A review of health data commissioned by NHS England has highlighted the existence of barriers to the effective use of data in the health and care system.
The Sudlow Review, led by Professor Cathie Sudlow, has also come up with five recommendations for developing a secure and trusted health data system for England.
Titled Uniting the UK’s Health Data, it was commissioned by the chief medical officer for England, NHS England’s national director for transformation and the UK national statistician.
It says that scientists often have to wait months or even years to securely access health data before they can carry out crucial research into conditions like dementia, cancer, and heart disease.
The data is widely spread across multiple sources, both within the NHS and wider systems, and needs to be identified and brought together. This includes non-medical data from other parts of government.
But most of the data sources are not designed to be analysed together, even when doing so is clearly in the interests of current and future patients.
There are also concerns over data safety and privacy that have an effect on public support, the review says.
Recommendations
Its recommendations include that major national public bodies with responsibility for or interest in health data should agree a coordinated strategy to recognise England’s health data as part of its critical national infrastructure. This would involve signing a commitment to actions such as coordinating long term planning and investment in the infrastructure and reducing the complexity of the ecosystem.
Second is that government health, care and research bodies should establish a national health data service in England with accountable senior leadership. This would be accompanied by laying a roadmap for data services and the provision of datasets, providing regional infrastructures and an overall governance structure, and working with the devolved nations.
Third is that the Department of Health and Social Care should oversee and commission engagement with patients, the public, health professionals, policy makers and politicians; and fourth that the health and social care departments in the four nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance.
Finally, there should also be a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system. This reflects the growing use of SDEs in recent years.
Not maximising benefits
Sudlow – who has been chief scientist and deputy director of Health Data Research UK and director of the British Heart Foundation Data Science Centre – commented: "We are simply not maximising the benefits to society from the rich abundance of health data in the UK.
“Far too often research about health conditions affecting millions of people across the UK is prevented or delayed by the complexity of our data systems. We are letting patients and their families down as a result.
“This review shows that getting this right holds a great prize, for our own care and for an effective NHS. We need to recognise our national health data for what they are: critical national infrastructure that can underpin the health of the nation."
Professor Sir Chris Whitty, chief medical officer for England, said: “Using data from multiple sources is essential to improve current patient care, make the NHS more effective and improve outcomes for future patients through research. This report will help us use data more effectively for current and future patients, whilst maintaining patient confidentiality.”
