NHS Digital delays data collection plans until September

by Joseph K. Clark

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 program, NHS Digital has announced it will defer the collection of GP data until 1 September 2021. The delay to the controversial and highly criticized program 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 determined to take people with us on this journey,” said Churchill. “We have decided to proceed with the important program, but we will take some extra time as we have conversed with stakeholders over the past few days. The implementation date will now be on 1 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 firsthand 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 prioritized. 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 severe illnesses, such as heart disease, diabetes, and cancer.

data collection

“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 the effective use of data to ensure it reached the whole population. “We are 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 further.”

NHS Digital reiterated that the GPDPR program would replace a system that was now ten years old and unfit for purpose. The scheme was developed alongside patients, doctors, 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 pseudonymized to ensure no patient can be directly identified. It will only be accessible to organizations with legitimate, legal use 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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