UK poised to open up Covid-era data despite doctors’ fears

LONDON — Britain’s Department of Health is pressing ahead with plans to open up a trove of pandemic-era patient data to outside researchers — despite concerns from doctors’ representatives.

A formal direction titled “GP Data for Consented Research,” yet to be signed by Health Secretary Wes Streeting but shared in draft format with doctors’ reps, would enable NHS England to disseminate patient data originally collected solely for the purpose of Covid-19-related research to other studies.

The Department of Health and Social Care (DHSC) confirmed to POLITICO that the direction has been drafted and is awaiting Streeting’s signature.

A group of doctors has warned the government that the move could erode patient trust. While the direction says government will obtain patient consent to share the data more broadly, doctors groups are worried this won’t happen in practice, and that patients won’t be aware their data is being funneled to other studies.

NHS England has been in discussions with the Joint GP IT Committee, which comprises representatives from the British Medical Association (BMA) and Royal College of General Practitioners (RCGP), about the data, a person close to the talks told POLITICO.

DHSC confirmed it had been in dialogue with the doctors’ groups, and a spokesperson said it had delayed signing the direction in order to engage with doctors’ concerns.

The JGPITC argued 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, the same person said. 

It comes after the same group of doctors filed a formal complaint to the Information Commissioner’s Office in June alleging that NHS England had breached data protection law by training a general-purpose AI model on the same dataset without consent. The disagreement is also set against the wider backdrop of a long-running dispute between government and the BMA over doctors’ pay and working conditions.

DHSC maintains that proper processes have been followed. “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,” a DHSC spokesperson said.

‘Consulted extensively’

In his speech last month, Streeting said he would direct NHS England to take responsibility for sharing patient data with projects including UK Biobank, Genomics England and Our Future Health. “I know there are issues we need to work through together around information governance, risk and liabilities,” he said. “There’s also, let’s be honest, some producer interest in play.”

NHS England asked the JGPITC to confirm whether it was happy with the direction on broadening access to the dataset by Nov. 4. The JGPITC couldn’t reach a consensus to give its blessing to the change, the same person close to the talks and cited above said.

The doctors’ group has pushed for NHS England to notify consenting participants about where their data is going via text or the NHS App, they added. DHSC is not obligated to comply with any of the JGPITC’s requests.

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