UK to provide research access to NHS patients’ medical histories

Chloe Kent 12 September 2019 (Last Updated September 24th, 2019 11:42)

Seven new ‘data hubs’ are set to revolutionise medical research across Britain, making the medical histories of millions of NHS patients available to doctors, scientists and academics.

UK to provide research access to NHS patients’ medical histories
NHS researchers, universities, and health charities will all have access to the data. Credit: Shutterstock

Seven new ‘data hubs’ are set to revolutionise medical research across Britain, making the medical histories of millions of NHS patients available to doctors, scientists and academics.

The hubs have been established by Health Data Research (HDR) UK, an independent non-profit, and funded by 10 organisations including the NHS National Institute for Health Research and the Wellcome Trust. The initiative brings together 22 universities and research institutes.

Making the information available is intended to bolster the search for cures for ailments like cancer, asthma and mental illnesses by giving researchers access to data about which patients get ill in the first place and who responds best to certain treatments.

Almost 120 public, private, academic and charitable organisations are involved with the hubs, and groups looking to access health information will need to demonstrate the benefits they will bring to patients and the NHS, following government guidelines and HDR UK’s principles for participation.

The seven hubs include a cancer hub, an eye health hub, an inflammatory bowel disease hub, an acute care hub, a clinical trials hub, a respiratory hub, an a hub that aims to use real-world data to improve understanding of many long-term conditions.

Researchers and pharma firms that are granted access will be able to search, discover and request access to the data, which they will be able to use to develop therapies.

HDR maintains that the data – which includes information about patient’s hospital treatments, the results of x-rays and scans, prescription and recovery records – will be completely anonymised.

Speaking to the Guardian, HDR director Dr Andrew Morris said: “Any decisions about how the data will be used will always put patient privacy, safety and benefit first and we have multiple safeguards in place to ensure this happens.

“The NHS organisations involved will, at all times, remain the data controllers and no personal data will leave the NHS.”