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 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:
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
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.
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
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:
Read the full consultation report
