Background: Autistic adults have multiple, chronic, and potentially preventable healthcare needs as compared to same-aged adults without ASD, but we know very little about why these differences are occurring and how to improve outcomes. Within the national literature which discusses individuals with autism, few have used client or patient engagement to prioritize next research steps and desired outcomes. This particular patient community has identified the need for more engagement in healthcare.
Proposed Solution to the Problem: Our team, comprising Co-Project Leads Teal Benevides, PhD, MS, Stephen Shore, EdD, and Anita Lesko, BSN, RN, MS, CRNA, desires to comprehensively prioritize the specific positive health and healthcare outcomes desired by autistic adults, identify potential evidence-based interventions from their perspective, and to engage other stakeholders in implementing the prioritized interventions through a patient centered outcomes research/comparative effectiveness research (PCOR/CER) study.
The objectives of this PCORI Engagement project, Autistic Adults and other Stakeholders Engaging Together (AASET) are to: a) Establish a Community Council (CC) of autistic adults and other stakeholders to inform and guide PCOR/CER to improve health and healthcare delivery; b) Plan and implement 2 national conferences which will support the work of the CC through priority and agenda setting of interventions and outcomes; and c) Draft an engagement plan to include a governance structure for the CC, a written process and metric for evaluating engagement, and meaningful discussion ethical involvement from a human-subjects protection perspective.
Activities: The Project Team will a) Establish backbone functions through hiring of a Social Media Coordinator and Conference Coordinator; b) Build Community Presence through social media and face-to-face meetings to identify desired outcomes and interventions; c) Hold a Year 1 Meeting to prioritize outcomes and interventions and to establish a shared research agenda among stakeholders; d) Engage in a scan of the literature to support identified interventions and outcome measures; e) Through a Year 2 conference with stakeholders, develop an engagement plan to include a governance structure of a Community Council to make decisions regarding future PCOR/CER, an ethical review plan to specify how compensation and involvement of stakeholders should occur in future research, and to identify the process and metric for evaluating ‘engagement’.
Outcomes/Outputs: This project will result in a Community Council (CC) formed of self-advocate adults with autism and their families; the CC will have a governance structure, a plan for measuring engagement, and will have established priorities for outcomes and interventions of a future PCOR/CER. These outputs will occur through social media and face-to-face conferences to ensure that the community who provided input initially are included in the review of the outcomes.
Patient Stakeholder Engagement: The entire project involves engagement at every step, as reflected by the self-advocate autistic adult Project Team, to the support of engaged stakeholders in yearly meetings through financial stipends. The engagement occurs through preferred social media formats, as well as traditional face-to-face meetings, to establish a cohesive Community Council group of advocates to engage in future PCOR/CER.
Project Resource: Engagement and Compensation Guide