Background: Adolescent and young adult (AYA) patients with chronic conditions are a growing demographic at a critical point of transition as they enter adulthood with a lifelong condition that will require them to effectively navigate and manage their medical, educational, financial and psychosocial needs simultaneously. Generation Patient is a nonprofit organization created and led by AYA patients.
Motivation: As an organization led by young adult patients, the project team identified an urgent need to examine how patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER) on the topic of peer support can reduce isolation and promote disease acceptance among AYA patients.
Goal: The project goal is to build capacity to engage in PCOR/CER to assess peer support as a crucial intervention for young adult patients.
Objectives: Project objectives are to:
- Form a multi-stakeholder group of AYA patients, medical professionals and researchers to engage in a two-year Roundtable on Peer Support for Young Adults with Chronic Conditions in which they will identify the need, current challenges and opportunities to develop future peer support PCOR/CER.
- Co-develop a proceedings document to outline findings of the Roundtable discussions.
- Co-develop a peer support toolkit to further engage patient stakeholders in PCOR/CER.
- Co-develop a strategic planning document for future peer support PCOR/CER that incorporates the priorities and needs of AYA patients and other stakeholders.
- Facilitate a multi-stakeholder roundtable.
- Create a proceedings document.
- Create a peer support toolkit.
- Conduct a virtual townhall for dissemination of the findings in both the proceedings document and the peer support toolkit.
- Create a Strategic Planning document.
Deliverables: Deliverables for the first year of this project include hosting the first half of the roundtable meetings, drafting the proceedings document and peer support toolkit, engaging in the learning network and submitting necessary PCORI reports. Deliverables for the second year include the publication of the proceedings document and peer support toolkit after seeking feedback from stakeholder communities; facilitation of the final roundtable meetings and virtual townhall for dissemination; and submission of final reports, roadmap and evaluation to PCORI.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include the development and fulfillment of all the project activities and deliverables listed above to meet the project objectives and lay the groundwork for future PCOR/CER on peer support as an intervention for young adult patients.
Medium-term outcomes (0-2 years post-project period) include initiating young adult patient-driven research about peer support interventions for young adults with chronic conditions. In addition, the project team will continue to disseminate the Peer Support toolkit. The project team will evaluate the success of the toolkit and how peer support changes key patient-reported outcomes by partnering with academic institutions and researchers.
Long-term outcomes (3+ years post-project period) include an increased focus on extended research studies about peer support interventions.
Patient and Stakeholder Engagement Plan: Young adults with chronic conditions will be leading the creation, implementation and dissemination of the project at every stage. Through their roundtable, the project team will include perspectives from additional stakeholders, such as researchers, clinicians, social workers and care partners.