Amsterdam hospitals will share data

The initiative of the three Amsterdam hospitals stems from a broader collaboration with the University of Amsterdam, Vrije Universiteit Amsterdam, Municipality of Amsterdam, the Amsterdam Economic Board and Philips. In addition, the hospitals are working closely with Amsterdam AI, the Amsterdam artificial intelligence partnership, and Health-RI, which is working to create a nationwide integrated health data infrastructure for research, policy and innovation.
With this better and faster exchange of healthcare data, HDSA facilitates scientific research on health, better medical understanding of how people can stay healthy for long periods of time, personalized prevention and treatment of diseases. The collaboration is a first step in connecting to (a yet to be built) national infrastructure from the Integral Care Agreement (IZA) and a European collaboration through the European Health Data Space (EHDS).

Trust for healthcare data
Through HDSA, the three hospitals are committing to the creation of a so-called joint ‘trust’ for healthcare data. The data sharing platform provides a place where researchers can reuse existing pseudonymized data from regional healthcare providers. HDSA reviews the request, monitors the reuse and, when outputting healthcare data, monitors compliance with reuse agreements.
Ymke Fokma, member of the Board of Directors of the Netherlands Cancer Institute, on the collaboration: “The lack of uniform and necessary legal, ethical and privacy frameworks and applications of standards, made (re)use of healthcare data from different healthcare providers difficult. Even if patients gave permission, the data was not readily available. As a result, research simply could not be done or it took years and years. HDSA makes it possible to (re)use healthcare data securely. This allows us to improve care, save costs, safeguard patient privacy and work more efficiently. This is of great importance in times of ever-increasing healthcare costs, an aging population and staff shortages.”

Sharing existing healthcare data in practice
To build a better healthcare data infrastructure in the Amsterdam region, the consortium will gain experience in sharing existing healthcare data in seven real-world situations. The Stroke Network Groot-Amsterdam (SNGA) manages strokes, based on insights from patient data and coordinates stroke treatment with healthcare providers in the region. As a result, the ambulance transports stroke patients as quickly as possible to the hospital that has appropriate treatment facilities and sufficient capacity.
The ‘AAN’ project will share existing care data of cancer patients with relevant healthcare providers to treat patients more effectively. This should ensure that cancer patients receive only treatments that are expected to work for them so they’d not be burdened with strenuous, but unfavorable treatments. This data-driven care also prevents medication being wasted.

Future cooperation for common good
Health Data Space Amsterdam continues to build on the long-standing collaboration between knowledge institutes and healthcare providers in the Amsterdam region. For example, 12 hospitals in the Amsterdam metropolitan area, the Public Health Service, more than 450 general practitioners and many pharmacies are exploring options to join HDSA in the near future. This number will continue to increase over the next few years.
About Health Data Space Amsterdam

HDSA is a collaboration between Amsterdam UMC, OLVG, the Netherlands Cancer Institute, University of Amsterdam, Vrije Universiteit Amsterdam, Municipality of Amsterdam and Philips, initiated by the Amsterdam Economic Board. HDSA also works closely with Amsterdam AI and Health-RI.