This blog by Dr Claire Bloomfield looks at the recent progress towards delivering the Data saves lives strategy.
Secure data environments (SDEs) are data storage and access platforms, which uphold the highest standards of privacy and security of NHS health and social care data when used for research and analysis. They allow approved users to access and analyse data without the data leaving the environment. Today we are really excited to announce over £13.5 million investment for teams across England to develop a country-wide network of NHS owned SDEs.
Secure data environments (SDEs) will deliver more rapid and efficient healthtech innovation for England. In line with recommendations included within Ben Goldacre’s ‘Better, broader, safer’ review, our data strategy commits to transparent procurement, acquisition and use of SDEs. Early returns suggest the concept is catching on.
In March we announced up to £200 million of joint funding across NHS England, the Department of Health and Social Care (DHSC) and the Department for Business, Energy and Industrial Strategy (BEIS) to make health data more accessible and linkable. The funding enabled us to begin investing in data-driven clinical trials and secure data environments (SDEs) for research. I’m pleased to provide this update about how we are working towards our vision of a world-leading, NHS-wide, health data research infrastructure that enhances patient care, sustains the NHS, supports innovation, and is understood and well-supported by the public.
Commitment to data access
Our Data saves lives strategy made the commitment to move from a system of data sharing to one of data access when making NHS health and social care data available for research and analysis, a transition facilitated by the implementation of SDEs. This was followed by the publication of 12 secure data environment policy guidelines in September 2022. The guidelines communicate the intent and direction of travel for the policy, and lay the foundations for the development of more detailed guidance and requirements.
In October, the NHS Digital (national) secure data environment released a significant upgrade to its system. This is enabling more users to make use of the beta product, and takes it a step closer to being a sustainable, core part of how we make national data securely accessible for research.
NHS DigiTrials has been developing at pace, including the remarkable achievement of supporting the NHS-Galleri early cancer detection study to recruit over 140,000 citizens to participate in less than a year. On 9 November the service also launched a ‘beta’ version of its Feasibility self-service tool, creating even more opportunities for life saving innovations to be developed at pace for the NHS.
Sub-national secure data environment investment
Finally, I’m thrilled to announce that, following foundational investment in 21/22, and a competitive process over this summer, we’ve awarded over £13.5 million funding that will support the development of an interoperable network of NHS-owned Sub National Secure Data Environments, with further investment planned over 23/24 and 24/25.
The Sub National SDEs are NHS-led and bring together Integrated Care Boards with local universities and industry partners to build on existing collaborations and successful research partnerships.
Funding will ensure Sub National SDE coverage for the whole of England and was awarded to teams representing East of England; East Midlands; Great Western; Kent and Medway and Sussex; London; North East and North Cumbria; North West; Thames Valley and Surrey; Wessex; West Midlands; Yorkshire and Humber.
Sub national SDEs for research will offer near-real time, privacy protecting, access to rich linked data spanning different types including imaging, pathology and genomics. They will operate at significant scale, covering around 5 million citizens each, whilst preserving connectivity to local communities and clinical teams. The Sub National SDEs will be designed to operate smoothly with the NHS Digital (national) secure data environment, unified by a community of practice that will inform SDE policy and build on prior investments including – where lawful – the use of information from shared care record solutions.
The development of the network has, and will continue to, be shaped by meaningful conversations with patients and the public. The results of one such public deliberation, funded by the Programme and led by OneLondon, are available here. They highlight the expectations of the public for regional availability of data for research, and expectations for privacy and transparency, this funding represents a significant step forward for the programme as we move from concept to creation, delivering on our strategic ambitions to power research with data to save lives.