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. There are not many examples of how people from underrepresented groups help guide research. This paper describes how African American women with Type 2 diabetes helped shape the SISTER Diabetes Study. This study looked at whether adding motivational support to regular diabetes nutrition lessons could help African American women in the Southeast manage their diabetes better. The research team worked with four women who have diabetes. They were called the Patient Advisory Group, or PAG. These women helped design posters, flyers, and the website to help recruit people for the study. They chose pictures and words that showed what life is really like for African American women living with diabetes. They also shared their own stories to encourage others to join. Before the study started, the women helped test and improve the motivational activities. When COVID-19 made it hard to keep the study going, they worked with the team to make safety plans. Later, they helped share the results by deciding which findings mattered most and helping write the research papers. The partnership between the women and the research team is still strong today. The PAG continues to give advice and helps share the study results in this paper. Their involvement from start to finish shows how important it is to include people from underrepresented groups as real partners in conducting research.