Pandemic data to be accessed for non-Covid related research

The Department of Health and Social Care (DHSC) is planning to allow researchers to access patient data from the Covid-19 pandemic, despite concerns raised by doctors’ representatives.

A formal direction, ‘GP Data for Consented Research’ has not yet been signed by Wes Streeting, health secretary, but has been shared in draft format with doctors’ reps, POLITICO reported.

It would enable NHS England to disseminate patient data originally collected solely for Covid-19-related research to other studies with patient consent, but GP representatives have expressed worries this will not happen in practice and could erode patient trust.

A spokesperson for the DHSC told Digital Health News that millions of patients have explicitly consented to sharing their data with UK Biobank, Our Future Health and Genomics England, and the planned direction would only allow NHS England to share data when a patient has given consent.

“As the Secretary of State made clear last year during his speech to the Royal College of GPs in October 2024, we are committed to implementing this direction in line with patients’ explicit consent for their data to be used in research.

“We have consulted extensively with GP representatives over the past 18 months to ensure patients’ wishes are respected and their data used appropriately, while minimising the burden on busy GPs,” the spokesperson said.

They added that the draft text was shared with representatives of the Joint GP IT Committee (JGPITC) in April 2025 and the accompanying documentation was clear that GPs would not need to take any action for the direction to come into effect.

However the JGPITC argues that it hasn’t been properly consulted on the change in line with established governance processes, and that repurposing the dataset without asking patients’ permission risks damaging already-fragile public confidence in the profession.

Dr Nicola Byrne, National Data Guardian, told Digital Health News that she has reviewed the work to examine consent processes at the UK Biobank, Our Future Health and Genomics England.

“This work gave me confidence that researchers from these three programmes should be able to use the existing COVID-19 GP dataset to access information about people who have consented to their data being used, so that people’s choices are respected. 

“It is also my understanding that reusing the existing COVID-19 GP dataset is the most pragmatic and cost-effective way to do this,” Byrne said.

She added: “Wherever possible, explicit informed consent, freely given by people, is the best basis for using confidential health information in research.”

Meanwhile, in November 2024, an independent review by Professor Cathie Sudlow, former chief scientist of Health Data Research UK, called for barriers to accessing NHS patient data to be removed so that it can be used to further medical advances.

She said that complexities and inefficiencies impeding the use of health data can delay or prevent hundreds of studies, holding back progress that could improve lives.

Sudlow also noted that data is accessible for Covid-19 research, but not for health conditions such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.