Creating Community Driven, Personalized Health Maps for Patients with Diabetes

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Project Abstract/Summary: This NLM R01 proposal aims to develop and test a personal health library platform for patients with diabetes and prediabetes, harnessing both personal health and healthcare data (e.g., medication lists, upcoming appointments, self-tracking of diet and blood sugars) and location-based mapped data about neighborhood health resources (e.g., community reviews about the quality of grocery stores and parks). Diabetes and prediabetes patients have substantial needs for tracking and accessing health and healthcare information that are poorly met by existing platforms that largely operate in silos. Furthermore, existing digital health tools have not utilized participatory design approaches and have low uptake among specific subgroups, such as racial/ethnic minority and lower income populations. In this project, we will use design science to create and evaluate a new personal health library platform to strengthen and improve the ways in which low income individuals and communities of color access and interact with personal health data that better reflect their needs and interests. Specifically, we propose to create a new platform that enables patients with diabetes or prediabetes to import their personal health data to a mapping platform, in order to have access to store and view both private and public views of health- promoting and health-inhibiting community factors in their own neighborhood. This new platform will be titled: “Mapping to Amplify the Vitality of Engaged Neighborhoods,” or MAVEN. In Aim 1, we will use inductive observational methods to follow community leaders/health advocates and patients with either diabetes or prediabetes to understand existing health and healthcare journeys and map existing resources in their neighborhoods. We will recruit patients and community-based organization leaders from 3 San Francisco neighborhoods with the highest prevalence of diabetes and pre-diabetes, which also correspond with existing San Francisco Health Network clinics in our healthcare system. In Aim 2, we will recruit a second sample of individuals to complete user-centered design methods (e.g., card-sorting and thinkaloud interviews) to prioritize and test prototypes of data elements within the new MAVEN personal health library platform. In Aim 3, we will conduct real-world usability testing of a functional version of the MAVEN platform to explore its acceptability and usability in everyday life. Because we will engage racially/ethnically and socioeconomically diverse patients in this project, we will ensure that the MAVEN personal health library platform is relevant for patients with varying levels of health literacy and technology proficiency. In addition, because we will engage community health advocates and public healthcare system leaders, our findings will have more direct implications for implementation and dissemination.