Community engagement is important for developing research involving patients with mental illness, and funding agencies are increasingly requiring such engagement. However, many researchers are unable to pursue advisory boards with people with lived experience with mental illness, including psychotic disorders, due to financial and time constraints on the researchers and individuals who prefer limited participation burdens.
To address these gaps, McLean Hospital's Division of Psychotic Disorders created a standing research advisory board as a shared resource for researchers, that they can utilize for feedback at any phase of a research project. This novel model was designed to provide a flexible alternative to research boards created for single studies, in which board members and researchers can connect to improve the quality of their research and align with the needs of the community their research aims to serve.
A new paper published January 11th in Psychiatric Services describes five steps McLean took to form its research advisory board that the authors hope can serve as a guide for other mental illness researchers looking to engage the patient community. They include:
- Consult community members
- Define goals and scope
- Select board members
- Plan board operations
- Consider board sustainability
The authors also collected feedback from researchers on their experience with McLean's research advisory board, with nine of out 10 respondents saying they planned to adjust their research based on the board's feedback. Their paper also offers tips on avoiding potential conflicts of interest and details future research goals of collecting long-term outcomes data on the effectiveness of the boards.
"Engaging people with lived experience with mental illness when developing research is crucial, yet many researchers do not regularly seek feedback from the community when creating and executing their studies," said lead study author Julie M. McCarthy, PhD, a staff psychologist in the Division of Psychotic Disorders at McLean Hospital. "Developing a standing research advisory board as a shared resource will stand to benefit future research efforts and reduce some of the impractical considerations around creating an advisory board for a single study."
