Three new members have joined the UK Health Data Research Alliance (the ‘Alliance’) to support its goal of accelerating the use of health data to improve health and care across the UK. The new members will enrich and expand the range of datasets discoverable through the Innovation Gateway. This will include the Neonatal Data Analysis Unit at Imperial College London, who are responsible for the National Neonatal Research Database (NNRD) – an invaluable resource holding information on the neonatal care of over a million babies in England, Wales and Scotland from 2007 onwards.
Improving access to a wealth of neonatal data through the Innovation Gateway with further help facilitate research to improve prevention, treatment and delivery of health services for both mothers and babies. The NNRD provides a uniquely rich source of high quality data that comprises all episodes of a baby’s neonatal journey across different hospitals, providing researchers with a comprehensive picture of their health and clinical care.
Also joining the Alliance are Oxford University Hospitals NHS Foundation Trust (OUH) and the University of Dundee’s Health Informatics Centre (HIC). HIC maintains clinical data relating to around 20% of the Scottish population, combining routinely collected datasets in particular for the Tayside and Fife population (c.800,000). This extends over 30 years and supports researchers as one of The Scottish Governments Safe Havens for data (Trusted Research Environment) based from Ninewells Hospital and Medical School. OUH is a renowned centre of clinical excellence and one of the largest NHS teaching trusts in the UK, bringing a wide variety of datasets to and the Gateway, covering areas ranging from emergency and routine care to microbiology and pathology.
The UK Health Data Research Alliance was formally launched in February 2019, bringing together health data custodians from across the four nations to promote the use of health data to improve care and save lives. Membership of the Alliance is comprised of many of the leading health and research organisations in the country, which aim to make data more easily accessible for researchers and innovators – in a safe and responsible way – maximising research potential and helping to bring benefits to as many people across the UK as possible.
Alliance members provide information about the datasets they hold via the Health Data Research Innovation Gateway, a tool for researchers and innovators to search for data relevant to their work. The three new members will enrich the diversity of data discoverable via the Gateway, bringing in a range of health and care information from across Wales, England and Scotland.
The first phase of the Gateway was launched in January 2020, with information on over 400 datasets from across the UK discoverable so far. Work to develop the second phase of the Gateway is currently underway, with an enhanced tool expected to be available in late 2020.
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.
David Seymour, Partnerships Director at Health Data Research UK said: “It is fantastic that the UK Health Data Research Alliance continues to grow, and we warmly welcome these new members. Each new member brings their different expertise to the Alliance, as well as important datasets that will be very valuable in helping researchers to improve health and care across the UK.”
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:
- 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.
- Working together as one to provide researchers and innovators with services and value that no organisation can deliver on its own.
- Offering a world-leading range of health data science tools, processes and solutions to security, ethics and privacy
- 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.
- 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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