NHS plan to share patients’ data delayed after privacy backlash

A plan to share millions of NHS patients’ data with third parties has been delayed after the Government faced a major backlash over privacy concerns.

Information on people’s treatments, referrals and appointments, alongside other data from medical records held on GPs’ systems, are to be collected by NHS Digital.

The data will only be used for health and social care planning and research purposes, NHS Digital has said. But campaigners criticised the plan, which was due to start extracting data from July 1, claiming it could damage patient-doctor relationships and lacked transparency.

Last week, NHS Digital and the Department of Health and Social Care (DHSC) faced the threat of a legal challenge to drop the deadline for patients to opt out of the scheme, which was originally set for June 23.

On Friday, the Government insisted GPs were expected to be ready to implement the system from next month.

Health minister Lord Bethell has now said the implementation date will be pushed back two months to ensure "that it is as effective as possible".

He told peers: "Data saves lives. We have seen that in the pandemic and it’s one of the lessons of the vaccine rollout."

He said the GP data programme "will strengthen the system", but added: "That’s why we are taking some time to make sure that it is as effective as possible so the implementation date will now be September 1. We will use this time to talk to patients, doctors and to others to strengthen the plan, to build a trusted research environment and to ensure the data is accessed securely."

Jo Churchill said the plans would still go ahead this year

Credit:  Richard Townshend

Health minister Jo Churchill insisted the data programme will still go ahead this year.

Elizabeth Denham, the Information Commissioner, said she welcomed the delay, adding that "considerable confusion regarding the scope and nature" of the programme remained.

"The appropriate use of health data is an important part of health and care research and planning in England, and better sharing of health data could offer substantial benefits," she said.

"However, it is clear that there remains considerable confusion regarding the scope and nature of the GPDPR [General Practice Data for Planning and Research], among both healthcare practitioners and the general public. This includes how data protection rights can be exercised in practice."

Doctors, MPs and privacy groups have criticised the plans, arguing that they have not been communicated properly to the public.

A group of doctors’ surgeries in Tower Hamlets has already agreed to withhold the data when collection begins, according to The Guardian. Dr Ameen Kamlana, one of the GPs, told the newspaper there had been "no public information campaign to inform the public about the plans, and in order to allow them to decide for themselves whether they are happy about it".

The Royal College of GPs has said it supports "improved and more secure sharing of data for healthcare planning and research purposes" but that a "comprehensive campaign" led by NHS Digital was needed to communicate the system to the public.

Dr Farah Jameel, an executive team member of the British Medical Association’s GP Committee, said data-sharing plays a key role but added: "It’s clear that previous communication from NHS Digital on this programme has frankly been either inadequate or non-existent."

A pre-action letter sent to DHSC and NHS Digital from a coalition of five organisations, joined by the MP David Davis, argued that "rushing such a major change through with no transparency or debate violates patient trust, and doing so without seeking patient consent is unlawful".

The letter called for the June 23 deadline to be scrapped or they would seek an injunction. The group has so far fundraised more than £25,000 to launch legal action.

Welcoming the delay, Mr Davis said: "The Government is absolutely right to postpone the GP data programme. Any such programme must be subject to rigorous scrutiny and parliamentary approval. That is now what must happen."

NHS Digital said entire GP records will not be collected and it will replace a 10-year-old system which "needs to be replaced". All the data collected will be pseudonymised before it leaves the GP surgery to ensure patients cannot be directly identified from it.

Simon Bolton, the NHS Digital CEO, 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. We intend to use the next two months to speak with patients, doctors, health charities and others to strengthen the plan even further."

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