Data driven ecosystems for health and prevention: a shared decision-making model for local data governance.
Authors: Van Schyndel Cato , Hannes Karin 
Published: January 2024

Summary: As our healthcare system is in transition towards a more personalized preventive healthcare approach, enabled by the digital transformation, we aim to design a harmonized data driven population health approach, shared by local healthcare actors and wherein citizens have trust through a local data governance.
Background: Our healthcare system is in transition towards a more personalized preventive healthcare approach, which is enabled by the digital transformation. To enable this transition, there is a need for a harmonized data driven population health approach, shared by local healthcare actors. To create this based on citizen-generated data, it is crucial that citizens have trust in sharing their data, which can be enabled by a local data governance. The trade-off or interaction between local governance of these data and cashing in on health gains based on that data should thus be investigated for all stakeholders in the quadruple helix (citizens, healthcare providers, governments, and companies).
Objectives: The aim of this research was to consult primary care zones, general practitioners, pharmacists, and local governments in Flanders on their current way of working, more specifically the use of data in their healthcare prevention strategy. We aimed to investigate what data they are already using, the data sources and the reason of data use. We also examined the current gaps in their data strategy and what they wanted to improve.
Design: The project has been externally funded by VLOCA and EMPOWERCARE Interreg 2 Seas. Online consultations were conducted with in total 16 participants from a general practitioner center, 3 primary care zones in Flanders, the overarching body of the primary care zones, a mutuality, a pharmacy network and 2 local governments. In addition, we conducted an online focus group with 25 participants within the healthcare sector, with the participants partially overlapping with the participants from the online consultations.
Results: The online consultations and focus group with participants from the primary healthcare sector in Flanders give an insight on the current data driven approaches in healthcare prevention. Participants indicate data is valuable in healthcare prevention, such as targeted interventions and population health management. Some participants are already working on a data driven approach in healthcare prevention. The majority, however, indicates that there is a lack on real world data relating to lifestyle.
Conclusion: The present study gives an insight on the current use of data in healthcare prevention in Flanders. The current research informs us there is a need for a harmonized healthcare data driven approach. Moreover, it provides us insights on the trust-relationship between citizens and data, which is a necessity when data driven approaches are implemented. As next steps, the results of these consultations will be combined in an open data architecture on prevention and lifestyle. Moreover, we will further investigate how this research relates to the international context.