Over the past several months, we have been making exciting progress for our award through the Patient-Centered Outcomes Research Institute for our efforts to advance patient-centered research on peer-support interventions for young adults with chronic conditions. Since our last update in April 2024, we have facilitated five meetings with our multi-stakeholder roundtable to analyze selected research currently available on peer support for AYA patients and produce materials to improve the engagement of adolescents and young adult patients in patient-centered research for peer-support interventions.
Our roundtable members include:
Cecily L. Betz, PhD, RN, FAAN - Professor of Clinical Pediatrics at the University of Southern California Keck School of Medicine, Department of Pediatrics and the founder and editor-in-chief of Health Care Transitions, an open-access journal.
Katerine Melton - A pediatric nurse scientist, young adult patient, and current postdoctoral research fellow at Boston Children's Hospital with research interests in healthcare transition and self-management in adolescents and young adults with chronic illness.
Hillary Edwards, MPH - Director of methodological research and evaluation for The PATIENTS Program in the Department of Pharmaceutical Health Services Research (PHSR) at the University of Maryland School of Pharmacy.
Nikhil Jayswal - A young adult patient from India who founded the IBD Patient Support Foundation (India).
Clarissa Hsu, PhD - A medical anthropologist who has been doing research with Kaiser Permanente since 2001 and who was one of the first researchers to receive funding from the national Patient-Centered Outcomes Research Institute.
Rosa Kelekian, MSW - A medical social worker, young adult patient, and Generation Patient’s program manager who has a wealth of experience in facilitating various types of peer support for pediatric, adolescent, and young adult patients. R
Sneha Dave and Sydney Reed - Project leads, young adult patients, and Generation Patient’s founders.
Defining Peer Support for Young Adults
In July, roundtable members initiated efforts to develop a working definition of peer support for young adult patients. This discussion highlighted the importance of facilitators being peers, noting their critical role in fostering validation and connection within support spaces. Members explored the unique challenges faced by early young adults (teens and early 20s) and older young adults (late 20s and 30s), advocating for program flexibility to meet diverse needs and accommodate various settings, such as online versus in-person environments.
Roundtable members identified the shared experience of chronic illness as a core criterion of “true peer support” for our patient demographic. They emphasized the need to distinguish “true peer support” from other forms of general social or emotional support from those who do not share the lived experience of chronic conditions.
Creating Tools for Patient-Centered Research
The following materials were developed by our roundtable members and will be included as supplement materials in our Roundtable Proceedings, which thoroughly outlines each of our roundtable discussions:
Guidance Document - includes detailed insights and recommendations to guide researchers focused on peer support for young adult patients across and inform them of important considerations to make as they develop and execute their studies of peer support.
Checklist - distills the information from our Guidance Document into clear, actionable steps for researchers studying peer support for young adult patients.
Logic Model - an example to help researchers conceptualize peer support differently, recognizing its unique elements compared to more traditional health interventions.
One of the highlights of our work has been developing practical resources to guide researchers in conducting studies on peer support. Roundtable members decided to create a Guidance Document and corresponding checklist designed to help researchers understand key considerations before conducting peer support studies and involve patients meaningfully throughout the research process. These tools are not just about conducting research; they are about ensuring that research translates into better outcomes for young adults, such as reduced isolation and stronger community connections.
In future discussions, our roundtable members developed the Guidance Document, which stipulates that researchers should provide a clear definition of peer support within the context of their research and key considerations when coming up with this definition. Roundtable members recommended researchers define peer support with the shared experience of chronic illness as the minimum requirement for this definition. Additional layers, such as shared identity or community, should be considered based on the specific population being studied. Core components of peer support interventions—emotional, informational, and appraisal support—were identified, and roundtable members encouraged researchers to clearly articulate the method of peer support chosen for their research and the rationale behind it.
Tackling Measurement Challenges
In October, we held a special two-hour roundtable meeting that was a continuation of our two previous discussions focused on developing our Guidance Document and, more specifically, on measurement and fidelity in patient-led peer-support programs. Roundtable members acknowledged the difficulty of maintaining fidelity in flexible, patient-led programs, emphasizing the need for qualitative methods and tailored metrics such as the UCLA Loneliness Scale. Additionally, roundtable members explored logic models as a tool for guiding program evaluation, cultivating a better understanding of intermediate and long-term outcomes unique to peer support (e.g., reduced isolation, improved mental well-being, and increased social connections).
Looking Ahead: Sharing What We’ve Learned
In November and January, our roundtable members continued working to refine and finalize our Guidance Document and prepare it for wider use. As we enter our project's final phase, we will host a Virtual Townhall to present our findings and share our materials with the broader community. This Townhall is designed for all of our community, researchers, healthcare professionals, mental health professionals, policymakers, and foundation staff. This will be a chance to highlight the importance of peer support and empower researchers and healthcare professionals with tools to improve the engagement of adolescents and young adult patients in patient-centered research for peer-support interventions and encourage the incorporation of peer support into the standard long-term care plans for young adult patients.
Stay tuned, as we will be posting more information about this upcoming Townhall soon! Please sign up for our monthly newsletter to receive updates on this event.
At Generation Patient, we believe that peer support is more than just “nice to have”—it is an essential intervention for addressing the unique challenges faced by young adults with chronic illnesses. By enabling patients to shape this research, we are working to build a future where peer support is authentically recognized as a critical part of their care!