Sisters impacting the SISTER diabetes study: partnering with a Patient Advisory Group across the research continuum

Patient-engaged research is essential for ensuring that research prioritizes patients’ needs and perspectives. Despite the known value of and need for engaging historically marginalized patient groups in research, there are limited examples of their engagement and across the research continuum.

This study describes ways that a Patient Advisory Group (PAG) of African American women with type 2 diabetes were engaged in the design, implementation, and dissemination of a randomized clinical trial (RCT) and the influence of their engagement.

The PAG was established in 2020 as part of the (Sisters Inspiring Sisters to Engage in Relevant Diabetes Self-Care) SISTER Diabetes Study. A pragmatic, non-systematic approach was used for documenting engagement, including research team review of meeting notes and progress reports. Engagement activities were categorized according to research phase and summarized.

The PAG actively contributed across all phases of the research process. During study design, members co-developed recruitment materials and informed the selection of culturally relevant RCT comparator group content. During implementation PAG members supported recruitment through community engagement, co-refining intervention session topics, and guiding development of COVID-19 safety protocols. During dissemination, PAG members contributed to data interpretation and served as manuscript co-authors.

The PAG’s involvement across the research continuum of the SISTER Diabetes Study demonstrated many opportunities to leverage their experience and expertise. The value and level of their engagement demonstrate the importance of patient engagement across different research phases, which is particularly salient for historically marginalized patient groups.