The Data Saves Lives strategy, published summer 2022, set out how NHS data could bring benefits to all parts of health and social care – from care on the frontline to pioneers driving cutting-edge research. As part of delivering the strategy, NHS England’s Data for Research and Development Programme is investing in the NHS Research Secure Data Environment Network to power life-saving research and treatments.
Rebecca Cosgriff, recently appointed as Programme Director for the Data for Research and Development Programme, describes some of the progress to date, welcomes some new team members and, as we go into the new financial year, describes the focus for the future:
We should be proud of the NHS’s position as a research powerhouse. As a nation we have built one of the richest datasets in the world, representing our diverse population and underpinned by a national cradle to grave model. Couple this with clinical and academic expertise in genomics, medical imaging, and digital pathology, the future potential is astounding. Our programme is designed to power life-saving research and treatments, through a network of NHS Research Secure Data Environments (SDE), where researchers come to the data, rather than data leaving the NHS.
The SDE Network uses state of the art tools to enable secure and rapid access to the world’s largest linked health datasets, and bring together data that has previously been fragmented. We are supporting innovative research of all types: including clinical trials, post-market surveillance, epidemiology, translational research, and AI (Artificial Intelligence).
The Network leverages full-system capacity to support as much research activity as possible, and includes the NHS England Secure Data Environment (SDE), which provides national scale coverage of highly curated, high value datasets including cancer and rare diseases; and a small suite of SDEs that collectively cover all of England and provide access to granular, near real-time, multimodal data bolstered by clinical and data science expertise that supports data curation and the translation of research into practice.
The SDE Network is a long-term infrastructure change programme and will evolve over time, but we are proud of the significant progress we have already made. This includes: adopting data standards that are key to interoperability and developing our data pipelines and service catalogue to make data rapidly discoverable through the SDE Network’s Collection on the Health Data Research (HDR) UK Health Data Gateway.
We are also already delivering research impact, with more than 60 active research studies underway, and we are rapidly turning around requests for secure data access within one month. Four of the SDEs now have Confidentiality Advisory Group (CAG) approval to process patient information for research, following collaboration with the Health Research Authority, with others in the network continuing to work towards CAG approval.
Current projects include:
Ethnicity data from health records of over 61 million people were securely studied in detail for the first time as part of a project aiming to reduce bias in AI health prediction models.
- Patients with Hepatitis B can be followed up for research, thanks to the Thames Valley and Surrey SDE, which created a multi-site, large and scalable dataset.
- The North West SDE has launched a mental health research project with the Mental Health Research for Innovation Centre (M-RIC).
- In the Kent, Medway, and Sussex SDE they are doing work to tackle Inequality in Coastal Communities.
- The Yorkshire & Humber and North East and North Cumbria SDEs are collaborating to securely use multimodal data to understand haematological cancer.
So that’s what we have been working on, but what’s next? We will be running seven ‘driver projects’ that access data from multiple SDEs by March 2025. They will test the development of a single analytic interface per project, offering a consistent user experience across the SDE Network even where data from multiple SDEs are required.
We cannot do this without the support of the public and patients. Starting in May, we will be engaging the nation to make sure we hear, understand and respond to the view of people – this will complement work done by SDEs across the Network such as the recently published public deliberation that will guide the London SDE, by OneLondon.
We are also investing in our team. I’m delighted to welcome Hilary Fanning as our Senior Responsible Owner. Hilary has previously led the West Midlands SDE, which has reached out to over 550 organisations to engage with a broad range of under-served communities. I’m excited to work with Hilary to realise the vision of the programme over 24/25 and beyond.
The Data for R&D Programme is on a journey that I’m proud to be a part of, as we connect and accelerate secure access to data aimed at improving care, supporting the NHS, and driving innovation.
To find out more, please go to How will Secure Data Environments be delivered? – Secure Data Environments (SDEs) – NHS Transformation Directorate (england.nhs.uk
