Development of the Intercultural Diabetes Online Community Research Council: Codesign and Social Media Processes

Deborah A. Greenwood, Michelle L. Litchman, Ashley H. Ng, Perry M. Gee, Heather M. Young, Mila Ferrer, Jimmy Ferrer, Chris E. Memering, Barbara Eichorst, Renza Scibilia, Lisa M. S. Miller

This case study describes the formation of the Intercultural Diabetes Online Community Research council (iDOCr) and community advisory board (CAB) to engage the diabetes community and researchers in the codesign of community-based participatory research (CBPR) to examine online peer support in type 2 diabetes (T2D). Social media engagement was the foundation for CBPR knowledge generation. During the project, the iDOCr council and CAB (n = 27) met quarterly via video conferencing and three times in person during national diabetes meetings. Data from four Twitter chats were used to explore the usefulness and utility of Twitter data to learn about concerns and priorities of the diabetes online community (DOC) and supported the evolution of iDOCr, the development of a research question and the design of a CBPR study. The iDOCr project (1) created a diverse CAB; (2) raised awareness of iDOCr and online peer support, which resulted in support and trust from key opinion leaders within the DOC to enable future partnerships for research and funding; (3) engaged with English- and Spanish-speaking DOC users through social media; and (4) designed a CBPR study supported by Twitter chat data analyses. Integrating the voice of people with diabetes (PWD) and the DOC in designing CBPR, through use of a CAB, ensures the most important and relevant research questions are asked. Additional research focused on online peer support may increase health care provider confidence in referring PWD to this low-cost and relatively accessible resource with the potential power to advance health.