Poster in Urban Affairs Conference

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Poster: Co-Designing Data Governance Policies for a Neighborhood-Based Digital Health Intervention

Lauren Forbes, ..Ming Tang. Co-Designing Data Governance Policies for a Neighborhood-Based Digital Health Intervention. INTERNATIONAL CONFERENCE ON URBAN AFFAIRS 2026.

Digital health innovations (DHI) present important opportunities to improve individual health outcomes and community well-being; however, they are typically developed by private sector innovators who prioritize the novelty of innovation and data-driven value creation over achieving health equity. Resultantly, Black lived experiences and perceptions of digital innovations are regularly overlooked in digital innovation development. This exclusion, exacerbated by the digital divide and place-based structural barriers, perpetuates racialized health inequities and widespread institutional mistrust among Black communities. In our study, we address these complex challenges through the question, “What are the digital data governance preferences of Black communities that should inform DHI development”? This question is the first of a broader study that seeks to generate a gamified DHI using “digital twinning” (3D, GIS based city modeling with virtual reality) for health outcomes improvement by integrating these community-driven data governance policies and fostering institution trust. We use mixed methods consisting of a longitudinal survey, listening sessions and focus groups, demonstration sessions, co-design hubs, and user-contributed Ecological Momentary Assessment (EMA) data to answer our questions and to test community perceptions of and experiences using the gamified DHI. By the time of this presentation, we anticipate having findings from the first survey, listening sessions, and focus groups along with preliminary community-driven data governance policies and a draft game design architecture. This interdisciplinary study represents a novel opportunity to not only improve health outcomes within marginalized communities, but also to repair institutional mistrust and foster digital literacy and agency through the co-design of digital data governance policies. 

More info on the project is available at THRED: Technology for Health, Resilience, Equity , and Decision-Making.