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NHS Digital delays data collection plans until September

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

Citing a need for more time to inform people about the impact of and need for the proposed General Practice Data for Planning and Research (GPDPR) data-sharing programme, NHS Digital has announced it will defer the collection of GP data until 1 September 2021.

The delay to the controversial and highly criticised programme was announced earlier in the Commons by Jo Churchill, minister for public health, primary care and prevention.

“Patient data is of course owned by the patient and we are absolutely determined to take people with us on this journey,” said Churchill. “We have therefore decided we will proceed with the important programme but we will take some extra time, as we have conversed with stakeholders over the past couple of days. The implementation date will now be on the first of September, and we will use this time to talk to patients, doctors, health charities and others to strengthen the plan, build a trusted research environment and ensure that data is accessed securely.”

NHS Digital said that it was clear that data saved lives, and that this had been seen first hand in the past few months, as the success of the UK’s Covid-19 vaccine roll-out could not have been achieved without using it to ensure the whole population receives a vaccine, with the elderly and clinically vulnerable prioritised.

It said making better use of the data resources held by GPs would ultimately benefit millions, improving care and health standards, and helping better understand and treat some of the most serious illnesses such as heart disease, diabetes and cancer.

“Data saves lives and has huge potential to rapidly improve care and outcomes, as the response to the Covid-19 pandemic has shown,” said NHS Digital CEO Simon Bolton. “The vaccine roll-out could not have been delivered without effective use of data to ensure it reached the whole population.

“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.”

Read more about GPDPR

NHS Digital reiterated that the GPDPR programme would replace a system that was now 10 years-old and unfit for purpose, and that the scheme had been developed alongside patients, doctors, and data, privacy, security and ethics experts.

It also said that it had been committed, throughout the process, to being transparent with patients and the public about the collection and use of data – a point that many of the scheme’s critics, who include practicing doctors, lawyers, and even the British Medical Association (BMA), take issue with.

It restated that all data scraped will be protected and pseudonymised to ensure no patient can be directly identified, and will only be accessible to organisations with a legitimate, legal use for it for planning and research, subject to independent oversight, scrutiny, and data audits.

“But it is important patients who would rather opt out of sharing their data for planning and research purposes still have the right to do so through the National Data Opt Out and this will allow them more time to make this decision,” said NHS Digital.

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