Background: Individuals with disabilities living in rural settings, and particularly autistics and their parents/caregivers, face greater socioeconomic and health disparities and are less likely to receive medical, educational, and support services. Patient-centered outcome research and comparative clinical effectiveness research (PCOR/CER) are critical to address healthcare and health outcome disparities in this context. Recruiting and retaining caregivers and autistic adults as research partners is challenging as they are often stretched beyond capacity by the lack of supports. Researchers have limited autism-informed engagement skills and often perpetuate ableism—a form of discrimination—in their language and research, adding to autistic adults’ lack of trust and motivation to engage as research partners. While research training to promote patient-centered research exists, it is not accessible to autistics and there is no autism-specific training for researchers.
Proposed Solution to the Problem/Objectives: Because feeling undervalued and removed from the research process is a barrier to engagement for many stakeholders, the project team proposes the following objectives to build capacity for PCOR/CER:
- Build trust with autistics and their families by listening to their concerns and expectations for research partnerships
- Identify accessible and inclusive practices for sustained research partnership
- Co-create autism-informed and accessible onboarding research training tools for autistic and non-autistic partners
Activities: In Phase 1 of the project, parents/caregivers and autistic adults will share their concerns, expectations, and ideas to promote sustainable engagement in autism research through focus group activities.
In Phase 2, they will work in a leadership role along researchers in small focus groups and as part of multistakeholder teams. They will review existing PCOR/CER research training and guidelines for the inclusion of autistics as co-researchers. They will identify important content and design autism-informed research training for researchers and other non-autistic partners. Accessible training materials for autistic research partners will also be created.
Projected Outcomes and Outputs: Through this sustained effort, the project team will integrate and improve the collaboration strategies valued by the rural autism community to maintain conviviality and motivation in the research partnership effort. The collaborative strategies developed during the project along with the autism-informed research training tools will increase the team’s capacity to engage the autism community in PCOR/CER. Training tools, collaboration strategies and lessons learned will be available to other autism research communities.
This project will allow the research team to train other autism research partners including faculty and students across the state of Vermont and beyond and build PCOR/CER capacity to resolve the gridlock observed across the state in developing autism research based on the autism-community's priorities.
Short-term outcomes during the project period include:
Develop sustainable PCOR/CER partnerships with a greater number of autistics and families.
Create autistic-centered PCOR/CER partnership trainings.
Medium-term outcomes (0-2 years post-project period) include:
Share lessons learned from a co-creation process and share autistic-centered research trainings beyond the community.
Expand the number of autistic-centered research teams in Vermont and beyond.
Long-term outcomes (3+ years post-project period) include:
Unlock the current gridlock in Vermont and beyond and increase the number of research projects conducted in collaboration with the autism community to address their priorities.
Patient and Stakeholder Engagement Plan: The UVM Autism Collaborative includes autistics and parents providing leadership and guidance with other team members as equal partners from the very first step on the idea development for this project through its completion. Community partners will help identify stakeholders to participate in the project and consult on engagement strategies.
Project Collaborators: Vermont Family Network, Green Mountain Self-Advocates