Our History 

The UK Health Data Research Alliance was established in February 2019, as a member-led network of data providers, custodians and curators 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. 

It took inspiration from other global alliances, such as the Global Alliance for Genomics and Health (GA4GH) and the World Wide Web Consortium (W3C) who unite international communities to develop frameworks and standards around best practice.  

The Letter of Intent 

The Alliance ‘constitution’ is set out in the Letter of Intent signed by all organisations joining the Alliance. The Letter outlines the background of the Alliance, the founding and operating principles and the composition and governance of the Alliance. 

The Principles of Participation of the Alliance provide a framework of collaborative and open working practices, drawing from national and international best practice frameworks and recommendations, including the FAIR Guiding principles for scientific data management and the Five Safe framework. 

Read the Letter of Intent  

Alliance consultation and change to governance  

In March 2023, a full review of the Alliance governance was carried out by the secretariat, along with an extensive consultation with Alliance members and partners. Following this, several key changes were approved by the Board: 

  • Alliance membership extended to non-data custodians complementary groups and organisations, such as Patient and Public Involvement and Engagement groups, Industry Trade Associations, funders, regulatory bodies. 
  • An Alliance Executive Committee representative of the membership was established.  
  • The Alliance Board and associated convening role will be maintained through an Alliance Council.  
  • The Alliance Principles for Participation and Letter of Intent will continue to underpin the Alliance ‘ethos’ and will be updated to reflect the agreed changes. 

Read the full consultation report 

Our Structure 

The Alliance is convened by Health Data Research UK and has a robust governance structure designed to be effective, inclusive and transparent. The main elements are:  

Alliance Executive Committee  

The Executive Committee was established in September 2023 to shape the strategy and development of the Alliance, as well as guide improvements in the areas of technology services ecosystems, trust and transparency, data usability and capacity building. The Committee ensure that Alliance activities are in alignment with strategies across all areas of the health data ecosystem.  It is responsible to the Alliance membership, represented through the Alliance Council.   

The Committee is chaired by David Seymour, HDR UK’s Director of Infrastructure and Services and includes individuals representing the diversity of Alliance member organisations and strategic partners. Find out more about the individuals on the Committee here 

Read the Executive Committee Terms of Reference

Alliance Council 

The Alliance Council convenes representatives from Alliance member organisations from all over the UK, each of which brings experience in domains relevant to its mission along with an outstanding record of and commitment to serving the public good.  

The Alliance Council ratifies recommendations and proposals developed by the Alliance Executive Committee and through relevant work area steering groups. 

Meeting Reports and Outputs

Alliance Executive Committee  Type of Output   Publication Date 
Alliance Executive Committee 3rd Meeting Summary  16.04.2024 
Alliance Executive Committee 2nd Meeting Summary  04.12.2023 
Alliance Executive Committee Inaugural Meeting Summary  14.09.2023 
Alliance Council   Alliance Council January 2024 Meeting Report   17.01.2024 
Alliance Council October 2023 Meeting Report   10.10.2023 
Alliance Council July 2023 Meeting Report   13.07.2023 
Alliance Council April 2023 Meeting Report   28.04.2023 
Alliance Council January 2023 Meeting Report   26.01.2023 
Alliance Council October 2022 Meeting Report   14.10.2022 
Alliance Council July 2022 Meeting Report   20.07.2022 
Alliance Council April 2022 Meeting Report  12.04.2022 
Alliance Council January 2022 Meeting Report   26.01.2022 
Alliance Council October 2021 Meeting Report  20.10.2021 
Alliance Council July 2021 Meeting Report  14.07.2021 
Alliance Council April 2021 Meeting Report  27.04.2021 
Alliance Council January 2021 Meeting Report  21.01.2021