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Over a million opt out of NHS data-sharing

Failure to communicate benefits of data-sharing proposals and privacy concerns are prompting large numbers of people to opt out of a proposed NHS Digital scheme

A public backlash against NHS Digital’s General Practice Data for Planning and Research (GPDPR) data-sharing plan saw more than a million people exercise their right to opt out of the scheme in June, with many more likely to follow as awareness of the proposals spreads.

According to government figures obtained by The Observer, a total of 107,249 people opted out during May, and this increased to 1,275,153 in June after the programme started to attract attention in the mainstream media.

NHS Digital has received substantial criticism from technology experts, privacy campaigners, MPs and doctors over its failure to publicise and explain the benefits of the GPDPR programme, which was officially launched in May.

The data it proposes to gather from GPs will be used for resource and care planning purposes, research into some of the UK’s biggest killers such as cancer and heart disease, and Covid-19.

However, the message that has cut through to the general public has not been one of collective effort to improve healthcare for everyone, but rather one of the NHS scraping people’s data without their consent and abusing it by sharing it with private sector organisations.

In the light of this, the GPDPR scheme was put on hold pending revisions and the introduction of tighter safeguards in July, with no firm date for its full introduction.

“There has understandably been a huge public backlash against NHS plans to make patient data available to private companies,” said Kingsley Hayes, head of data breach at law firm Keller Lenkner UK.

“Although this project is on hold, we are yet to see whether this will change the NHS’s approach to data sharing and research projects.

“The NHS already has a troubled history with regard to data transparency and public consent despite investigations by the likes of the ICO [Information Commissioner’s Office].

“It would appear that the general public are now starting to understand more about the risks of such data sharing and no doubt the opt-in rates will continue a downward trend until such time as there is full and detailed transparency.”

According to The Observer, NHS Digital will launch a “listening exercise” and wider consultation over the GPDPR proposals in the very near future.

The organisation told the newspaper that the quality of the medical research and planning it would be able to conduct thanks to the data-sharing programme would only be as beneficial as the data allowed, so it was important that people make an informed decision about whether or not to opt out.

An NHS Digital spokesperson said: “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.”

Read more about the GPDPR controversy

12 May 2021: New system designed ‘with interests of patients at its heart’ will provide near-real-time primary care data to support improvements in healthcare and help research.

28 May: Security and data privacy experts warn NHS Digital that its data collection plans could increase risk and cause a public backlash.

4 June: The Chartered Institute for IT has warned that millions of people are not being properly informed of NHS Digital plans to harvest their data.

7 June: Privacy coalition aims to force NHS Digital to push back its plans to scrape medical information on millions of patients into a central database.

8 June: The UK’s national data guardian says it is important that the public has clarity on how their confidential medical information will be used and kept secure under NHS data-sharing plans.

8 June: NHS Digital has postponed its proposed collection of GP data for two months to allow more time for the public to understand the process and opt out if wanted.

16 June: Matt Hancock tells CogX 2021 conference in London that huge opportunities lie ahead in the application of analytics to pseudonymised patient data.

20 July: The proposed collection of patient data held by GPs will now only commence when three key criteria have been fulfilled, says NHS Digital.

28 July: Around half of adults in England – approximately 20 million people – remain unaware of the scope of the NHS GPDPR programme, prompting calls for a public education campaign.

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