APA SIG: Pediatric Clinical Research Network

SIG Chair(s)

• 

  Christopher Stille, MD, MPH (he/him/his)

  Professor and Section Head, General Academic Pediatrics
  University of Colorado School of Medicine
  Aurora, Colorado, United States
• 

  H. Shonna Yin, MD, MS (she/her/hers)

  Associate Professor of Pediatrics and Population Health
  Pediatrics
  NYU School of Medicine
  New York, New York, United States

Session

Description: The involvement of patients, families and others with lived experience as full partners (LEPs) in research is becoming widely accepted as a best practice by both funders and investigators. While guidelines exist from PCORI and other organizations, the information and recommendations for the day-to-day practice of including LEPs as full research partners are disjointed and often contradictory. Pediatric clinical network research is a good arena in which to explore the "how-to" of LEP partnerships, as the multi-site, multi-population nature of the work creates opportunities to tailor LEP roles to project needs, and to explore the impact of partnerships on project outcomes.

The PCRN SIG discussion will look at the spectrum of LEP involvement in network research and share experiences about processes, challenges and outcomes related to LEP partnerships. As a centerpiece, two recent, publicly available publications from the Children and Youth with Special Health Care Needs Research Network (www.cyshcnet.org) describe ways to achieve productive partnerships and measure their impact. With many funders now requiring LEPs’ participation as co-investigators, and the recognition that their involvement improves all aspects of a research project, investigators must learn to partner with LEPs and effectively use the resources that they provide.

The discussion will be led by Christopher Stille, MD, MPH, SIG co-chair and PI of CYSHCNet, and will include Charlene Shelton, PhD, Network manager and co-lead for family engagement along with an experienced family research partner. Panelists will share experiences from LEP partnerships within network projects and stimulate discussion among SIG members.

Presentations:

• 3:45 PM – 3:50 PM ET

  Introductions
  

  Speaker: Christopher J. Stille, MD, MPH (he/him/his) – University of Colorado School of Medicine
• 3:50 PM – 4:30 PM ET

  Experience and Lessons Learned from Including Lived Experience Partners as Co-Investigators in a National Research Network
  

  Speaker: Charlene Shelton, RN, MA, MPA, PhD (she/her/hers) – University of Colorado Anschutz Medical Campus
• 4:30 PM – 5:15 PM ET

  Family perspectives on partnering in research
  

  Speaker: Brenda Agnew (she/her/hers) – Aacpdm/CP-net/PONDA/Child-Bright