JMIR Publications

ABSTRACT

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 March 2025, we recruited and interviewed 19 individuals (68% female, 47% Black, 26% Hispanic, 11% indigenous) for 4 focus groups. Over 80% had access to smart devices. Participants self-reported A1c mean (sd) of 6.77 (1.93). Almost half (48%) of participants completed some college. Frequently occurring themes (f > 30) obtained from coding contextual interviews were: desired app attributes like customization, mental impact, informal support, diabetes education, barriers, 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 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.