Digital Health Tool for Preventing Blindness from Diabetic Retinopathy: Protocol for a Qualitative Study (Preprint)

BACKGROUND Diabetic retinopathy (DR), a leading cause of preventable blindness among working-aged adults, leads to worse health outcomes among Black, Latine, and low-income individuals in comparison to other ethnic, racial, and socioeconomic groups in the United States. OBJECTIVE We aim to engage community members directly to identify barriers and facilitators of DR screening and co-design a digital health tool that is accessible, user-friendly, and community responsive. METHODS We conducted focus groups with individuals from the Greater New Haven, Connecticut area age 18 years and older and diagnosed with diabetes to (1) conduct a comprehensive disease-management needs assessment and (2) inform development of a community-responsive digital health tool to optimize DR education and to increase access to DR screening in high-risk populations. We transcribed the focus group interviews, used rapid qualitative analysis to generate themes, and completed affinity mapping to identify content and features for a digital health tool for preventing blindness from diabetic retinopathy. RESULTS As of December 2023, we completed 4 focus groups with 19 participants who have a diagnosis of diabetes. CONCLUSIONS We anticipate that the study will characterize the experiences of people living with a chronic disease such as diabetes. Using a community led approach, we will analyze the information which will generate insights regarding the key benefits that are most important for the creation of a digital health tool.