Editor's note, 8 June 2021: This article was updated after a delay to the project was announced.
NHS Digital succumbed to pressure from health bodies and politicians by delaying its GP Data for Planning and Research (GPDPR) programme pending more effective communication with doctors and patients about the new arrangements for data collection.
The scheme, which was due to start on July 1, has now been pushed back to September 1.
It followed intense lobbying by the Royal College of General Practitioners (RCGP) and the British Medical Association (BMA) who criticised a lack of publicity about the initiative ahead of the June 23 deadline for patients in England to opt out if they wished.
Both bodies were concerned that a poorly understood scheme could undermine patient trust in doctors.
NHS Digital planned to start collecting data next month from GP medical records which it said would be used to help the NHS improve and shape future health and care services.
NHS Digital said GP data would undergo a process known as 'pseudonymisation', which means that information would be coded to prevent individuals being identified without a key that links the data to the patient.
However, Labour called for implementation to be delayed because of concerns around privacy.
The Shadow Minister for Public Health and Primary Care, Alex Norris, wrote to England's Health Secretary, Matt Hancock, this week saying: "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."
Announcing the delay on Tuesday, Simon Bolton, CEO of NHS Digital, said they were "absolutely determined to take people with us on this mission", and that "we take our responsibility to safeguard the data we hold incredibly seriously".
Mr Bolton promised to "use the next 2 months to speak with patients, doctors, health charities, and others to strengthen the plan even further".
Questioned about the GPDPR programme in the Commons by Robert Largan (Con, High Peak), junior Health Minister Jo Churchill said: "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 roll-out."
However, she pledged to "build a trusted research environment and ensure that data is accessed securely".
Commenting on the decision to delay, the BMA tweeted that it would "allow for better public engagement" and was "good news for patients".
The RCGP said on Twitter that the delay should be used to "properly communicate with the public so patients and GPs understand and trust the programme".
The GPDPR programme would be a replacement for the General Practice Extraction Service (GPES), which has operated for more than 10 years.
Patients can prevent their data being shared outside a GP practice by choosing a Type 1 opt-out, which requires them to file a form by the cut-off date.
Last month, the RCGP and the BMA wrote to Richard Alcock, director of primary care technology at NHS Digital, urging him to communicate more fully with patients and inform them of their options. It said making information to patients available in surgeries was "an ineffective addition, especially given continued social distancing restrictions which limits the numbers of patients attending their GP practice in person or spending time in waiting rooms".
Last Friday, the RCGP sent a letter to England's Health Secretary, Matt Hancock, calling for an immediate delay to the programme to allow time for a public information campaign and for patients to make informed decisions including the right to opt out.
The RCGP said that while it "supports the principle of improved and more secure sharing of data for legitimate healthcare planning and research purposes", safeguards must be in place to guard against inappropriate uses of the data, while sharing of the data "must be transparent and maintain public trust in how general practice and the NHS more widely uses their information".
The College also pointed out to Mr Hancock that at a time of high workload, as well as a focus on the COVID-19 vaccination programme, it was unrealistic to expect GPs to communicate with patients on the issue.
The BMA also reiterated its concerns, and urged delay. Dr Farah Jameel, a GP committee executive team member, who leads on IT, said: "Unclear messaging and a complete failure to develop a wide ranging and far-reaching public engagement plan to communicate with the population has resulted in a completely unrealistic expectation that GPs are left to communicate these complex changes.
"Rushing through such fundamental changes to confidential healthcare data, losing the confidence of the public and the profession, will severely undermine the programme and threaten any potential benefits it can bring to healthcare planning and research."
Planning Care and Aiding Research
NHS Digital said that GPDPR research data would help the NHS:
- Monitor the long-term safety and effectiveness of care
- Plan how to deliver better health and care services
- Prevent the spread of infectious diseases
- Identify new treatments and medicines through health research
It said that GPs already share patient data for those purposes but that the new system will be more efficient and effective.
Data collected would include sex, ethnicity, sexual orientation, clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, and appointments, including information about a person's physical, mental and sexual health.
NHS Digital said it would not collect the names and addresses of patients, except for a postcode in a coded form.
It said that the pseudonymisation process would mean that no one would be able directly to identify a patient from the data, although NHS Digital would be able to use the same software to convert the codes back to the original data "in certain circumstances, and where there is a valid legal reason".
In a recent blog, Arjun Dhillon, NHS Digital's clinical director, said: "We don't sell any data and will never provide data for insurance, marketing or promotional purposes – or for anything other than healthcare research and planning," he wrote.