Infrastructure and Services - Technology Services Ecosystem

The UK has incredible information resources, ranging from NHS data collected as part of patient care to custom data collected for research projects such as the genetic information on human disease in the UK Biobank. Protecting patient information has always been one of the highest priorities for these resources, making it difficult for researchers to combine the information held in different places. Unfortunately, this means we are missing opportunities to answer questions about human health, disease and care.

This work will bring together experts from across the UK to develop new ways to use the information held in different places, while still keeping individual patient identities private. The outputs will directly support HDR UK’s ambitious projects, while setting up foundations that will enable the wider research community to make discoveries that improve people’s lives.

This work is funded by the UKRI Medical Research Council, UKRI Engineering and Physical Sciences Research Council, UKRI Economic and Social Research Council, Department of Health and Social Care, National Institute for Health Research (England), Chief Scientist Office (Scottish Government), Health and Care Research Wales, Public Health Agency HSC (Northern Ireland), British Heart Foundation and Cancer Research UK

HDR UK's vision is to enable FAIR access to population scale data at depth and breadth, enabling linkage of data from many custodians, and federated analyses across Trusted Research Environments (TREs) for many health data researchers across the UK and globally.

This pillar will bring together a UK-wide team of leading technologists, and data scientists from across academia, TRE providers, industry and the NHS all committed to the assembly of an ecosystem of services. Embedding a collaborative, federated delivery model will enable greater patient and public benefit than any single organisation can achieve in isolation, whilst still maintaining autonomy of all involved.

HDR UK’s independence, convening power and deep technical skills allows the Institute to play a distinctive role in the technology ecosystem. HDR UK will enable streamlined data access through the Gateway and facilitate the assembly of tools, technologies, standards and approach for federated data analysis across multiple TREs.

Aim
The pillar will build on the technical foundations established by HDR UK in the last five years, together with services provided by national and international partners to:
1. Enable streamlined access to data through the Gateway in an approach which meets the needs of the research data users, data custodians and TRE providers
2. Deliver a portfolio of interoperable and integrated services across TREs, to enable new federated discovery and analytics capabilities, prioritised according to user needs.
3. Support the development of an open, collaborative, trustworthy and secure approach that is adaptable to the changing landscape

Impact and legacy
The Gateway and other core services will provide rapid data discovery, and faster and wider data access for users to seamlessly discover and access a vast range of UK health and related datasets. The Gateway, the TRE ecosystem and federated analytics will together provide an open development community, increasing the number of FAIR datasets and tools, enhancing the overall ecosystem. Pillar 1 will also enhance the technical capacity and capability across the HDR UK network, driving an open standards-based development community in the UK and globally.

The federation of analysis across TREs provides impact by increasing connectivity across TREs, delivering new data linkage models, services, the development of analysis methods, as well as growing analytical capacity.

The Gateway already hosts 720 datasets of which 432 datasets include high quality technical metadata The work of the Technology Services Ecosystem pillar will extend this legacy by addition of new metadata (individual level data remains with TREs) provision of new programmatic models of access and will inform the future approach to delivery of services and cross TRE integration/analytics.

For patients, the work undertaken in this pillar will enable analyses to be more efficient, scalable and applied to larger volumes of data. In turn, this will enable more detailed, faster analyses to answer the research questions which will make a difference to people’s lives.