Understanding how data sharing occurs in the health sector

To generate insights and value, health data from one source is often combined with data from other sources. For example, health data can be shared with external partners, such as researchers, governmental health bodies or organisations who may use the data to create new insights to inform personalised healthcare or innovative treatments.

These data sharing relationships can take on a number of different forms:

• Openly licensed: Third parties can access the data without having to be known to the data provider, or to enter into a specific agreement, other than having to follow open data licences or terms of use requirements.

• Non-openly licensed: Subscription model to accessing data under established terms of use.

• Alliances and networks: Data partners agree to make data available in standardised formats that can be used by everyone in the network. Common infrastructure may be used to pool data, and a group-level data sharing agreement may be put in place that describes how all partner members contribute data and how they access it.

• Research hubs: Data may only be available in limited formats, or secured on specific platforms where analysis can occur, but data cannot be removed from the platform. These relationships often require a greater level of oversight of the security measures in place by each partner to ensure data is protected.

• 1:1 partnerships: Enables two organisations to collaborate on a specific project, for a specific period of time, working together on well-defined datasets.

• Transactional: Acquiring data from external sources in return for a payment for primary data use to optimise healthcare delivery.