Enormous potential for development of innovative health solutions and improved patient outcomes exist if access to real-world health data can be enabled.
However, wide-spread sharing or access to this and other health data, between healthcare stakeholders (e.g. healthcare organizations, researchers etc), is highly limited due to concerns about consent, ownership, data protection and interoperability. Federated networks for health data, proposed here, are being developed and implemented in an attempt to address legacy data sharing barriers. Federated networks enable data access, as opposed to data sharing, pooling or transfer, thus overcoming the described barriers whilst also complying with policies and regulations that were designed to facilitate safe access and use of health data. Once a federated network is established, the orchestration of four core elements enables data contributors and data consumers to work effectively together, namely orchestration of cybersecurity, infrastructure, data management and governance.
Drawing on implementation experience from the World Economic Forum Breaking Barriers to Health Data project, the Personal Health Train and Vantage6, with industry insights from Microsoft and DNV, we discuss values, challenges and opportunities for safe, sustainable, and scalable operation of federated networks.