Nine more health care and research organisations 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 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 Longituninal Study of Parents and Children (ALSPAC), also known as 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.
Set up in 1991, Children of the 90s recruited 14,500 pregnant women from the Bristol area and has been charting their health, plus that of their children and grandchildren, ever since. Almost thirty years later the study is now recognised as the premier multi-generational birth cohort internationally, with an outstanding reputation for enabling research.
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.
The new members are:
- Avon Longitudinal 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
- University Hospitals Leicester NHS 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.
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.”
Health Data Research UK
Notes to editors:
The UK Health Data Research Alliance is not a data controller. It is an independent Alliance of health data controllers and acts as an unincorporated, not-for-profit and cost neutral association. The Alliance encourages widespread access and use of health data to advance human health by:
i. Being patient and public centred: building trust by supporting and promoting the responsible sharing of health data, respecting data sharing and privacy preferences of participants, and using best practices in public outreach, security, ethics, and regulation.
ii. Working together as one to provide researchers and innovators with services and value that no organisation can deliver on its own.
iii. Offering a world-leading range of health data science tools, processes and solutions to security, ethics and privacy
iv. Being committed to innovation to improve customer service and responding to the needs of health data users who are doing the science and innovations: making data faster and less expensive to find and access by harmonising, simplifying and making transparent policies, standards and codes of conduct for the storage, analysis and responsible access of data.
v. Establishing technology and ways of working to increase use of and insights from data: building trust and effective ways of working among stakeholders, making datasets available to use on a versatile, secure information platform, making tools and models available, adopting best practices in governance and commercial models to develop an ecosystem that accelerates progress.
UK health organisations are encouraged to contact Health Data Research UK to discuss joining the Alliance. For further information visit ukhealthdata.org
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