provide examples of Family Partners’ varying levels of engagement in research.

REFERENCES

  • 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. 



SLIDE DECK 

Learning Session 5: Patient and Family Partners in Research