Pause plans for NHS data sharing scheme, Labour urges

6 June 2021, 22:30

Plans to allow an NHS system to extract patient data from doctors' surgeries in England should be paused to address concerns around privacy, Labour has said.

In a letter to NHS Digital and copied to Health Secretary Matt Hancock, a junior shadow minister has called for a public consultation and information campaign to allay fears of the public and medical professionals.

The scheme will collect information on people's treatments, referrals and appointments over the past 10 years, alongside other data from medical records held on GPs' systems.

The collected data is coded by NHS Digital to protect patient identities.

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But the British Medical Association (BMA) and Royal College of General Practitioners (RCGP) have voiced concerns that the move is being implemented too fast, without sufficient patient consultation, and have called for a delay.

Alex Norris, shadow minister for primary care, said: "I echo concerns from across the health sector that the lack of transparency on which organisations can access this personal data is deeply concerning.

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"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."

Writing to Sarah Wilkinson, chief executive of NHS Digital, Mr Norris said he "fully supported the principle of improved data sharing" as a life-saving and healthcare improving measure but that the rollout "must be built on trust".

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The Labour MP said patients needed answers on which aspects of their data will be made available, which third-party organisations will have access to any sensitive health information, what limits and safeguards there will be on use of patient data and what mechanisms are in place to opt out.

"Given the confusion and lack of transparency around this process, I believe that it is vital to delay the introduction of the General Practice Data for Planning and Research data collection until a public consultation and information campaign has taken place," Mr Norris said in his letter to the outgoing chief.

Under the current timescales, the BMA has said patients only have until June 23 to decline having their coded health data given to NHS Digital.

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Daily "extracts" of the coded data from practice systems to NHS Digital will then begin from July 1, it said.

A Government spokeswoman 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."