Increased collaboration driving a unified approach to use of health data for research
The UK Health Data Alliance has welcomed thirteen new organisations at its quarterly board meeting on 20 October, bringing the total number of members to 61.
The new member organisations to join are:
Our Future Health will be the UK’s largest ever health research programme, bringing people together to develop new ways to detect, prevent and treat diseases.
ICNARC is an independent, not-for-profit, scientific organisation that manages a national programme of clinical audit and clinical/health services research to facilitate improvements in the structure, process, outcomes and experiences of intensive/critical care – for patients and for those who care for them.
DataLoch is a new collaboration between the Southeast Scotland region’s Local Authorities, NHS health boards and The University of Edinburgh that will bring together and improve data that will help generate insights and innovation in health and social care.
The London Medical Imaging & AI Centre for Value-Based Healthcare is a consortium of academic, NHS and industry partners led by King’s and based at St Thomas’ Hospital. It includes diverse research teams training sophisticated artificial intelligence algorithms from a vast wealth of NHS medical images and patient pathway data to create new healthcare tools.
PathLAKE is part of a network of five new Centres of Excellence in digital pathology and medical imaging. Through the digitisation of five major NHS laboratories and the formation of a computational pathology hub, it will drive AI innovation in pathology for the UK and create the world’s largest depository of annotated digital whole slide images.
The Industrial Centre for Artificial Intelligence Research in Digital Diagnostics (iCAIRD)
iCAIRD brings together a pan-Scotland collaboration of 15 partners from across industry, the NHS, and academia; including four current actively engaged SMEs. Industry leadership is provided by Canon Medical Research Europe (radiology) and Royal Philips (digital pathology).
DATAMIND is one of Health Data Research UK’s (HDR UK’s) nine Health Data Research Hubs. DATAMIND is making the best use of the UK’s rich mental health data by allowing researchers and other users to find and use that data, enabling coordinated research with the ultimate aim of improving mental healthcare in the UK.
The BHF Data Science Centre is a partnership between the British Heart Foundation and Health Data Research UK which enables researchers to access and use health data from across the UK in the best way possible to improve the public’s cardiovascular health.
- Royal Devon and Exeter NHS Foundation Trust
- Oxford Health NHS Foundation
- Cambridge University Hospitals
- University Hospitals Bristol and Weston NHS Foundation Trust
- Lancashire Teaching Hospitals
Members of the Alliance come from across the healthcare and research sector, including the NHS, medical research charities, academia, health data research hubs and AI Centres of Excellence. Member organisations work together to develop and coordinate the adoption of standards, tools and technologies for the trustworthy use of data in health research.
The Alliance’s work to develop a unified and standardised approach to the use of health data across the UK and increase the range and quality of data that is available has delivered notable benefits for research and innovation.
This year has seen the joint production and publications of Green Papers on key issues for the sector, including the alignment of approach on the use of Trusted Research Environments (TREs), policy on Data Standards and how to engage and involve patients and members of the public to improve transparency and demonstrate trustworthiness; based on recommendations from HDR UK’s Public Advisory Board.
Over 700 datasets are represented on the Health Data Research Innovation Gateway (the ‘Gateway’).
In coming weeks, new members will join with existing Alliance partners, collaborating and contributing to projects that will continue this drive. As well as the forthcoming publication of White Papers on Trusted Research Environments and Data Standards, the Alliance will also be publishing its recommendations for a consistent standard for Data Use Registers; and launching the service that puts these principles into practice, allowing Alliance members to host and manage their Data Use Registers via the Gateway.
Alliance member organisations will also continue to make the datasets they host as “custodians” available to be listed on the Gateway, the UK’s unified platform to discover and request access to health data. This demonstrates their commitment to increasing safe access to health data for research that has the potential to deliver significant public benefit, as we have seen during the pandemic.
Each of these activities are important components in achieving our shared vision to unite the UK’s health datasets; thereby improving the ability for researchers to discover, access and analyse data to enable the insights that will ultimately improve healthcare for patients.
David Seymour, Alliance Executive Director, Health Data Research UK said: “ The continued growth in members enriches the Alliance. It is testament to the value of working together across the sector. By co-ordinating our approach to standards, tools and technologies, we will continue to improve how we make health data available in an efficient, secure and trustworthy way for research and development that can change people’s lives. I look forward to working with our new and existing members on our programme of work in the coming months.”