The Sudlow Review (UK): “…Surveys show that people in the UK overwhelmingly support the use of their health data with appropriate safeguards to improve lives. One of the review’s recommendations calls for continued engagement with patients, the public, and healthcare professionals to drive forward developments in health data research.
The review also features several examples of harnessing health data for public benefit in the UK, such as the national response to the COVID-19 pandemic. But successes like these are few and far between due to complex systems and governance. The review reveals that:
- Access to datasets is difficult or slow, often taking months or even years.
- Data is accessible for analysis and research related to COVID-19, but not to tackle other health conditions, such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.
- More complex types of health data generally don’t have national data systems (for example, most lab testing data and radiology imaging).
- Barriers like these can delay or prevent hundreds of studies, holding back progress that could improve lives…
The Sudlow Review’s recommendations provide a pathway to establishing a secure and trusted health data system for the UK:
- Major national public bodies with responsibility for or interest in health data should agree a coordinated joint strategy to recognise England’s health data for what they are: a critical national infrastructure.
- Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership.
- The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians.
- The health and social care departments in the four UK nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance.
- National health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system…(More)”.