Using technology to manage and track access to secure health and care data.
The NHS has long been a custodian of vast amounts of patient data yet unlocking the full potential for purposes beyond direct care has proven challenging.
The traditional manual process by which researchers request and access NHS data is both complex and labour intensive for NHS data managers, governance managers and security teams. Concerns about security and data privacy, ensuring compliance with strict governance policies and maintaining transparency have only added to the complexity.
To address these challenges, NHS England’s ‘Data Saves Lives’ initiative led to the development of secure data environments (SDEs), data processing, storage and access platforms which uphold the highest standards of privacy and security of NHS health and social care data when used for purposes beyond direct care, such as research, audit and service improvement. These SDEs include specialised analysis environments, or trusted research environments (TREs), which enable secure and compliant data access for research, and which will allow a default of data access rather than data sharing.
Streamlining Data Access Requests for Thames Valley and Surrey SDE
In 2022, following a competitive process, funding was awarded to 11 regional NHS-led SDE teams. These regional teams bring together NHS organisations and integrated care boards (ICBs) with local universities, industry partners, patients and the public to build on existing collaborations and successful research partnerships. One such regional team is Thames Valley and Surrey (TVS) which is hosted by Oxford University Hospitals NHS Foundation Trust (OUH). The aim of the TVS SDE is to benefit local communities by:
- supporting research for new and improved diagnostic tools, and treatments
- helping the NHS plan better services
- making sure that everyone can see how local patient data is being used and what impact it has.
In January 2023 OUH approached System C for support with creating software applications that would allow researchers to self-serve when requesting access to data. The aim of the applications was to reduce the administrative burden of processing data requests, enabling a greater volume of requests to be processed each year, whilst also maintaining strict data governance and transparency requirements.
The Solution: Introducing Mauro
To solve this challenge, Mauro was identified as the perfect solution to expose metadata, describing available data to researchers in a safe and secure way. Mauro is a web-based solution developed by Oxford University (OU) and System C in collaboration with Oxford University Hospital (OUH) NHS Foundation Trust, in order to document and publicise metadata on various health datasets. It efficiently handles data dictionaries, assets, flows, requests, and standards.
Having worked with OU and OUH to develop Mauro since 2021, and as a main contributor to the open-source repository, System C’s Innovation Delivery team were able to use this wealth of experience to help the Thames Valley and Surrey SDE implement and adapt Mauro for their data mobilisation needs.
Alongside Mauro, System C was also asked to design and build a new request management system to fulfil the workflow needs of data access management.
The solution would comprise of three primary components: Mauro Data Mapper for metadata management, SDE User Portal for researcher project and data requests, and SDE Admin Portal to oversee data governance and access approval workflows.
The Key Features
The solution developed for the TVS SDE will include a number of core features which aim to streamline the process while enhancing data security and transparency.
Automated Data Access Management
SDE User Portal will automate the management of data access requests. Users will be able to log into the system, select the required data using the metadata and query tools available, and submit their requests through a user-friendly interface. After users submit their request, it will go for approval by the SDE management team and the Services and Data Access Review Committee. If their request meets a strict set of criteria, they will be granted access and queries for the required extracts will be created automatically. This automation minimises administrative tasks, streamlining the process and allowing users to access the data they have requested and been authorised to access more quickly.
Comprehensive Transparency and Audit Trail
SDE Admin Portal will create a record of decisions which have been made about each request, generating a complete audit trail for every transaction. This level of auditing and transparency is crucial for complying with NHS guidelines and maintaining trust amongst key stakeholders across the region and nationally, including the NHS, users, and the public.
Seamless Data Retrieval
Once a data request is approved, SDE Admin Portal will automatically create the required data queries and work with the processing environment of the SDE to securely transfer the requested data to the analysis environment. This process reduces the need for manual intervention, reducing the risk of errors and ensuring that the user receives the exact data requested and approved, while flexibly allowing human intervention and quality assurance. This feature is critical in any SDE, where managing the volume and complexity of data can be a significant challenge.
Enhanced Security
Security is at the heart of the SDE Portals design. Operating within the NHS's strict security framework, the solution restricts data interactions to controlled environments. The SDE User Portal supports secure access to detailed metadata that eliminates the need for users to have to access patient-level data to be able to build their cohorts and data specifications. This ensures that sensitive patient information is never compromised, adhering to the highest standards of data protection.
Compliance with The ‘Five Safes’ Framework
The Five Safes framework is a set of principles that supports data services to provide safe access to data for purposes beyond direct care. The SDE solution addresses all five principles;
- Safe People: Only trained and authorised (or ‘validated’) users gain access, verified through the SDE Portals.
- Safe Projects: Data is restricted to approved projects, with the SDE Portals overseeing project contexts to ensure compliance.
- Safe Settings: All data interactions occur in a secure, NHS-approved SDE and analysis environment, minimising risk.
- Safe Data: The solution enables access to data at the approved level of deidentification, balancing usability with privacy through metadata-driven access limits.
- Safe Outputs: Outputs are reviewed by SDE teams using requests in the Portals to prevent unintended disclosure of personal information, ensuring adherence to NHS privacy standards.
Going Live In 2025
The TVS SDE is set to launch the User and Admin Portals in 2025. Working closely as a team, System C and OUH are collaborating to ensuring a seamless launch, with continuous testing, gathering of user feedback and implementation of new features to ensure that maximum value can be derived from the solution.
Once live, the SDE Portals will enable users to view the catalogue of data and request access to exactly what they need. This will reduce the time that SDE administrators need to spend identifying and locating the data that is suitable for a user’s project. The portals will also provide a clear overview of how a request is being processed, alongside all its supporting information. This will provide a clear audit trail and build trust and transparency in managing access to NHS data.
“Managing requests for data for purposes beyond direct care has been a labour-intensive, time-consuming activity for NHS teams that are not adequately resourced to do so. By working with System C’s Digital Innovation team, we have been able to combine the metadata management capabilities of Mauro with a simple but powerful set of portals that allows people who want to work with health and care data from the NHS to request exactly the data that they need and provide all the information required to assess their request. Not only do the Portals and Mauro make the process much easier and clearer for users, but they are invaluable in reducing effort for NHS teams while enhancing security, privacy, transparency and reproducibility. The team from System C has brought a wealth of knowledge, skills and experience to the design and build of the Portals, and has delivered with flexibility and precision.” TVS SDE Team
Summary
SDEs are an important step towards enabling better access and management of data to support research and analysis that contribute to improved health outcomes and provide value to the NHS and our population. Mauro and the SDE Portals support this goal by ensuring validated users have appropriate access to data while maintaining rigorous security and governance standards.
By providing a scalable, transparent and secure platform, Mauro and the SDE Portals have been able to meet the immediate needs of the TVS SDE while serving as a model for other NHS trusts aiming to enhance their data management capabilities.
To learn more about Secure Data Environments and how System C and Mauro are contributing to their development, as well as the features and benefits that could help your organisation, please sign up to our webinar, or book a call with our team.
Learn more about the TVS SDE or contact the team directly at TVSSDE@ouh.nhs.uk.
