How Secure Data Environments can help drive advances in health data research

Data dissemination essentially means that the NHS acts as a lending library. Researchers come to NHS data controllers, are verified, and are then sent health data to use outside of the NHS’s ecosystem. However, because of the size and complexity of the NHS, there is not just one point of contact. Instead, estimates suggest there are around 7,000. This means researchers need to spend a lot of time and effort to get the information they need. Imagine if reading a book involved having to apply to multiple different libraries, each with their own complex lending policies, one chapter at a time. That’s often how gathering health data for research works in England today. Simplifying access routes is necessary to make sure researchers can focus on research.

What is the new system?  

NHSE is currently setting up a new network of SDEs as part of the Data for R&D Programme, with £175m initially allocated for this and another programme called NHS DigiTrials. The SDE Network will be formed of two parts: one large SDE covering the whole of England, containing high level national datasets, and 11 smaller subnational ones covering areas like London or the north-east, containing more detailed datasets. This should reduce the 7,000 points of data access to 12.

If the new network is properly implemented, with more effective methods of data application and granting processes, researchers will be able to obtain the data needed for their research quicker and more efficiently. To ensure this happens, the Data for R&D Programme must deliver a single front door researchers can use to access the different SDEs.

But what is a Secure Data Environment?  

An SDE is a protected space for sensitive data that can only be accessed by authorised researchers remotely. This approach ensures that patient data remains confined within the environment: while users can extract results such as tables or graphs, the raw data itself can never leave the host system. This setup grants custodians of the data more control over its usage and increases safeguards preventing misuse of data. It also allows for improvements to the data to be more easily implemented, as everyone is working from the same dataset and not multiple copies.

A simple way to think about this is to picture an SDE as a reference library for health data, rather than a lending library. After appropriate checks have been made, researchers can (remotely) enter the library to read and analyse specific data, but they can’t take it away with them. Instead, they’re only able to export the results they get from using the data. In short, the SDE approach means data remains within NHS systems, making it fundamentally more secure. This also protects the quality of the data by ensuring it remains in a single dataset, which is easier to maintain and manage.

What are the potential benefits of the new system? 

The main potential benefits are:   

1. Efficiency – Properly implemented, a reduction in access points should make it easier and quicker for researchers to access health data.
2. Security – Because data remains on NHS systems, it is easier to monitor what researchers are doing with it.

These benefits are reflected in the fact that there is great deal of support for SDE-like systems, often called Trusted Research Environments (TREs), across the sector and in UK research communities. Examples of TREs include Scotland’s Data Safe Haven Programme, the SAIL databank in Wales and Genomics England’s Research Environment.

Sounds good! But what’s needed for the NHS Research SDE Network to be a success?

There are a few things that NHSE and the Data for R&D Programme need to do to take full advantage of this opportunity to improve data access and data security. We’re currently developing a policy paper that will outline some of the specifics, including points on pricing, avoiding further fragmentation, and ensuring patients and the public can be meaningfully involved in the creation and governance of the network.

However, most importantly, the new UK Government needs to use its next spending review to ensure that the central SDE and all subnational SDEs are on a sustainable footing beyond 2025. This includes providing the Data for R&D Programme with the resources it needs to make sure that access to data is more timely and less complicated than it is today, and that it can be delivered at a price that doesn’t stop researchers from carrying out their vital work. The SDE Network also needs resources and support to meaningfully involve patients and the public.

The guaranteed funding must be commensurate with the size of this challenge. The SDE Network has the potential to improve data access for a generation, but only if it can secure sustained, significant long-term support and investment.