Background: Adolescents and young adults (AYAs) with autoimmune diseases face a critical point in their disease trajectory and require targeted education to support their transition into adulthood. Yet healthcare providers (HCPs) and researchers have been developing clinic processes and policies for three decades with little change in patient outcomes. AYAs need access to up-to-date, evidence-based disease information to fully engage in their care and there is a need for a drastic change in dissemination practices to reach the AYAs themselves, not just the scientists who study them.
Proposed Solution to the Problem: The proposed solution emphasizes a “for patients, by patients” strategy by mobilizing AYA patients to establish new, tailored channels of communication to disseminate patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) about shared decision making to their peers.
Objectives: The primary objective of this project is to build the capacity of the project team’s nation-wide, virtual council of AYA patient leaders—Young Patients’ Autoimmune Research and Empowerment Alliance (YP AREA)—to disseminate PCOR/CER to their peers. Specific aims involve streamlining YP AREA’s internal processes to disseminate research materials efficiently and effectively (aim 1), as well as strengthening YP AREA’s collaboration with community organizations (aim 2) and HCPs (aim 3) to maximize reach in the AYA community.
Activities: To accomplish aim 1, AYA Council members and the project team will receive dissemination training and reorganize YP AREA’s structure to focus on dissemination. In aim 2, YP AREA’s work will concentrate on reaching AYA patients most affected by health inequities by partnering with community organizations to create three new channels of communication to reach patients. Aim 3 centers on building relationships with HCPs to create a process for disseminating PCOR/CER to AYA patients in clinics.
Projected Outcomes and Outputs:
- Short-term outcomes during the project period include: 16 AYAs trained to disseminate PCOR/CER to their peers; a framework describing YP AREA’s dissemination strategy; three new channels of communication focused on promoting health equity for AYA patients; a network of community organizations and HCPs who endorse and refer to YP AREA; and a YP AREA to Clinic Toolkit.
- In the two years post-project, YP AREA will launch tailored dissemination channels educating AYAs on shared decision making and will have regular distribution of YP AREA resources within clinics.
- Long-term (3 years+ post-project), YP AREA will have formal partnerships with HCPs, researchers, and community organizations to disseminate PCOR/CER to AYA patients and will obtain research funding to examine the effectiveness of a patient-driven model for dissemination.
Patient and Stakeholder Engagement Plan: The proposed project stemmed from the ideas of YP AREA Council members, all of whom are AYA patients. All project activities will be carried out by patients, including the project team, all of whom have autoimmune conditions. YP AREA is committed to creating a bilateral exchange between patients and researchers in all its work.
Project Collaborators: YP AREA will be establishing partnerships with community organizations and HCPs. The project team will seek out community leaders with expertise in AYA communities most affected by health inequalities to accomplish aim 2 and will develop an Advisory Committee of HCPs/researchers as part of aim 3.