UC Davis MIND Institute seeks research partners in the community

The UC Davis MIND Institute is inviting community members to help shape its priorities and care for people with autism and other neurodevelopmental conditions. PAIR, the Partnership for Inclusive Research, is a great fit for autistic individuals, advocates and people with developmental disabilities. Caregivers, educators and policy makers, among others, are also ideal partners.

PAIR is not a research study. It is a way for people with lived experience to partner with the MIND Institute's researchers and healthcare providers.

"Team members are partners, not participants," explained MIND Institute Director Aubyn Stahmer, a professor in the Department of Psychiatry and Behavioral Sciences. "Our goal is to make sure the research and work we do at the MIND Institute are guided by what truly matters to people with neurodevelopmental disabilities and their families."

Lasting partnerships

Community partnerships are not new to the MIND Institute. In fact, they have been an important part of the institute's work for more than two decades. These relationships have often been about a specific program, event or study. The new program, however, will span nearly all activities at the institute and establish ongoing, two-way communication.

"PAIR is designed to make it easy for community members to connect and stay involved over time and with different projects," said Sarah Vejnoska, a postdoctoral scholar at the MIND Institute who is helping to organize the new effort. "Over time, we hope this approach will make collaboration a natural and lasting part of everything we do."

What does it mean to join PAIR?

Partners will take part in a variety of activities, including:

• Meetings
• Discussion groups
• Workshops
• Surveys

They may be asked to share their feedback to help improve MIND Institute programs and research studies. They will have the opportunity to see how their input impacts the work of the institute.

"As a researcher, every visit with community members is a chance for me to listen, learn and better understand what matters most to them," said Angela John Thurman, a professor in the Department of Psychiatry and Behavioral Sciences and a PAIR organizer. "We want to make sure community voices guide our work and that we learn through meaningful partnerships and real connections."

Thurman notes that the partnerships will help to shape the way teams design studies and how they communicate with research participants. "Working with families and the community is the best part of my job. It motivates me to do even more," Thurman said.

PAIR plans to meet about three times per year. Partners can take part in person or online. There will also be other opportunities to engage with the MIND Institute. Partners will be invited to take part in training sessions in early June.

Signing up takes just a few minutes. There is no commitment to ongoing involvement. Partners can choose how they would like to be involved and may say no to opportunities at any time. There is no cost to join.

Sign up for PAIR

More effective research and care

Community members have valuable expertise that researchers and healthcare providers cannot gain from data alone.

"We have been working in partnerships on many projects for more than two decades, and I have seen how much better our research questions are and how much more the community values the work," Stahmer said.

Working with the input of community members helps researchers design studies that are more accessible and inclusive. It also helps them develop programs that are important and useful to families.

"Over the years, I have attended events where I have connected with families, self-advocates and professionals, and these experiences have helped me better understand what is most meaningful and impactful to the community," explained Brittani Phillips, a project manager at the MIND Institute who also works on the PAIR project. "I'm especially excited about PAIR because it will allow us to bring these voices directly into the MIND Institute to inform and strengthen the work we do."

PAIR leaders hope the team will reflect the diversity of Sacramento and Northern California, especially reaching people who may not have felt welcome in research spaces.

"We will be strongest together if we can include people with many different experiences so that we learn what different communities need," Stahmer said.

PAIR highlights

• Partners are people with neurodevelopmental disabilities or those who support people with conditions such as autism, ADHD, 22q, intellectual disabilities, fragile X or Down syndrome.
• The group will meet three times per year to learn about things happening at the MIND Institute and offer feedback.
• Partners may be asked to work on other projects if they are willing.
• Signing up does not mean you are committing to anything. You can decline at any time.
• Partners sign up through an online form.
• The first training sessions will take place in early June.
• Questions? Email [email protected].

Sign up for PAIR