The Division of Well being and Social Care (DHSC) is planning to permit researchers to entry affected person information from the Covid-19 pandemic, regardless of considerations raised by docs’ representatives.
A proper route, ‘GP Information for Consented Analysis’ has not but been signed by Wes Streeting, well being secretary, however has been shared in draft format with docs’ reps, POLITICO reported.
It could allow NHS England to disseminate affected person information initially collected solely for Covid-19-related analysis to different research with affected person consent, however GP representatives have expressed worries this is not going to occur in follow and will erode affected person belief.
A spokesperson for the DHSC instructed Digital Well being Information that hundreds of thousands of sufferers have explicitly consented to sharing their information with UK Biobank, Our Future Well being and Genomics England, and the deliberate route would solely permit NHS England to share information when a affected person has given consent.
“Because the Secretary of State made clear final 12 months throughout his speech to the Royal School of GPs in October 2024, we’re dedicated to implementing this route in step with sufferers’ express consent for his or her information for use in analysis.
“We now have consulted extensively with GP representatives over the previous 18 months to make sure sufferers’ needs are revered and their information used appropriately, whereas minimising the burden on busy GPs,” the spokesperson stated.
They added that the draft textual content was shared with representatives of the Joint GP IT Committee (JGPITC) in April 2025 and the accompanying documentation was clear that GPs wouldn’t have to take any motion for the route to return into impact.
Nevertheless the JGPITC argues that it hasn’t been correctly consulted on the change in step with established governance processes, and that repurposing the dataset with out asking sufferers’ permission dangers damaging already-fragile public confidence within the career.
Dr Nicola Byrne, Nationwide Information Guardian, instructed Digital Well being Information that she has reviewed the work to look at consent processes on the UK Biobank, Our Future Well being and Genomics England.
“This work gave me confidence that researchers from these three programmes ought to be capable to use the prevailing COVID-19 GP dataset to entry details about individuals who have consented to their information getting used, so that individuals’s decisions are revered.
“It is usually my understanding that reusing the prevailing COVID-19 GP dataset is essentially the most pragmatic and cost-effective method to do that,” Byrne stated.
She added: “Wherever attainable, express knowledgeable consent, freely given by folks, is the very best foundation for utilizing confidential well being info in analysis.”
In the meantime, in November 2024, an impartial assessment by Professor Cathie Sudlow, former chief scientist of Well being Information Analysis UK, known as for boundaries to accessing NHS affected person information to be eliminated in order that it may be used to additional medical advances.
She stated that complexities and inefficiencies impeding the usage of well being information can delay or stop tons of of research, holding again progress that might enhance lives.
Sudlow additionally famous that information is accessible for Covid-19 analysis, however not for well being situations akin to different infectious ailments, most cancers, coronary heart illness, stroke, diabetes and dementia.
