Health Data Governance: Between Handling and Handing Data

Sociotechs

Health data governance should ensure protection for individuals' health data against violations, while enabling the smooth functioning of healthcare systems. Doing so involves a complex set of stakeholders, opening multiple questions which directly affect the way our health data are collected, stored and managed. Today we sit with Dragana Paparova to unpack such questions, learning about issues and practices at the heart of health data governance.

Dragana Paparova is a postdoctoral researcher in Information Systems at the Department of Informatics, University of Oslo. Her research is centred on the production, sharing and usage of patient (generated) healthcare data across stakeholders and organisational boundaries. She holds a PhD from University of Agder, and her paper "Data Hierarchies: The Emergence of an Industrial Data Ecosystem", coauthored with Daniel S. Svendsrud, was runner-up for Best Student Paper Award at ICIS 2023.

Resources:

Paparova, D. (2024). Data spaces and the (trans) formations of data innovation and governance. Doctoral dissertations at University of Agder, https://uia.brage.unit.no/uia-xmlui/bitstream/handle/11250/3112105/Dissertation.pdf?sequence=4

Paparova, D., Aanestad, M., Vassilakopoulou, P., & Bahus, M. K. (2023). Data governance spaces: the case of a national digital service for personal health data. Information and Organization, 33(1), https://www.sciencedirect.com/science/article/pii/S1471772723000052

Svendsrud, D. S., & Paparova, D. (2023). Data Hierarchies: The Emergence of an Industrial Data Ecosystem. International Conference of Information Systems (2023) Proceedings, https://aisel.aisnet.org/icis2023/diginnoventren/diginnoventren/14.