Welcome to the UK Health Data Research Alliance – an independent alliance of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale. 

Five years of partnership and impact from the UK Health Data Research Alliance (image credit: Nada Karrar).

Our mission 

Our mission is to accelerate improvements in biomedicine, health and care by encouraging widespread and responsible use of health-relevant data in a trustworthy, ethical way for research and innovation. 

This is based on three goals:

We also aim to achieve international recognition and influence as a network that enables and demonstrates trustworthy use of health-related data for research and innovation. 

Our Work 

We enable health data research by developing and driving adoption of standards, tools, processes, capabilities and information governance approaches. 

The Alliance does this by bringing expert communities together to drive consensus around best practice and publishing recommendations and papers. 

Our focus is on:  

  • Trust and Transparency – Ensuring communities contribute to streamline and simplify data access while earning public trust in the use of data. 
  • Technology Services – Building a cross-sector community to co-develop technologies and tools for research data infrastructure.  
  • Data Standards – Developing standards and facilitating adoption of existing standards for interoperability and usability of data and seeking agreements on best practice for data curation, management and analysis. 
  • Capacity Building – Identifying skills gaps in the healthcare sector and influencing changes for improving education and professional development. 

Learn more about our work

Our Principles for Participation 

We have a growing membership of more than 100 leading research and healthcare organisations from all four UK nations. 

Organisations involved in the Alliance, or its programmes, sign up to ten principles agreeing to: 

  1. Demonstrate active and ongoing engagement with patients and the public. 
  2. Encourage the availability and use of health and care data for research and innovation that serves public interest. 
  3. Promote the protection of privacy and data security, including providing access to sensitive data through Secure Data Environments. 
  4. Make data Findable, Accessible, Interoperable and Reusable (FAIR) by adopting the FAIR guidelines. 
  5. Take a proportionate approach to data access governance based on the Five Safes framework. 
  6. Maximise the benefits for research and innovation through non-preferential access to data. 
  7. Establish mutually beneficial ways of working in partnership.  
  8. Work collaboratively to increase harmonisation and reduce the complexity of data sharing arrangements. 
  9. Contribute to a joined-up, UK-wide offer for researchers.
  10. Demonstrate transparency in data access processes and of data use.

Learn more about our Principles for Participation

Our Structure 

The Alliance is convened by Health Data Research UK. Set up in 2019, it has been established as a member-led network of partners with a robust governance structure designed to be effective, inclusive and transparent. 

The main elements are:

Learn more about who we are

Our Impact 

Our impact and influence are extensive and growing. Achievements in our first five years included: 

Building Trusted Research Environments (TREs) – Our paper recommending guidelines for data sharing and linkage practice within TREs (also known as Secure Data Environments or SDEs) established the blueprint for trustworthy data access, linkage and research. Its influence on Data Access Policy within the NHS is seen in publications and implementation guidance. 

Improving Trust and Transparency – Our recommendations for improving transparency in the use of health data have led to a rise in the number of custodians publishing information on how their datasets are used, by whom and for what purpose.  

Making Data Findable – Our members agree to adopt the FAIR principles for data management and stewardship when joining. Most data custodians in the Alliance, now publish metadata on the Gateway, which serves as a portal for data discovery and access. NHS England has also pledged to use the Gateway as the ‘single front door’ for the NHS Research SDE Network.  

Learn more about our outputs

Work with us 

We are striving to broaden our membership among health data research stakeholders and to deepen and strengthen existing partnerships.  

Join the Alliance or complete the form below to find out more.