A University of Vermont team focused on health care and research related to autism has received two awards totaling $350,000, through the Eugene Washington PCORI Engagement Awards program.
The program is an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support outreach with the autism community around Vermont to empower autistic youth, adults and their families as leaders in the research needed to address their current healthcare challenges.
University of Vermont Senior Vice President and Provost Patricia Prelock and Emily Coderre, Assistant Professor in Communication Sciences at the University of Vermont, will lead the two outreach projects.
“We are very excited to be partnering with families, autistic youth and adults, and healthcare providers so they can help lead our research focus and guide our next steps for ensuring effective transition from pediatric to adult healthcare services,” Prelock said.
The two projects will make possible year-long outreach efforts to collaborate with the autism community in Vermont and organizations that represent diverse stakeholders including the Vermont Family Network, Green Mountain Self-Advocates and All Brains Belong VT. The first award will ask the autism community what researchers need to know and do to welcome and empower them as equal members on research projects. This will lead to the creation of training for research teams in Vermont and beyond. The second project will ask autistic youths and adults, along with their caregivers and healthcare providers, about research gaps and priorities when it comes to supporting children and families as they transition from pediatric to adult services and supports.
Increasingly more Vermonters identify as autistic, being on the autism spectrum or being neurodivergent and they need specific supports in healthcare, education, and employment. Vermont’s largely rural setting provides additional challenges for autistic individuals seeking to engage fully with the communities of their choice.
According to Liliane Savard, co-chair of the UVM Autism Collaborative and co-investigator on both awards,
“There needs to be a shift where autistic youth and adults guide how to best support them in being healthy and full members of society. Vermont will be a healthier community for all when we embrace diverse ways of being and thinking in addressing our societal challenges.”
The UVM Autism Collaborative is a group of autistics, families, caregivers, researchers, and clinicians working together to improve the quality of life for autistic people. The Collaborative focuses on research involving the autistic community as stakeholders and contributors.
“There is often a huge disconnect between autism-related research and the actual needs of the autistic community,” says Dr. Melissa Houser, autistic physician and Executive Director of All Brains Belong VT. “The UVM Autism Collaborative is committed to learning from the lived experiences of autistic people so as to improve our quality of life.”
The UVM Autism Collaborative is a joint project of the UVM College of Nursing and Health Sciences, and UVM Center on Disability & Community Inclusion (CDCI) in the College of Education and Social Services. They also partner with the University of Vermont Medical Center.
Support for the UVM Autism Collaborative is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results. Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities, and organizations to participate in, share, and use patient-centered research.
According to Greg Martin, PCORI’s Acting Chief Engagement and Dissemination Officer, “This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in CER and develop partnerships and infrastructure to disseminate PCORI-funded research results. We look forward to working with the UVM Autism Collaborative throughout the course of their project.”
The UVM Autism Collaborative was approved for funding through a highly competitive review process. Applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.
PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
