Plans for the NHS to share data about patients’ medical histories taken from their GP records have been delayed after an outcry from MPs, doctors and health charities.
The rollout of the new scheme in England has been put back from 1 July to 1 September to give the NHS more time to address concerns about patients’ privacy being breached.
Jo Churchill, a health minister, disclosed the delay to MPs on Tuesday. She insisted that the two-month pause would allow the plan to be “strengthened” and work undertaken to “ensure that data is accessed securely”.
Patient groups, medical organisations, Labour and the information Commissioner welcomed the move, which came after mounting controversy about the scheme. NHS Digital said the unprecedented collation of data would boost medical research and improve population health.
Under the General Practice Data for Planning and Research programme NHS Digital, the health service’s statistical and IT agency, is due to collect information stored on family doctors’ IT systems on the treatment, referrals to hospital and appointments people have had over the last 10 years, as well as details of their mental health, drugs taken and diagnostic tests taken, unless patients opt out.
Patients had been given until 23 June to exercise their right not to have the details of their NHS care uplifted. However, critics warned that the secretive way the scheme was first acknowledged, by both NHS Digital and health secretary, Matt Hancock, means that many people would have been unaware that the programme was starting on 1 July and they could refuse to be included.
“Today’s announcement is an important win for patients, family doctors and the British Medical Association”, said Dr Farah Jameel, a member of the BMA’s GP committee executive and its IT lead.
“While the BMA understands that data sharing plays a key role in planning and research as well as developing treatments, we also know that the crux of the GP-patient relationship relies on trust, transparency and honesty, and therefore allowing the public to make fully informed decisions is paramount.”
Explaining the delay, Churchill told MPs: “Data saves lives, it’s as simple as that. We’ve seen that in the pandemic; it’s one of the lessons of the vaccine rollout.
“The GP data programme will strengthen the system and save lives and patient data is of course owned by the patient.
“And we are absolutely determined to take people with us on this journey. We have therefore decided we will proceed with the important programme but we will take some extra time.”
Elizabeth Denham, the information commissioner, welcomed the two-month pause. But, she added, that there is still “considerable confusion regarding the scope and nature” of the scheme, which critics have dubbed a risky “data grab”.
Patient groups, including the Patients Association and Healthwatch England, said that while research showed that patients were happy for the NHS to use their data for medical research, “ongoing public support for this depends on complete transparency and clear communication from the NHS when things change.” It urged ministers and the NHS to undertake “a proper nationwide campaign” over the next few weeks so that patients can make an informed choice about whether or not to participate.
Simon Bolton, NHS Digital’s chief executive, said: “We are absolutely determined to take people with us on this mission. We take our responsibility to safeguard the data we hold incredibly seriously.”
His colleague Dr Peter Short – the agency’s clinical lead for the scheme – speaking to the Health Service Journal on Monday, before the delay was unveiled, had warned that pressing ahead with the rollout, in the face of GPs raising “eminently reasonable” concerns, would have been “intensely damaging” for public trust in doctors.
Alex Norris, Labour’s minister for public health and primary care said that the scheme should only be launched after the public have had their say.
“This is a welcome decision, but it was only achieved after overwhelming pressure from patients, and health professionals alike.
“This must now mean that all elements, including the opt-out, are delayed and there must be a full public consultation about this issue before the data collection is resumed.”
Patients had been given until 23 June to exercise their right not to have the details of their NHS care uplifted. A new deadline has not yet been announced.