From health data infrastructure to community-driven ecosystem
This project explores how individuals from underrepresented and marginalised communities experience the reuse, sharing, and linkage of health data in national infrastructures supporting care, research, innovation, and policymaking. It investigates the impact of these systems on their lives, with a focus on privacy and data protection, adopting a bottom-up, human-centric approach to understand real-life consequences. The study aims to connect community insights with broader societal challenges and foster trust and accountability within health data ecosystems.
Using the Netherlands’ Health-RI initiative as a case study, the research examines efforts to develop a coordinated national health data infrastructure. While Health-RI prioritises data reuse for public benefit, its predominantly top-down approach risks overlooking the perspectives of marginalised groups. To address this, the study proposes an inclusive, social justice-oriented framework that integrates diverse lived experiences and knowledge systems into infrastructure design and governance. The project aspires to bridge the gap between marginalised individuals—whose data are central to these infrastructures—and the stakeholders designing and implementing them. By fostering early and meaningful collaboration, the research seeks to co-create data infrastructures that are equitable, trustworthy,and responsive to the needs of affected communities, embedding these platforms within a more inclusive societal ecosystem.
Funding: CUCO Sparking Grant (2024-2025).
Team:
Sam Muller (University Medical Center Utrecht)
Birendra Singh (Wageningen University & Research)
Luana Poliseli (University of Manchester)
Abigail Neves (Utrecht University).
