An NHS system set to extract patient data from doctors’ surgeries in England should be paused from doing so until people are told what information will be made available, Labour says.
The opposition is calling for a public consultation and information campaign to allay privacy fears among medical professionals.
The scheme is expected to collect information on people’s treatments, referrals and appointments over the past 10 years, alongside other data from medical records held on GPs’ systems.
In order to protect patient identities, the collected data is coded by NHS Digital.
This form shows how a patient can opt out
However, there are concerns from the British Medical Association (BMA) and Royal College of General Practitioners (RCGP) that the plans are being brought in too quickly, without enough patient consultation – and they want a delay.
Under the current timeframe, the BMA says patients have until 23 June to decline having their coded health data given to NHS Digital.
Daily “extracts” of the coded data from practice systems to NHS Digital will then begin from 1 July, it said.
Alex Norris, shadow minister for primary care, called for the public consultation and information campaign in a letter to Sarah Wilkinson, chief executive of NHS Digital, and copied to Health Secretary Matt Hancock.
The Labour MP said he “fully supported the principle of improved data sharing” as a life-saving and health care improving measure, but that the rollout “must be built on trust”.
He cautioned: “I echo concerns from across the health sector that the lack of transparency on which organisations can access this personal data is deeply concerning.
“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.”
Some patients have received text messages giving them the opportunity to opt out
He said patients need answers on which parts 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.
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.”