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NHS data-sharing plan affects more than 1.7 million patients in Black Country and Staffordshire

More than 1.7 million patients across the region could be affected by controversial plans to share GP surgery data.

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Information on patients’ treatments, referrals and appointments over the past 10 years will be extracted from GP surgeries by an NHS system unless people opt out before September.

The programme, GP Data for Planning and Research, was due to start in July, but has been pushed back to September amid concerns around privacy.

And the latest figures show the plans could affect more than 1.7 million patients across the Black Country and Staffordshire.

NHS Digital figures show there were 1,493,091 patients on GP registers in the NHS Black Country and West Birmingham CCG area as of June 1, 151,016 patients on GP registers in the NHS Stafford and Surrounds CCG area and 135,648 patients on GP registers in the Cannock Chase CCG area.

They will now have until August 31 to opt out of sharing their personal information.

The programme would put the medical histories of 61 million patients across England into a new database.

The launch was delayed to September 1 following complaints from privacy campaigners and doctors that people did not have enough time to understand what was happening.

Information will be accessed by organisations “which will legitimately use the data for healthcare planning and research purposes”, and all requests will be subject to independent oversight and scrutiny, NHS Digital said.

It added that patients can opt out of sharing their data at any time, though any opt-out will not be applied retrospectively.

Anyone wishing to opt out of GPDPR entirely should therefore do so before September 1.

But a local health body said people are confused and called for transparency over the plan.

Tracey Cresswell, manager of Healthwatch Wolverhampton, said: "The first I saw was on a programme last week, we haven't heard from the NHS.

"We've been engaging with Healthwatch England and they have contacted the Government and they're saying this needs to be put on hold, there needs to be more transparency about what is changing and when.

"There are mixed feelings, some people don't know about it, what is their choice, when it this delay until. There are a lot of concerns from patients.

"We haven't heard about it from the NHS and on all the websites it gives you different information.

"We need transparency on this. People are seeing it in the media and they are confused.

"We only heard something from Healthwatch England on Thursday so we're going to get something on our social media so people can get in touch with us if they have concerns.

“A lot of patients are trying to get through to their GP and fill out an opt-out form and they’re struggling to get through, and some of the GP receptionists aren’t aware of it. There is confusion across the system.”

Aileen Farrer, manager of Healthwatch Walsall, added: "The public need to understand how they can opt out if they need to.

"The delay is good, we can work to get the information out."

Simon Bolton, chief executive of NHS Digital, said: "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.”

The data will be pseudonymised to ensure patients cannot be directly identified.

But campaigners say pseudonymous is different from anonymous, meaning peoples’ identities will be disguised but could later be re-identified.

The Royal College of GPs welcomed the delay but said safeguards must be in place to ensure data is not used inappropriately.

Professor Martin Marshall, chairman of the Royal College of GPs, said: “It is essential that this time is used to properly communicate with the public and with clinicians so that patients and GPs have trust in the programme.

“Surveys show that most patients are happy for their data to be used for legitimate planning and research purposes, but this must be built around trust.”

Cori Crider, director of digital privacy group Foxglove, said: “The Government must make sure every single patient in England is meaningfully informed about what is happening to their data.

“How will the Government guarantee that for people who aren’t online, like the 67 per cent percent of older people not digitally connected?

“This data belongs to patients, and they fund the NHS, so it should be their choice.”

NHS Digital figures show the number of patients registered with GPs in England increased over the last year, from 60.4 million in June 2020 to 60.9 million this month.