Health Data Research UK is leading the delivery of the Digital Innovation Hub Programme – a UK-wide initiative to enable the safe and responsible use of health-related data at scale for research and innovation.
This is a four-year programme (September 2018 to July 2022) delivered on behalf of UK Research and Innovation. The programme is funded by the UK Research and Innovation’s Industrial Strategy Challenge Fund, receiving £37.5M. It is an element of the ISCF’s Data to Early Diagnosis and Precision Medicine challenge, placing early diagnosis and the best treatments for particular patients at the heart of a national approach to better health. This builds on many recent healthcare technological advances, including in digital health and genomics, and on broader developments in data science and artificial intelligence.
Inspired by the Industrial Strategy: Life Sciences Sector Deal in December 2017, between 3-5 Digital Innovation Hubs will be created in regions across the UK to connect health-related data for research and innovation, within a single interoperable, trusted and secure governance framework. This will enable accredited researchers, scientists and innovators to work together and safely and securely use data to harness scientific knowledge and emerging technologies at scale, across populations of between 3-5 million people. It will support the development of future treatments, increase our understanding of disease, enhance health services and ultimately improve the way we are able to prevent, detect and diagnose diseases such as cancer, heart disease and asthma.
The UK has some of the richest health data of anywhere in the world. However, these datasets across health, care, genomics and biomedicine are fragmented making it difficult, sometimes impossible, to access and use for research purposes. This causes delays and, in some cases, prevents accredited researchers and industry innovators from analysing data to help deliver better care and improve health for patients, society and for future generations.
The Digital Innovation Hubs will securely and safely connect data and create an accessible layer of data from GP practices, hospitals, social and community care providers, alongside genetic and biomedical information and other datasets for research and innovation. Combined with the unique research expertise across UK universities and industry, this programme offers an unprecedented opportunity to use data to improve the long-term health of the public. It will also create new jobs in the UK’s life sciences economy, drive medical innovation and ensure that NHS patients benefit from new treatments first.
Over the longer-term the ambition is to expand the programme towards full UK population coverage, to rapidly enable researchers and innovators to engage with a meaningful dataset.
Health Data Research UK will deliver this programme by working in partnership with universities, health and care providers, patients and the publics, industry, regulators, major national programmes such as Genomics England and UK Biobank, and other organisations with expertise in health data research.
Read our news story announcing Health Data Research UK’s leadership of the initiative here.
The vision of the Digital Innovation Hub Programme is to function as a single UK entity, through the adoption of common processes, data standards, interoperability guidelines, protocols and principles, to increase the productivity of academia, the NHS, industry innovators and the economy. This will be achieved through the development of a co-ordinated and efficient set of research and innovation services at scale, for academia, industry and health professionals. Non-exhaustive examples of Digital Innovation Hub uses include:
The Digital Innovation Hubs will align to a single framework and operate within robust governance standards that satisfy (amongst others) guidance provided by the Health Research Authority, Information Commissioner’s Office and National Data Guardian. They will allow longitudinal data covering primary, secondary and social care to be linked to other ‘deep’ multi-dimensional datasets and used for a multitude of research and innovation projects.
The Digital Innovation Hubs will have the following functions/capabilities:
To deliver this, we anticipate that the Digital Innovation Hub Programme will require five integrated governance, managerial and technology elements for success:
To achieve the user-centred technology specification for the Digital Innovation Hub Programme, we anticipate the implementation of a federated “production” cloud-enabled data management infrastructure.
The development of the infrastructure will be underpinned by a Health Data Research Prospectus, to be published in Spring 2019. This will outline the architecture; data and technical standards and governance frameworks needed to establish a flexible but consistent approach to the import, aggregation, normalisation and archive of large quantities of data, over an extended period of time, derived from a wide range of systems, managed by different organisations, over a wide population.
It is anticipated that Hubs will provide analytics tools for research and innovation, provided in a secure work-space and made available and usable by a wide range of staff and be highly configurable.
Controlled shared access to the appropriate level and types of data and analytical tools by researchers and innovators from a range of organisations will be required, allowing them to both enter and retrieve data according to the information governance arrangements and data sharing agreements in force.
As the programme develops we will publish further details on our website, including information about events and workshops for you to participate in, so please do check back.
If you would like to register your interest to receive news and updates about the Digital Innovation Hub programme and events, please email us at firstname.lastname@example.org and we will add you to our contact list.