The head of Scotland’s national organisation to improve the way health data is used in research is welcoming an independent review that calls for policymakers to start treating health data as ‘critical national infrastructure’ and to remove some of the barriers and delays experienced by researchers.

The review led by Professor Cathie Sudlow OBE, entitled Uniting the UK’s Health Data: A Huge Opportunity for Society, flags complexities and inefficiencies in how health data is managed in the UK.

Professor Sudlow found that scientists often wait months or years before they can securely access health data they need to carry out crucial research into conditions like dementia, cancer, and heart disease.

She says policymakers and healthcare leaders need to remove barriers, streamline processes, and enable safe and secure data use across the UK – which she says should be seen as critical national infrastructure requiring careful leadership and vital investment.

Professor Roger Halliday, CEO of the national data charity Research Data Scotland, says the report’s findings underline the potential of health data for research:

“The Sudlow Review is a timely reminder of the scale of good that can come from opening access from data for research: providing early and accurate disease diagnosis, improving services and prevention so we can reduce pressure on critical, front-lines services.  

“While the recommendations for improving access to data are for England, they are a strong endorsement of the action taken by the Scottish government to establish Research Data Scotland in the first place and the work that my colleagues and partner organisation across Scotland are doing to reuse and link data for research.  

“Indeed, the report should act as a prompt for us to drive forward the changes still needed for data to be used systematically to save time, money and lives.” 

Professor Sudlow says too many things are getting in the way of people experiencing the benefits from the use of their anonymised health data:

“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 Sudlow says her mission was to map sources of health-relevant data across the UK and recommend how to best manage it to improve health, while maintaining privacy and trust.

The review says datasets hold the most power when they’re linked together. It also emphasises the importance of secure data environments that provide privacy, confidentiality, and security while giving access only to trusted researchers with approved studies.

Among the review’s five recommendations is that national health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of these secure data environments, such as Scotland’s network of data Safe Havens.

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