Multidisciplinary support to develop and embed a secure data environment across Kent, Medway and Sussex enabling researchers to access health and social care data.
Challenge
The wealth and diversity of NHS data makes it an incredibly valuable asset when used to improve service quality, better understand diseases and identify life-saving new treatments through research. But using data in this way means the NHS has a duty to keep patient information safe, secure and protected.
Secure data environments (SDEs) are data storage and access platforms, which uphold the highest standards of privacy and security so that health and social care data can be accessed for research and analysis. Implementing SDEs is part of a national strategy led by NHS England’s Data for Research and Development Programme.
The two ICBs covering Kent, Medway and Sussex wanted to embed a joined up and consistent SDE but needed support to bring together differing data access, ethics and processes.
What we did
A multidisciplinary NHS SCW team was established to work in a structured, collaborative and engaging way with the customers and other key stakeholders. The team incorporated technical and analytical experts as well as experienced professionals from communications, finance, information governance, operations, service models, patient and public involvement and engagement, and PMO.
NHS SCW was involved from the outset of the project, initially supporting the business case and securing national funding.
Researchers and members of the public from across Kent, Medway and Sussex were engaged to set the SDE in motion and meet key deliverables. The SDE now benefits from robust programme governance including a Programme Board, Research Advisory Group, and Public and Patient Advisory Group.
NHS SCW has ensured that both Kent and Medway and Sussex ICBs have efficiency across the programme with improved data quality and reduced costs. A minimum viable product SDE solution was delivered in autumn 2024 and is currently being used by researchers to access data.
A dedicated FutureNHS workspace went live in October 2024 as a place for programme partners to share ideas and access resources and information.
Activity
Digital, data and technology
data management, putting the technical architecture in place, datasets created and standard agreed.
Corporate services – information governance
Data Protection Impact Assessment (DPIA) and Data Sharing Agreement (DSA) agreed and implemented.
Transformation consultancy – PMO
minimum viable product established, bespoke briefing pack creation and support to programme lead and project delivery team.
Transformation consultancy – communications and engagement
communications strategy established, materials developed, website created, content and social media, launch event in planning.
Impact
Kent, Medway and Sussex (KMS) now has an efficient and joined up SDE solution which is enabling researchers to access health and social care data safely and appropriately.
KMS was the first SDE to build and test the automated upload of data catalogues to the Health Data Research Innovation Gateway.
The SDE also works in collaboration with three other SDEs in the south of England - the Southern Consortium - whose focus is on datasets that will be useful to the research community.
KMS SDE is now leading a groundbreaking proof of concept with Pfizer on personalised medicines information. Pfizer has commended the team’s agile approach to overcoming challenges, high degree of professionalism, multidisciplinary subject matter expertise, and its ability to facilitate researchers, data analysts and developers in moving the programme forward.
