What Is a Community Advisory Board (CAB) and Why Is It Important?
A community advisory board (CAB) serves as a platform for collaboration between researchers and community members, typically reflecting the demographics and interests of the community involved. CABs provide input, guidance, and insight to research projects, ensuring that the community’s perspectives and priorities are incorporated into the research process (Newman et al., 2011).
Historically, there has been a notable gap in including the voices of the autism community in research endeavors. Autistic individuals, along with their families, have expressed dissatisfaction with the lack of involvement in setting research priorities, poor communication about research opportunities, and the use of demeaning language about autistic people in scientific works (Gowen et al., 2019; Keating, 2021; Pellicano et al., 2014).
Establishing a CAB will help to bridge the gap between researchers and the autism community by providing a platform for meaningful engagement, collaboration, and trust-building between researchers and community members. By incorporating the perspectives and priorities of the autism community into research initiatives, CABs represent a promising approach to ensure that research efforts are relevant, impactful, and respectful of community needs.
The ASAP Lab CAB – Composition and Purpose
The CAB’s primary purpose is to offer guidance, feedback, and oversight on various aspects of the lab, including our research processes, lab environment, and community outreach initiatives. While the CAB will be invited to participate in select projects and stages where their input is most valuable, its level of involvement may vary depending on project specifics and community preferences. Ultimately, the CAB will serve as a valuable resource, contributing to the development and enhancement of both new and existing projects.
The CAB will be composed of 9-12 members, including autistic adults, parents of autistic children, clinicians, autism organization members, and policy makers (see visual above). We also aim to recruit individuals with diverse identities, including those with various levels of support needs, race/ethnicity, cultural backgrounds, gender identity, educational backgrounds, and geographical regions, in order to reflect the diverse perspectives and needs of the autism community.
Our Process of the CAB development
In February 2023, we began our process with a thorough literature review of previous work related to community advisory boards and participatory research. Following this, our lab formed a planning committee consisting of both autistic and non-autistic lab members at various stages of their training and experiences with community engagement, as we believed it was crucial to include autistic voices from the very beginning. Throughout 2023, the planning committee laid the groundwork by creating materials and drafting the initial procedures and structures for the CAB, referring to an dtaking cues from the empirical literature where possible.
To enhance representation and acceptability of our materials, we sought advice from a Steering Committee (SC). Formed in December 2023, the SC consisted of four community members: an autistic adult, a parent of autistic children, a clinician specializing in autism services, and a support provider from an autism-focused non-profit organization. Our objective was to engage the SC in consultations regarding the materials we developed and solicit their input on the composition and operation of the CAB. From December 2023 to May 2024, the SC participated in three meetings where they provided feedback on materials and procedures drafted by the ASAP Lab. Throughout this process, we frequently revisited the literature review to further guide our work.
This summer (May – August 2024), we are transitioning from our Steering Committee to establishing a Community Advisory Board (CAB). As part of this transition, we’ll be turning the CAB initiative into a research project to better understand its processes and impact. Our goal is to collect regular feedback from CAB members about their experiences, ensuring that the CAB effectively meets its goals and addresses the needs of the community, in line with our commitment to evidence-based values. Currently, we are finalizing our research proposal and preparing to recruit CAB members. Stay tuned for updates as we move forward with this exciting new phase!