The East of England Secure Data Environment (SDE) is now live and open for research, representing an important milestone in this initiative led by Cambridge University Hospitals NHS Foundation Trust (CUH) in partnership with Health Innovation East’s health informatics team and Cambridge University Health Partners.
The East of England SDE is a digital platform that supports secure, controlled access to de-identified NHS patient data for approved research to improve people’s health. It is part of a national network of regional NHS secure data environments across England.
With the principles of privacy, security, and transparency at its heart, the goal is to make access to health data for research and innovation faster, easier and more secure – ultimately to improve peoples’ lives.
Using patient data for research carries great potential and great responsibility. The team developing the SDE has placed patient and public involvement and engagement (PPIE) at the centre of the SDE’s design, governance and delivery from the start. Research services that use NHS data must be developed in the public interest and for patient benefit, with public voices actively shaping how data is accessed and used.
Patients and the public will continue to play a key role in shaping how the SDE is built, governed and communicates. A dedicated advisory group of patient and public representatives, regional workshops delivered in partnership with Healthwatch organisations, and a 210-response public survey have gathered views from a broad cross-section of the East of England’s population about current and potential uses of NHS data.
In a time when every bit of data about me is saved virtually, I would like to be assured that my most personal matters regarding my health saved by the NHS is not being used for something I wouldn’t want it to. Therefore, SDE provides a platform which does inform me on how my data is being used.
Importantly, this commitment doesn’t end with design. Patients and public representatives are a key part of the SDE’s Data Access Committee (DAC) which ensures that each application for SDE access is assessed not only for scientific and technical merit, but also for alignment with public values and expectations.
Improving access to fragmented health data: The SDE will enable researchers to more easily discover and request access to datasets that are managed by NHS organisations across the East of England.
Making data research more efficient: Accessing and using sensitive health data can be time consuming and costly. The services provided by the SDE will streamline processes, help standardise data, and provide the space, power and tools for analysis all in one place.
Navigating complex governance: The SDE provides a single process for accessing NHS data in the East of England and offers guidance in navigating data privacy and security regulations. This supports research teams through the important end-to-end governance process.
Enabling collaboration: The SDE provides secure project spaces, processes, functionality and data science tools to tackle challenges that arise with cross-organisation research.
End-to-end data security: The SDE is hosted by the NHS and only permits data to be accessed ‘on demand’ once a request has been approved for access by specific people, for a specific purpose. This reduces the need for patient data to be shared or copied and minimises risk to data privacy.
The SDE is enabling transformational research across a range of applications, from researchers that are bringing their own data to the platform because they require a secure environment and analytics tools, through to major studies requiring secure access to NHS datasets.
Unlike a traditional data lake (a digital repository that centralises and stores large volumes of data) the East of England SDE only imports data on demand and, in doing so, provides researchers with up-to-date access to datasets that are unavailable elsewhere.
Angela Wood, a professor of health data science at the University of Cambridge, is contributing to a project that is using de-identified, routinely collected NHS data from several NHS trusts in the East of England to improve care for people with heart failure. The goal is to validate risk prediction tools that could transform how clinicians identify patients with a higher risk of heart failure and help prevent their readmission to hospital.
We are helping to surface data in the East of England SDE that wouldn’t otherwise be available for research by working in partnership with NHS organisations from across the region.
Unique datasets that are unavailable elsewhere
Secure, scalable cloud environments
Access to industry-standard analytics tools, such as Python and R
Data ingestion and harmonisation on demand
End-to-end research governance and compliance support
CUH is already using the SDE as a secure analytics platform for collaborative research with trusted external researchers.
Our Trust is using the East of England SDE as a secure analytics platform. For the first time it gives us a secure space in which we can use data science tools and collaborate with trusted researchers and collaborators without needing to move, share or copy data. This is supporting our research while keeping patient data safe.
In addition, the SDE is enabling the safe development and testing of AI tools that use sensitive patient data, providing researchers with a secure environment to explore new technologies without compromising privacy. Approaching the adoption of AI this way supports the responsible scaling of AI in health research, accelerating innovation while maintaining public trust.
The SDE team has made major progress in putting in place the right governance structures and safeguards to ensure the East of England SDE meets the highest standards for secure and ethical data use.
The platform is ISO27001 certified, demonstrating that rigorous controls are in place to protect sensitive information.
To enable access to de-identified patient data for approved research, the SDE team secured key regulatory approvals from both the Health Research Authority’s Confidentiality Advisory Group (CAG) and an NHS Research Ethics Committee (REC). These approvals allow the platform to operate as a research database under Section 251 of the NHS Act, reinforcing its legal and ethical framework.
The East of England SDE is a ‘lighthouse’ for how cloud development for SDEs will go across the NHS and globally, with people internationally increasingly looking to how this programme is unfolding as an exemplar.
Delivering a programme as complex as the East of England SDE has relied on close collaboration with trusted partners, each bringing specialist expertise to support secure, scalable and standards-driven implementation.
Amazon Web Services (AWS) provides the cloud computing infrastructure that underpins the SDE, enabling scalable storage and computing power tailored to research project needs. AWS Research and Engineering Studio (RES) is used to deploy and manage the secure, isolated workspaces for researchers – enabling them to analyse data in a controlled environment.
Kainos supported the build of the core SDE platform – working with the team at Health Innovation East to develop a secure environment that meets the stringent data privacy, scalability and deployment requirements of SATRE (Standard Architecture for Trusted Research Environments) reference architecture specifications. Their work also ensures the platform is underpinned by the Five Safes principles – a widely used framework to ensure that sensitive data is used safely and responsibly.
The Hyve are ensuring the data accessed through the SDE is consistent, usable, and interoperable by delivering vital work on data standardisation and harmonisation, aligning diverse datasets to a common data model.
FITFILE are providing the tooling to support seamless cohort discovery and secure de-identification and linkage of data for selected study cohorts to be securely transferred into the SDE for research. The team is working towards an automated solution that will greatly accelerate time to insight for researchers.
These partnerships have laid the technical and operational foundations for a platform that is not only secure and compliant, but also future-proof and scalable.
The East of England SDE’s launch marks the start of a new phase for data-led research and innovation in the East of England.
As more datasets come online and more users engage with the platform, the SDE team is focused on scaling access, increasing transparency and demonstrating how data can be used safely to improve lives.
Interested in learning more about the East of England SDE? Find out more at its website or email the team at EoE-SDE@healthinnovationeast.co.uk
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