University Hospitals of Leicester joins alliance for health data research
Nine health care and research organisations, including University Hospitals of Leicester NHS Trust, have signed up to join the UK Health Data Research Alliance to accelerate health discoveries using data in research. This boosts the Alliance membership to a total of 27 members – with over 400 datasets – each committing to make its data accessible for responsible research and innovation to benefit patients across the UK.
The other new members include the first mental health trusts to join the Alliance (South London and Maudsley NHS Foundation Trust and Nottinghamshire Healthcare NHS Foundation Trust), a specialist children’s hospital (Great Ormond Street NHS Foundation Trust) and the Avon Longitudinal Study of Parents and Children (ALSPAC), which runs the Children of the 90s study.
By joining the Alliance, these members will boost the diversity of data being made available for research, and with the UKCRC Tissue Directory and Coordination Centre also signing up the Alliance will be able to facilitate increased use of data and human samples together by researchers to enable discoveries that can change people’s lives.
Established in February 2019 by Health Data Research UK, the Alliance will help researchers to answer some of the most difficult questions and address the most important health challenges faced in the UK through better access to health data. These new members offer an exceptional opportunity to provide access to rich and diverse health data for research and innovation.
Research based on data that reflects diversity of culture, health conditions and aspects such as race, ethnicity, gender and age improves the ability to generalise results and enables new discoveries and understanding about disease. In turn this provides fairer and more equal access to the latest treatments and medical technologies, benefiting as many people across the UK as possible.
Professor Andrew Morris, Director of Health Data Research UK and Chair of the Alliance Board, said:
“We are delighted to welcome these new members to join the UK Health Data Research Alliance. Each brings high value datasets as well as new approaches to developing tools and techniques to use diverse health data at scale to make improvements to people’s lives through research.”
Andy Carruthers, Chief Information Officer at University Hospitals of Leicester NHS Trust, said:
“Supporting the initiative to make health data available for researchers is a priority for our Trust as part of embedding research, so we can accelerate the development of new treatments and care pathways and better understand how disease progresses at population level. By joining the HDR UK Alliance, we are demonstrating our commitment to open data standards and excellence in managing patients’ data confidentially. This is an exciting opportunity working with our Midlands health and academic partners and also gives us the ability to contribute to exciting national initiatives.”
The new members are:
- University Hospitals Leicester NHS Trust
- Avon Longituninal Study of Parents and Children (ALSPAC)
- Guy’s & St Thomas’ NHS Foundation Trust
- Great Ormond Street Hospital for Children NHS Foundation Trust
- Human Fertilisation and Embryology Authority
- Nottinghamshire Healthcare NHS Foundation Trust
- South London and Maudsley NHS Foundation Trust
- University College London Hospitals NHS Foundation Trust
- UKCRC Tissue Directory and Coordination Centre
The UK Health Data Research Alliance develops and co-ordinates the adoption of tools, techniques, conventions, technologies, and designs that enable the use of health data in a trustworthy and ethical way for research and innovation. Its members formulate best practice and standards in areas such as privacy, transparency, public engagement, inclusivity and governance to ensure that health data is shared and used responsibly by researchers and innovators. Any requests to access data held by Alliance members for research and innovation will continue to go through their existing protocols to ensure strict security and data privacy.