This project focuses on how underrepresented and marginalised communities experience the use of their health data in national systems designed to support health care, research, innovation, and policy-making. It examines how data sharing, reuse, and linkage impact their lives, with an emphasis on privacy and data protection. By adopting a bottom-up and human-centric approach, the study aims to bring the voices of these communities to the forefront, fostering
greater trust and accountability in health data systems.
The Netherlands’ Health-RI initiative serves as a key case study, offering insights into efforts to build a coordinated national health data infrastructure. While Health-RI aims to reuse health data for the public good, its largely top-down approach often excludes marginalised groups. This project seeks to address this gap by adopting an approach that prioritises inclusion, social justice, and diverse perspectives in the design and governance of health data infrastructures.
Ultimately, the project aims to bring together community members—whose data are central to these systems—and the stakeholders developing them. By encouraging collaboration from the beginning, the research aspires to create health data systems that are equitable, trustworthy, and responsive to the needs of all, ensuring that these infrastructures serve society as a whole.
Team members
Sam Muller (UMCU)
Luana Poliseli (WUR)
Birendra Singh (WUR)
Abigail Nieves Delgado (UU)