Update: Government to delay controversial NHS data sharing plan

Government promises extra time as opposition to 'data grab' grows

Update 13.00 BST: Jo Churchill MP, Parliamentary Under-Secretary for Health and Social Care, announced to the House of Commons that the plan to extract patient data from GP records is to be delayed until 1 September to allow an opportunity for further communication.

"We are absolutely determined to take people with us on this journey, so we have decided to proceed with the important programme, but we will take some extra time, as we have conversed with stakeholders over the past couple of days. The implementation date will now be 1st September, and we will use this time to talk to patients, doctors, health charities and others to strengthen the plan, build a trusted research environment and ensure data is accessed securely," she said.

Previous headline: Doctors groups and Labour urge NHS Digital to delay plan to extract patient data from GP records

Prominent medical groups have urged NHS Digital and the government to delay plans for a major data extraction programme that aims to move information from GP records in England to a centralised NHS Digital database.

The initiative, dubbed the General Practice Data for Planning and Research (GPDPR), was announced in May 2021, with NHS Digital, the IT and data services arm of the NHS, saying that the plan is to transfer data from patient records in England created up to 10 years ago in "near real time".

The data will be used for a "wide variety of research and analysis to help run and improve health and care services," according to NHS Digital.

Under GPDPR, a range of information, including details of gender, ethnicity, sexual orientation, along with other data from patient records held on GPs' systems will be gathered into a database and made available to approved researchers and private commercial organisations. However, it will exclude any personally identifiable details such as patient names, addresses, images or details of conversations. GPDPR does not apply in Scotland, Wales or Northern Ireland.

The new service is due to come into effect on 1 July 2021, with citizens having until 23 June to request a 'Type 1' opt out. After this date it will not be possible to prevent existing information in GP records being collected, although collection new information can be opted out later.

NHS Digital says it will pseudonymise sensitive data fields, although it retains the key to decrypt them.

The British Medical Association (BMA) and Royal College of General Practitioners (RCGP) are unhappy with the rollout of GPDPR, stating that it is being implemented too quickly, without enough consultation.

On Monday, the RCGP wrote a letter to Health Secretary Matt Hancock, urging him to delay the plan for the next few months.

Meanwhile GPs are complaining they are overwhelmed by requests from patient to help them opt out of the programme before the deadline. The Type 1 opt-out forms, which need to be downloaded and posted, emailed or handed into a GP surgery, no longer appear to be available from the NHS Digital website and instead must be downloaded from campaigning organisations like medConfidential - which describes the scheme as a 'data grab' - or requested from GP surgeries.

"The job of informing the public must not be left to busy GPs, especially at a time of extreme workload pressures and focus on the Covid-19 vaccination programme," said professor Martin Marshall, chair of the RCGP.

Dr Farah Jameel, of the British Medical Association (BMA) told the BBC News that the timeline for GPDPR programme needed a "hard reset".

"NHS Digital and the government must postpone the date of the first 'extraction' of data - scheduled for 1 July - until such time as the public are able to make a fully informed decision about what happens to their data," she said.

Individual doctors and other health professionals have also been voicing their concern on social media that sensitive health data could find its way into private sector organisations.

Last week, campaigners from five groups demanded the Department of Health and Social Care (DHSC) to extend its opt-out deadline of June 23rd or face being sued.

On Monday, the Labour Party also called for a public consultation to alleviate concerns among medical professionals about GPDPR.

Alex Norris, shadow minister for primary care, has written a letter to Sarah Wilkinson, the chief of NHS Digital, stating that he supports the principle of sharing patients' data with other agencies to improve health care, but the rollout "must be built on trust".

"I echo concerns from across the health sector that the lack of transparency on which organisations can access this personal data is deeply concerning," Mr Norris said in his letter, according to Sky News.

Mr Norris said that there were serious questions that NHS Digital needed to answer, including which organisations would access the data and for what purposes, what safeguards were put in place to protect patient data, and how patients who chose to opt out of the programme could be allowed to block sharing of future data and removing data from the collection.

"Patients need to be made fully aware of which of their data is available for access and by whom, and so I have written to NHS Digital asking them to pause their upcoming GP data collection until these questions are resolved," he added.

The letter was copied to Health Secretary Matt Hancock.

NHS Digital said in a statement that it was in talks with the BMA and RCGP on the issue.

"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," it noted.

The organisation also said that it was "committed to being transparent with patients and the public about the collection and use of data."