The UK Health Data Research Alliance was established in 2019 as an independent alliance of health data providers, custodians and curators dedicated to improving human health by maximising the potential of data to accelerate progress in biomedicine, health and care.
The Alliance is made up of partner organisations (members) 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. Members are committed to improving access to data for research that benefits the public across cohorts, biobanks, NHS trusts, national agencies and programmatic investments.
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 underpinning the ‘ethos’ 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.
The main objective of the Alliance is to bring communities together to develop common standards, formats, technologies and tools for the best use of health data, and to drive alignment of practices across the UK reducing duplication of efforts. Bringing parties together facilitates for the first time a federated and coordinated approach to health data research infrastructure.
Key outputs from the Alliance are summarised here.
The significant growth in the number of Alliance members over the last three years, the evolving health data ecosystem and the changes to funding for the Alliance Secretariat have indicated that it is timely to review the current Alliance governance and ways of working.
Following both a full review of the Alliance governance by the Secretariat and an extensive consultation with Alliance members and partners, the Board approved the following key changes:
- Alliance membership will be extended to non-data custodians complementary groups and organisations to extend influence and reach, increase coherence and reduce duplication.
- The Alliance will engage with Industry Trade Associations, to ensure input of life sciences and technology companies on building a research data infrastructure while maintaining public trust.
- An Alliance Executive Committee representative of the membership will be established. The Executive Committee will 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 current Alliance Board and associated convening role will be maintained through an Alliance Council. The Alliance Council will ratify recommendations and proposals developed by the Alliance Executive Committee and through relevant work area steering groups.
- 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.
Over the next three months, the Alliance Secretariat will work with members to ensure implementation of the proposed changes. In particular:
- We will hold the first Alliance Council meeting on 28thApril 2023.
- We will review the landscape and identify key complementary partner organisations who could contribute to the Alliance work, including regulatory bodies, charities, industry trade associations and research funders.
- We will present a proposal to appointment of the Alliance Executive Committee at the first Alliance Council meeting.
We the hope that the new governance structure and improved ways of working will strengthen the partnership and collaboration needed to maximise the potential of health-relevant data and accelerate progress in biomedicine, health and care in the UK and beyond.
With a community-led Alliance, made up of key players within the health data ecosystem, we look forward to contributing to the development of a trustworthy health data research infrastructure, open to all users who have the potential to deliver public benefit through their use of health relevant data and upholding the highest standards of responsible data use.
Interested in joining the Alliance?
For more information about the Alliance areas of work or to join the Alliance contact UKAlliance@hdruk.ac.uk