'Misinformation' Threat to Delayed GP Data Sharing Scheme

Peter Russell

June 10, 2021

Members of the medical and social research community have spoken out in support of NHS Digital's GP Data for Planning and Research (GPDPR) programme after the Government confirmed rollout would be paused for 2 months over privacy concerns and worries that it had been poorly explained to patients and doctors.

A statement backed by 120 individuals from universities, research charities, and other institutions said the trustworthy use of patient data would enable better care, better treatments, and better outcomes, and expressed concern that it had been portrayed as a "data grab".

NHS Digital had planned to start collecting data from July 1 from GP medical records, but a delay until September 1 was announced on Tuesday by health minister Jo Churchill following lobbying by the Royal College of GPs and the British Medical Association.

Both bodies argued in favour of an in-depth public information campaign to give patients a chance to decide whether to participate or opt-out.

In a statement on Tuesday, NHS Digital promised to consult with patients, doctors, health charities and others "to strengthen the plan even further".

"We are absolutely determined to take people with us on this mission," said Simon Bolton, CEO of NHS Digital. "We take our responsibility to safeguard the data we hold incredibly seriously," he added.

'Small, Vocal Minority'

Prof Cathie Sudlow/SMC

Professor Cathie Sudlow, director of the BHF Data Science Centre, told a briefing hosted by the Science Media Centre that "a small but vocal minority of campaigners is behind the circulation of misinformation about this new and improved primary care data collection".

She said it was "really important to be clear that NHS Digital only provides access to data for approved organisations to support health care planning and research for public benefit".

The joint statement said that data collection had allowed the NHS to identify and protect millions of people at high risk from COVID-19, to deliver and monitor the safety and effectiveness of the COVID-19 vaccination programme, and to identify life-saving treatments for COVID-19, including dexamethasone.

It said the inclusion of GP data would inform a wider range of research, including into mental illness, cancer, heart disease, and diabetes.

'Misinformation'

Prof Sir Rory Collins/SMC

Professor Sir Rory Collins, principal investigator and chief executive for the UK Biobank project, warned there was a risk that GPDPR could potentially be "derailed by misinformation". The current system of data collection meant that GP practice data was already held by private companies "without all of the checks and the independent oversight that exists with NHS Digital," he said.

"We read about GPs saying the data mustn't leave the practice," he added. "I'm afraid it left the practice many years ago. It's held by commercial systems suppliers."

Experts agreed that the delay in implementing GPDPR would be an opportunity to win trust in the scheme. Dr Natalie Banner, lead for Understanding Patient Data, said the existing information campaign "is not going to be enough to demonstrate that NHS Digital is a trustworthy steward of the nation's GP data".

She said: "We have to remember this is data that has been collected in the context of a confidential relationship between a patient and a clinician" and that "for all of the security and pseudonymisation measures that may be in place, people still have a stake in how it's used, and they feel that very deeply."

It was "essential to demonstrate trustworthiness", the medical and social researchers said.

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