(PS12-29) Integrating a Parent Advisory Board into Clinical Research with Parents and Children

Community-based participatory research (CBPR) is a methodology in which researchers partner with community members to design, implement, and disseminate research related to a specific community. CBPR aims to incorporate the perspectives of community stakeholders and those with lived experiences of the phenomenon of interest to minimize harm and improve validity, acceptability, and impact of research. Although the value of CBPR is widely recognized, logistical challenges can present barriers such as increasing the research timeline which can reduce uptake of CBPR methods. CBPR methods can be particularly challenging to enact in clinical research settings, where increased protections for patient privacy and informed consent warrant additional consideration. In this presentation, we will discuss the process of incorporating CBPR principles into a research protocol to evaluate clinical services in an outpatient clinic. We aim to provide a case study and lessons learned to assist clinical scientists in using CBPR methods in outpatient settings. 

Clinically, our team provides parenting groups and family therapy through a large metropolitan academic medical center in New England. To understand how our parenting groups and family therapy services impact parents and children, we developed a two-phased research plan with principles of CBPR incorporated. Our first phase involved developing a parent advisory board who could provide input on the types of measures, recruitment strategies, etc. that we could use to evaluate our clinical services with future patients. Additionally, given our interest in understanding whether our clinical services are associated with changes in biomarkers of stress, the parent advisory board was designed to seek parents’ input on the collection of biospecimens. As former patients in our clinical program themselves, parents are key stakeholders and have valuable perspectives that can improve the experiences of future parents and children who will be recruited in our research. In the second phase of our research plan, input from the parent advisory board is incorporated into the research protocol (e.g., questionnaires, recruitment strategy, biospecimen collection). Upon input from the parent advisory board, this research protocol will be used with future parents and children participating in our services.   

In this presentation, we will share lessons learned related to the development and implementation of a parent advisory board in an outpatient setting. Regarding the development of the advisory board, we will discuss key considerations including informed consent, IRB procedures, recruitment, and compensation of parent advisors. Regarding implementation, we will share insights from our advisory board meetings, including tips for meeting agendas, group norms, and engaging with parent advisors ethically and humanely. Finally, we will present feedback from our parent advisors on their experiences and their suggestions for future CBPR-inspired clinical research.