Establishing the Alliance

Funded as part of the Innovate UK Digital Innovation Hub (DIH) Programme, we formally launched the UK Health Data Research Alliance (the Alliance) in February 2019 with a mission to maximise the potential of UK health data by improving the infrastructure for research and innovation. Our aim was to bring together key players across the health data ecosystem to establish a coordinated approach to the standards, tools and technologies required to improve access and use of data for public benefit.

We were inspired by international collaborations such as the Global Alliance for Genomics and Health when designing its membership and governance, establishing a set of Principles for Participation that drew on national and international best practice frameworks, policy and recommendations. The founding members of the Alliance were representatives of the main public health and national NHS bodies across the four nations, key primary care data providers (Clinical Practice Research Datalink or CPRD and the Royal College of GPs Research and Surveillance Centre), and Genomics England.

Expanding our membership

In five years, we have achieved significant growth, both in reach and diversity of organisations joining the Alliance – we started the Alliance with nine members and today that representation exceeds 100 organisations. Initially, membership focussed on data custodians, with research active NHS trusts, medical research charities, health data research hubs, and academic units running research cohorts all joining the Alliance over the first years.

With a strong and growing partnership in place, we were soon ready to widen membership of the Alliance to complementary groups such as policy decision-makers, funders, regulators, and patient groups. In July 2023, the first non-data custodian organisations joined the Alliance, including two industry trade associations and the Association of Medical Research Charities (AMRC). This development supports an evolving health data research landscape, opening up opportunities for further collaboration and strengthening partnerships with key institutes and organisations that play a crucial role in a complex ecosystem.

Accelerating data discovery and access

To support researchers to find the datasets they need quickly and accurately, the Alliance worked in collaboration with the Gateway to develop a common specification for the onboarding of metadata (data about the data) to the platform. Iterations of this standard have been used to improve the discoverability of more than 800 datasets through the Gateway, including hundreds of data assets from Alliance members.

The COVID-19 pandemic amplified the need to accelerate access to new and existing data to ensure better and faster research, adding urgency to our mission to improve access to health data for research. In only nine months, Alliance members from across the four nations and the Office for National Statistics (ONS) came together and developed a harmonised data access application form based on the Five Safe Framework.

We then embedded this form into the Gateway and it was used by researchers to request access to key COVID-19 priority datasets from the participating national data custodians. During this time, 21 data access applications used this harmonised approach. Before this, all data custodians had their own processes in place to provide access to data and so while the Five Safes form on the Gateway served as a data access harmonisation trial in response to the urgent needs of the pandemic, it was a clear demonstration of true alignment of best practice for data access across the four nations.

This work is now being taken forward through the Pan-UK Data Governance Steering Group.

Recognising the potential of TREs

The pandemic also accelerated the development and use of Trusted Research Environments (TREs, also known as Secure Data Environments or SDEs). From the very beginning, the Alliance advocated that access to sensitive health data should be through a TRE. The transition away from data release and towards the TRE model of access to a secure analytics environment was in line with arrangements in the devolved nations and the approach already being taken by Genomics England and the Office for National Statistics.

In early 2020 we held a timely workshop, bringing together experts from across the UK, to help understand the technical, governance and process challenges of TREs and define a strategy to build public trust in the use of health data for research. The result was a green paper, setting out an aligned approach to TREs, published by the Alliance in July of the same year. A white paper ‘Building Trusted Research Environments – Principles and Best Practices; Towards TRE ecosystems’ followed in December 2021. Since its publication, the paper has been downloaded over 8000 times.

The work of the Alliance on TREs, alongside other key policy documents such as the Goldacre Review and the government’s data access policy for the NHS controlled data in England, has undoubtedly had an impact in the UK, and has great potential to influence international policy.

Improving transparency

At the start of 2022, the Alliance published the first ever recommendations for a data use register standard. Data use registers are critical for building trust and transparency because they show how and why people’s data is accessed for research but previously lacked standardisation and agreement on best practice across organisations.

The recommendations were developed with input from many groups, including researchers, data custodians, funders, policy makers and most notably members of the public and representatives of patient groups. The paper provides a new standard to help data custodians publish consistent and accessible public records of how the data they hold are used, by whom and for what purpose.

The level of engagement has been excellent – to date, the standard has been downloaded 2000 times – and it’s rewarding to see organisations adopting the recommendations. As of December 2023, 58% of Alliance members (that are data custodians) have published a data use register.

Development of a data use register on the Gateway was also shaped by the standard, improving the transparency of data uses for datasets made discoverable by Alliance members through the portal. There are now more than 1000 data uses listed on the Gateway.

Embracing international standards

One of our more recent priority areas has focussed on improving the adoption of internationally recognised standards to enable data interoperability within the UK and beyond. In October 2022, the Alliance partnered with the European Health Evidence Network (EHDEN) to fund UK organisations to transform their data to the Observational Medical Outcome Partnership Common Data Model (OMOP CDM).

Adoption of common data models across organisations increases the potential for interoperability, enhances reproducibility, facilitates collaboration, and enables the analysis of large-scale datasets to deliver reliable and comparable real-world evidence about treatments, interventions, and outcomes. We are delighted to be able to build on previous rounds of data partner funding from EHDEN and see the UK increase its standing in the international community. The enthusiasm, expertise and activity of the EHDEN network demonstrates how important it is to join forces to develop methods, standards and tools to drive better use of data.

Last year, the NHS Research Secure Data Environment Network also announced a commitment to adopt the OMOP model for health data, a decision warmly welcomed by the Alliance as we continue to work towards enabling use of recognised data standards and the adoption of common data models across the Alliance and beyond.

Looking ahead

Building on the successes to date, and as new and diverse organisations join the Alliance community, we are committed to continue our work to enable better data-driven research for public benefit.

Over the next five years, our aim is for the Alliance to become an internationally recognised and influential network of partners who enable and demonstrate trustworthy use of health-related data for research and innovation. We’ll do this through:

  • Building communities – we want to grow and strengthen the Alliance to include all UK major health-relevant data controllers, healthcare and research organisations, industry and other representative bodies, maximising the diversity, influence and reach of its membership.
  • Shaping standards – to enable Alliance members to contribute towards a UK wide infrastructure to improve the trustworthy use of health data for research through the development of standards, policies and best practice.
  • Adopting best practice – by working in partnership to support implementation and adoption of recognised standards, best practice and tools to accelerate trustworthy access and use of data.

We are grateful to all Alliance members for the support and commitment they have shown over the past few years and look forward to welcoming new members and continuing our work together to establish and drive best practice for the trustworthy use of health data for research.

About the authors

Paola Quattroni is the Head of Alliance Strategy and Engagement. Paola joined HDR UK in February 2020 and is responsible for the strategic and operational management of the UK Health Data Research Alliance, leading on data standards and infrastructure projects.

David Seymour is the Director of Infrastructure and Services at HDR UK. David led the development of the Alliance as part of the Digital Innovation Hub Programme (2018-2023), initially as Partnership Director, followed by Alliance Executive Director during which time he led HDR UK’s work to accelerate access to linked data for priority COVID-19 research to inform public policy. He was appointed to his current role in September 2022 and oversees the development and delivery of HDR UK’s infrastructure and services.

staff members of the Alliance team at HDR UK
Members of the Alliance secretariat team, including the authors of this blog, David (centre) and Paola (centre-right). L-R: Claire Argent, Kay Snowley, David Seymour, Paola Quattroni, and Stephen Burrows. Members of the Alliance team not present in the photo: Alex Knight; Nada Karrar; and Uwaye Ideh. The secretariat team provide vital support to the membership and work of the Alliance.

About the Alliance

The UK Health Data Research Alliance is an independent network of healthcare and research organisations that leads the development and adoption of standards and best practices  to maximise the potential of UK health data. Its mission is to accelerate improvements in biomedicine, health and care by encouraging widespread and responsible use of health relevant data in a trustworthy and ethical way for research and innovation.

The Alliance is managed by HDR UK and many of its activities are funded as part of HDR UK’s 2023-2028 core work to accelerate the trustworthy use of health data for research. It was previously funded by Innovate UK through the Digital Innovation Hub Programme which formed part of the Data to Early Diagnosis and Precision Medicine Challenge.