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NHS Data Sharing Plans Delayed Again as Millions of Patients Opt-out

Ross Kelly

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GPDPR
The scheme was met with a significant backlash from privacy campaigners and healthcare practitioners.

Controversial NHS plans to use patient data have been met with fresh setbacks amid a growing number of patients choosing to opt-out.

Reports from The Observer suggest that NHS digital plans to further delay the implementation of the General Practice Data for Planning and Research (GPDPR) scheme.

According to the publication, more than 107,000 people opted out of the GPDPR scheme in May following a high-profile campaign to stop the data sharing plans. In June, this number skyrocketed to nearly 1.3 million people.

Announced by NHS Digital earlier this year, the scheme would see GP data for English patients shared with organisations for healthcare research purposes.

Under the plans, patient data would be pooled within a single database. This included information pertaining to a persons’ gender, ethnicity and other information based on GP records.

While NHS Digital insisted that data would not include personally identifiable information, the announcement was met with a backlash from leading healthcare figures and privacy campaigners amid fears that data could be used to lead back to patients.

An initial six-week deadline to opt-out of the GPDPR scheme was granted upon the announcement. However, the deadline period was criticised for being too short.

At the time, the Royal College of General Practitioners urged the government to delay the plans and claimed that many GPs were “too busy” to alert patients to the changes.

The College argued that a delay would enable healthcare practitioners to tell patients about the data transfer and allow the public to make informed decisions about the use of their data.

Under-Secretary for Health and Social Care, Jo Churchill, confirmed the delay in the House of Commons in June, setting a preliminary date in September for the eventual move.

In mid-July, NHS Digital confirmed it was cancelling the September deadline, and the programme is currently on hold with “no new date for implementation”.


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NHS Digital said it will soon embark on a “listening exercise” to consult with practitioners and patients. A public information campaign will be launched off the back of this consultation process.

The organisation has also made a number of concessions to alleviate concerns from privacy campaigners and patients across England. Moving forward, any new programme will enable patients to opt-out of the scheme “at any stage”.

Patients who choose to opt-out will also have their data deleted even if it has already been uploaded to the database.

A spokesperson for NHS Digital told The Observer: “We take our responsibility to safeguard data very seriously, and it will only ever be used by organisations that have a legal basis and legitimate need to use it for the benefit of health and care planning and research.

“We have listened to feedback on proposals and will continue working with patients, clinicians, researchers and charities to inform further safeguards, reduce the bureaucratic burden on GPs and step-up communications for GPs and the public ahead of implementing the programme.”

Ross Kelly

Staff Writer

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