Project Summary

Background: The perspective of autistic Black, Indigenous, and other People of Color (BIPOC) is essential for comparative effectiveness research (CER) and patient-centered outcomes research (PCOR), but BIPOC autistic individuals are rarely included as expert advisors. There is an urgent need to expand the capacity of autism researchers to include BIPOC autistic adults on their projects as advisors, and similarly prepare BIPOC autistic adults to serve as advisors.

Proposed Solution to the Problem: This project will increase the capacity of 10 BIPOC autistic adults to serve as expert advisors on future CER/PCOR, and increase the capacity of autism researchers to include BIPOC autistic adults as advisors; the advisory board will be trained using an existing PCORI toolkit designed to train community members about research and adapted to address their unique needs and skills. The project will also generate a toolkit to educate researchers about how they can engage BIPOC autistic adults as advisors.

Objectives: 
Aim 1: Prepare BIPOC autistic adults to serve as expert advisors on CER/PCOR research grants and introduce them to autism researchers to facilitate future linkages and engagement.  

Objective 1: By August 2023, among the project’s advisory board members, increase knowledge about CER/PCOR, increase self-confidence about participating in research as expert advisors, and increase their network of researcher contacts. This objective will also result in training materials (i.e., a toolkit) for future CER/PCOR projects that seek to train autistic adults—or others with ID/D—about research. 

Aim 2: Create a toolkit for CER/PCOR researchers to engage BIPOC autistic adults as experts on their own research advisory boards.  

Objective 2: By August 2023, produce a written toolkit for researchers about how they can make their research endeavors accessible to BIPOC autistic adults to engage as expert advisors.

Activities: The project team will hold 12 virtual meetings to educate members about CER/PCOR using the existing PCORI Connecting Community to Research toolkit, and will identify outcomes that matter to BIPOC autistic individuals. Activities will also involve preparing a toolkit for researchers on autism and BIPOC, including information about the specific needs of BIPOC autistic adults related to CER/PCOR participation.

Projected Outcomes and Outputs: 

Short-term outcomes during the project period include: (a) advisory board members’ engagement in 12 Zoom meetings; (b) generating a toolkit for BIPOC autistic adults about CER/PCOR engagement; (c) generating a toolkit for researchers about engaging BIPOC autistic adults in CER/PCOR.

Medium-term outcomes (0-2 years post-project period) include: ≥50 percent of advisory board members becoming paid consultants on CER/PCOR projects within 12 months of project conclusion.

Long-term outcomes (3+ years post-project period) include: enriching the pool of autistic people who are ready to serve as experts on participatory projects.

Outputs and deliverables include: an established collaborative of BIPOC autistic stakeholders with expertise needed for CER/PCOR, a toolkit for BIPOC autistic adults interested in partnering with researchers, and a toolkit for researchers to engage BIPOC autistic adults.

Patient and Stakeholder Engagement Plan: The stakeholders involved are 10 BIPOC autistic adults. The board will attend 12 virtual meetings and will be engaged in the planning and execution of the project continuously. Autism researchers (n=15) will provide feedback on the toolkit for researchers, and will attend one of the final three virtual meetings.

Project Collaborators: The team is based at Boston Medical Center, Boston University, and the University of Texas. The Autistic Self-Advocacy Network (ASAN) will provide input.

Project Information

Megan Bair-Merritt, MD, MSCE
Emily F. Rothman, ScD
Boston Medical Center Corporation
$246,536

Key Dates

24 Months
2021

Tags

Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022