The UK’s ability to use data to improve health care is under the microscope in an independent review commissioned by the Chief Medical Officer for England and UK Government’s Chief Medical Adviser, Professor Sir Chris Whitty; NHS England’s National Director of Transformation, Dr Timothy Ferris; and the UK’s National Statistician Professor Sir Ian Diamond.
The review, entitled ‘Uniting Health Data in the UK’, is led by the BHF Data Science Centre’s Director Professor Cathie Sudlow OBE. Cathie is also Chief Scientist at Health Data Research UK (HDR UK), the national institute for health data science.
HDR UK works with the NHS and partners across universities, charities, industry and regulators in bringing the UK’s health data together to make discoveries that improve people’s lives.
An exciting time
“This is an exciting time to be involved in health data, but we are still a long way from maximising its potential for benefiting patient care and the public’s health. This review provides an opportunity to chart the course for a new era in health data, mapping existing strengths and identifying ways that our approaches could be improved.”Professor Cathie Sudlow, Director, BHF Data Science Centre
The review will map and assess the flows of health-relevant data across the four nations of the UK, offering an opportunity for policy makers to evaluate how data can be better managed to improve the public’s health, while maintaining privacy and public trust.
Whole Population Data
Population-level health data has the potential to transform research and public health, and the UK is in a unique position thanks to the NHS and its cradle-to-grave records for a population of over 65 million people.
This was shown during the COVID-19 pandemic, where rapid, secure and efficient linkage of data from places such as hospitals, general practices and testing laboratories supported policy makers.
Understanding how to maintain these positive changes and ensure that there is no reversal in the use of data to improve healthcare is at the core of the review, which is expected to be completed towards the end of 2023.
The review will be informed by wide consultation and guided by a panel of leading experts from organisations including NHS England, the Office for National Statistics, the UK Health Security Agency, the Department for Health and Social Care, relevant national organisations in Scotland, Wales and Northern Ireland, and others.
Public and Patient Involvement
Patient groups are being consulted and are actively involved throughout the process, and public and patient voices will be embedded in the governance of the review.
Professor Sir Ian Diamond said, “This is a great time to take stock of where we are, evaluate how our health data systems are set up, and work towards better integration that allows research to continue at pace. All of this has to be done with public interest, trust and transparency at its heart.”
As well as mapping the health-relevant data landscape across the four nations of the UK, the Sudlow Review will also identify barriers to the safe and secure linkage and analysis of data from different sources for public benefit and will recommend solutions, with an initial focus on England.
About Cathie Sudlow
Cathie Sudlow has led large-scale, open-science initiatives for more than 15 years, using population-level data to allow for a better understanding of health and disease. As Director of the BHF Data Science Centre, she helped establish the NHS England National Secure Data Environment, which enables secure access to de-identified data from health settings.
Keep up to date with the Sudlow Review here.
Adapted from a news piece from HDR UK.