Accessing data for research and analysis
We have recently published our latest Data Access Policy Update.
NHS data has immense value beyond the direct care of patients. It accelerates the discovery of new treatments by supporting research by academia and industry and helps the NHS to plan better and more effective services.
When data is used beyond the direct care of patients it needs stricter controls and conditions, which is why the Department of Health and Social Care is committed to moving towards ‘Data Access as Default’. This transition will be supported by the investment in Secure Data Environments across England.
The move to data access
The use of Secure Data Environments represents a strategic move away from a model of sharing NHS data to one that is based on access. The approach is endorsed by a wide range of experts, including being recommended by the Goldacre Review into how the efficient and safe use of health data for research and analysis can benefit patients and the healthcare sector.
Data Saves Lives, the data strategy for health and social care confirmed this approach with a commitment to the implementation of Secure Data Environments (SDEs) as the default way to access NHS data for research and other secondary uses.
Our policy guidelines provide more detail on what this commitment to Secure Data Environments means in practice. They include overarching expectations for how Secure Data Environments will be used, and the rules by which all platforms providing access to NHS data will need to comply.
Secure Data Environments have specific design features that allow approved users to access and analyse data without the data leaving the environment. This shift will improve data safety and security and will help build public confidence in how their data is stored and used for research. It will also provide researchers and analysts with quicker access to data and improved consistency of service to support the delivery of rapid innovations, enhancing patient care and improving health outcomes.
Clear policy and a coherent strategic narrative are critical in shaping this transition, and we are working with experts, patient representatives and members of the public to co-develop this. It is equally important we are transparent and describe this complex transition clearly to the public, which is why we have published a simple explainer on Secure Data Environments.
How has our policy thinking developed
Comprehensive and up to date Secure Data Environment policy will ensure that appropriate technology, processes and governance are upheld whenever NHS data is used for research or other secondary uses.
As Secure Data Environments are implemented, ongoing engagement with our stakeholders from across the sector has been invaluable in helping us to define and improve the work needed to deliver the strategy.
Following formal consultation, we published an updated Data access policy paper in October 2023. This sets out the revised commitment and key strategic policy decisions, including taking a phased and incremental approach to moving to a system of data access. This demonstrates the complexity and scale of change as we implement Secure Data Environments.
Our policy will continue to develop in detail as Secure Data Environments are implemented, and we learn from practical delivery experience and further engagement with our stakeholders and the public.
How are we delivering Secure Data Environments
The transition to a system of data access is being facilitated by significant investment from the Data for Research and Development (R&D) Programme and the establishment of the NHS Research SDE Network. The NHS Research SDE Network is an interoperable England-wide system of SDEs at a national and a regional level, designed to help provide safer, more secure and faster access to different types of NHS data as well as ensure consistent standards and interoperability. These platforms will become the main route for accessing NHS data for research, and will sit alongside a small number of other data platforms.
Where do we go next
We will continue to expand and improve our data policy to ensure that appropriate technology, processes, and governance are upheld whenever NHS data is used for research or other secondary uses. In particular, we will be focussing on creating a high-quality data access ecosystem, with platforms that meet set standards for security and capability, and a robust and efficient process for users to access data.
As well as working with stakeholders across the sector, building public understanding through effective and transparent communications is critical to support the transition to data access. It is important to meaningfully involve the public in decisions and changes to how their health data is used.
The Data Saves Lives strategy includes a commitment to national public engagement on the use of health data. This includes £2 million of funding allocated to deliver public engagement, including large-scale public deliberations to engage with the public. This will be used to help shape our policy decisions moving forward.
