The Digital Innovation Hub (DIH) Programme was established in 2018 with a vision of realising the enormous potential of the UK’s health data for public and patient benefit. Here, we explore how this pioneering programme has established a clear national strategy for the trustworthy use of heath data for research, strengthened further by a core commitment to working with patients and the public from the outset.
Funded by the Data to Early Diagnosis and Precision Medicine (D2EDPM) challenge, delivered by Innovate UK and the Medical Research Council, Health Data Research UK (HDR UK) established the DIH Programme to develop a UK-wide infrastructure for the trustworthy use of health data for research.
Its vision, to enable data-driven breakthroughs in healthcare to improve patient outcomes, continues today with key developments being taken forward through further investments, including £175m for NHS England’s Data for Research and Development Programme and HDR UK’s renewed core funding (2023-2028).
As the DIH Programme concludes and we publish the final collection of evaluation reports, we explore how this innovative programme has created a strong and enduring foundation for the longer-term, more ambitious use of health data for public benefit.
Building complementary infrastructure
Following an extensive Design and Dialogue Phase, the DIH Programme established three interlinking components that were key to its success:
- The Health Data Research Hub Network (the Hubs)
- The UK Health Data Research Alliance (the Alliance)
- The Health Data Research Innovation Gateway (the Gateway)
By design, they worked in synergy: the Alliance driving best practice and standards across the health data ecosystem; the Gateway providing technical solutions aligned to Alliance recommendations around data discovery, transparency, and access; and the Hubs adopting the solutions of the Gateway as members of the Alliance.
The Hubs Network – a national model of success
Each Hub is a collaboration across NHS, industry, academia and public and patient representatives with a specific area of clinical or data-as-a-service expertise, setup to provide a range of services to support and enable external users to understand and use health data for research and innovation.
Seven Hubs were established in 2019: INSIGHT, Discover-NOW, Gut Reaction, DATA-CAN and BREATHE were funded directly through the D2EDPM challenge, and a further two – NHS DigiTrials and PIONEER – funded via HDR UK core funds. The network expanded to nine in 2021 when UKRI’s Medical Research Council (MRC) supported the award of two more Hubs, Alleviate and DATAMIND.
As exemplified by the experience of the Gut Reaction Hub (NIHR BioResource), linkages to routine NHS records (primary, secondary care, high-cost drugs) for consented studies remains a significant operational challenge, and a burden for study teams. In their experience, they were unable to ‘link once (to a nationally held NHS dataset) and use many’, instead requiring permissions for linkage on a project- by-project basis. Furthermore, gathering data from individual NHS Trusts involved navigating the complexity of different data collection methods and systems, and the need to agree data sharing arrangements with each Trust’s governance teams (who often had different interpretations of what could be agreed).
Collectively, the Hubs shared knowledge and discussed similar ways of working, tackling challenges in health data science to become the active network they are today. They continue to evolve and are helping to shape the UK research data ecosystem. After playing an integral role in the world-famous RECOVERY trial during the Pandemic, NHS DigiTrials is now supporting high profile developments including the NHS Galleri Trial and Our Future Health – the UK’s largest ever health research programme.
Discover-NOW has established the London Secure Data Environment (SDE) as part of the NHS Research SDE Network (part of NHS England’s Data for R&D Programme), expanding both its population base beyond North West London as well as its service portfolio. Similarly, PIONEER, the health data research hub for acute care is contributing to the data and service offer of the West Midlands SDE.
DATA-CAN is involved in the national SDE, whilst Gut Reaction will continue as part of the NIHR BioResource, supported by Crohn’s & Colitis UK. INSIGHT, with its ground breaking eye imaging data resources, is now being taken forward by Moorfields Eye Hospital, a founding partner of the Hub and one of the oldest and largest centres for ophthalmic treatment, teaching and research in Europe.
DATAMIND and Alleviate are partway through their initial funding and continue their development as part of the Hub Network. DATAMIND has been identified as an integral part of the £17.5m UKRI investment in Mental Health Platform Hubs with a focus on severe mental illness, whilst Alleviate forms part of the £24m investment in the Advanced Pain Discovery Platform (APDP).
The Alliance – impactful standards for health data research
The Alliance is an independent network of leading healthcare and research organisations working together to establish best practice, standards and tools to enable the ethical and trustworthy use of health data at scale for research and innovation. It has grown from 10 founding members to over 80 in a few years and recently extended its membership to include non-data custodian organisations for the first time.
To date, the Alliance has published several influential papers on data standards, trusted research environments, and data use registers. Many of these standards have been implemented by the Hubs and Gateway as part of the DIH Programme.
The vital work of the Alliance will continue over the next five years as part of HDR UK’s renewed core funding, with a focus on growing its membership, improving standards in data access, data quality and data diversity, and expanding its reach across industry and international organisations.
The Gateway – a unified tool for data discovery
The Gateway launched in 2020 to provide a portal for researchers to search, discover and request access to health datasets in the UK. Its core services enable users to explore, manage, enhance and request access to health data, tools and other resources vital for research.
To date, the metadata from over 800 datasets across 70+ data custodians have been made discoverable on the Gateway, and more than 2500 people from across the health data community are registered users on the platform. More than 1000 data uses have also been uploaded to the Gateway data use register in line with the standards developed by the Alliance.
The Gateway, a key component of HDR UK’s new technology strategy, is now being developed in collaboration with NHS England’s Data for Research and Development Programme as the ‘single front door’ for the NHS Research SDE Network. It will evolve to provide users with a clear and consistent user journey for data discovery and cohort finding; reducing complexity and confusion for those wanting to securely access data to improve care and reduce burden on the NHS.
Supporting industry-enabled innovation
Central to the design of the DIH Programme was close partnership and collaboration with industry. This was predominantly through the Hubs although all elements of the programme have engaged with industry in different ways.
Discover-NOW and AstraZeneca worked together to develop and an app-based remote monitoring programme for patients at high-risk of type 2 diabetes, whilst BREATHE worked with over 20 commercial companies to create a community of industry partners with a special interest in respiratory disease.
Over the duration of the programme, the Hubs developed hundreds of projects to support industry-enabled innovation in drug-discovery, precision medicine, diagnostics, artificial intelligence and better care delivery. Many of these partnerships continue today.
Embedding Patient and Public Involvement and Engagement
Given the focus of the DIH Programme on the use of data by industry, Public and Patient Involvement and Engagement (PPIE) was integral to its delivery and success. The Hubs designed and deployed innovative approaches to earning and maintaining public trust throughout their development.
DATA-CAN’s empowerment and co-creation approach to PPIE was featured in the British Medical Journal (BMJ)’s Partnerships in Practice blog, whilst Gut Reaction’s Patient Advisory Committee engaged with over 1600 people to help shape its strategy and co-produce the first ever PPIE training programme. PIONEER also rooted public members into its Data Trust Committee, which is responsible for reviewing every single data request application that comes through the Hub.
Discover-NOW partnered with OneLondon to deliver one of the UK’s most progressive and large-scale public consultation events on the use of health and care data. The recommendations subsequently informed the Hub’s governance structure, decision making and policy development, and the report itself provided a wider practical guide to building public trust and creating more effective engagement.
The HDR UK Public Advisory Board provide a continuing source of input to both the Alliance and Gateway.
Responding to the pandemic
COVID-19 struck when the programme was less than 4 months into its build phase, which, in common with many other areas of research and development, necessitated an unplanned pivot. However, its emerging infrastructure was rapidly supporting the national research response to the pandemic.
The Hubs played a critical role in rapidly linking data to answer big questions and generate tangible results. For example, NHS DigiTrials provided the data behind the RECOVERY Trial – a landmark study which identified dexamethasone as an effective treatment for COVID-19. Whilst BREATHE produced ground breaking analysis of vaccine uptake, safety and effectiveness through both national and international collaborations.
A foundation for the future
The Hubs, Alliance and Gateway, supported by a robust PPIE strategy and strong partnerships with industry, were setup to provide a coordinated approach to uniting, improving and using health data at scale for research and innovation. The pandemic both pivoted and accelerated the development of the DIH Programme and demonstrated for the first time the immense value of a UK-wide infrastructure for health data research.
High-quality, research ready data has never been more discoverable, with access now more streamlined and governed by best practices set at the national level. And whilst there remains further work ahead, the DIH Programme has successfully created a strong foundation for the future, setting out an innovative and progressive pathway towards scaling up solutions that can fully unlock the transformative potential of health data research.
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