Results of a Patient-Centered Outcomes Research Institute (PCORI) Approach to Engaging ASD Stakeholders in Rural Underserved Areas

Background: The Patient Centered Outcome Institute (PCORI) has identified the critical need to address health disparities that exist among patients and connect researchers with stakeholders to focus on what is most important to patients and their families. Building on our initial work with families of children with Autism Spectrum Disorders (ASD), we have been awarded two PCORI grants (Tier 1 and II) to engage and build capacity for families and other stakeholders living in rural areas who are more likely to have reduced access to proper care and use alternative, unproven, and potentially harmful treatments.

Objectives: To describe the 2-tiered process of implementing the PCORI mechanism and report stakeholder generated comparative effectiveness research priorities related to families of individuals with ASD living in underserved rural areas

Methods:  In 2014 our team was funded by the Clinical Translational Research Institute ar our university to establish a Community Advisory Board (CAB) of major stakeholders (e.g., parents of individuals with ASD, community-based healthcare service providers, school teachers) and we conducted a series of focus groups. Results from this study informed two subsequent PCORI funded applications (Tier I and II, 2015-2017), the second of which is currently in progress. This work demonstrates how the PCORI mechanism can be implemented in a systematic manner to engage stakeholders in rural underserved areas and position researchers to conduct comparative effectiveness research studies that are of most interest to the stakeholders.

Results: Following the completion of the initial study that engaged focus group participants to identify barriers to early diagnosis and treatment, we have greatly increased our capacity to reach and engage stakeholders in three rural underserved areas of our state. These vibrant and highly engaged groups are led by community stakeholders and include parents, educators, and community service providers who meet monthly in their rural locations. The group leaders also meet monthly with our centrally located Community Advisory Board (CAB) to discuss their progress and receive professional consultation as needed. These groups have each established their own names, functions, and priorities that will, in the spirit of PCORI, inform subsequent comparative effective research that is most meaningful to them. While several topics have emerged, of most interest is future research evaluating the effects of distance delivered ABA, PRT interventions and remote data capture using state of the art technology

Conclusions:  As noted, the Patient Centered Outcome Institute (PCORI) approach is well-suited to address the needs of underserved and rural ASD stakeholders. Engaging stakeholders from the beginning of the research process (i.e., formulating the comparative effectiveness research questions) is critically important to remove “the mystique” that stakeholders may perceive related to autism research and facilitate their involvement throughout the process of conducting comparative effectiveness studies.