Digital Health Tool for Preventing Blindness From Diabetic Retinopathy: Protocol for a Qualitative Study

Abstract

Background: Diabetic retinopathy (DR), a leading cause of preventable blindness among working-age adults, leads to worse health outcomes among Black, Latine, and individuals with lower income 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, aged 18 years or older, and diagnosed with diabetes to (1) conduct a comprehensive disease-management needs assessment and (2) inform the 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 DR.

Results: We recruited and interviewed 19 individuals (13/19, 68% female; 9/19, 47% Black; 5/19, 26% Hispanic; 2/19, 11% Native American or Alaska Native) for 4 focus groups. Over 94% (18/19) had access to smart devices other than a computer. Participants self-reported mean hemoglobin A_1c of 6.77 (SD 1.93). Approximately 58% (11/19) of the participants completed some college. Frequently occurring themes (>30) obtained from coding contextual interviews were desired app attributes such as options for customization, covering topics such as, the mental impact of living with diabetes, informal support (eg, peer support), diabetes education, barriers to controlling blood sugar and maintenance of health, dietary guidance, and notifications. We created high-fidelity wireframes incorporating key features. Next, we will iteratively design a prototype with community feedback.

Conclusions: We anticipate that this study will characterize the experiences of people living with diabetes. Using a community-led approach,we will continue to analyze the data that will generate insights regarding the key features, content, and benefits that are most important for the creation of a digital health tool for DR prevention.

International registered report identifier (irrid): DERR1-10.2196/65894.

Keywords: DM; blindness; community engagement; community-led; diabetes mellitus; diabetic retinopathy; digital health tool; digital tool; mHealth; mobile apps; mobile health; preventable blindness; prevention; qualitative study; user-centered design.