Labour has urged the NHS and Matt Hancock to pause their plan to share medical records from GPs to allow time for greater consultation on how the idea would work, saying that maintaining patients’ trust must be paramount.
In a letter to the head of NHS Digital and the health secretary, the shadow public health minister, Alex Norris, said Labour backed the principle of improved data collaboration but shared the concerns of some doctors’ groups.
The Royal College of General Practitioners warned NHS Digital a week ago that plans to pool medical pseudonymised records on to a database and share them with academic and commercial third parties risked affecting the doctor-patient relationship.
NHS Digital needed to explain the plans better to the public, the group said, as well as outlining how people could opt out.
The British Medical Association (BMA) has also called for a pause to the General Practice Data for Planning and Research scheme. Another group, the Doctors’ Association, said it was worried it would “erode the doctor/patient relationship, leaving patients reluctant to share their problems due to fears of where their data will be shared”.
In a letter to Sarah Wilkinson, chief executive of NHS Digital, copied to Hancock, Norris said the coronavirus pandemic had demonstrated the benefits of sharing knowledge between various health sectors.
He wrote: “However, for data sharing to work, it must be built on trust. I share the concerns that have been voiced by the Royal College of General Practitioners (RCGP) and Doctor’s Association UK about the lack of communication with patients on this issue, and on the lack of consultation. Without consultation and clear communication with patients, trust in this process is undermined.
“For these plans to be effective, and confidence in their doctors and the wider NHS to be maintained, it is vital that patients whose data will be shared have a clear understanding of this process.”
Norris said there was a need in particular for greater public information on what data would be made available and who would be able to access it, as well as limits and safeguards for its use, and how people could opt out.
This must be a central effort, rather than just being left to individual GPs, to ensure a consistent message, he said, and given the current “confusion and lack of transparency”, the scheme would be paused ahead of both a public information campaign and a consultation.
Under the system, data from GP surgeries from England from up to 10 years ago would be extracted to a central, anonymised database, with new information added as it comes in to doctors.
While the NHS says data will be used for planning and research purposes, some private sector organisations will be able to see it, with approval from advisory groups. Patients can opt out if they do so before 23 June.
A government spokesperson said: “Patient data saves lives, and we could not have delivered the Covid-19 vaccine rollout if we had not used data to ensure we reach the whole population.
“The new programme for collecting data has been developed in collaboration with doctors, patients and data, privacy and ethics experts to improve systems for data collection.
“We continue to engage with the BMA and RCGP, and remain committed to being transparent with patients and the public about the collection and use of data.”