The implementation date for General Practice Data for Planning and Research (GPDPR) service has been moved to 1 September 2021.
On May 12, NHS Digital issued a Data Provision Notice to GPs to enable GPDPR to begin from 1 July 2021 with the aim of giving planners and researchers faster access to pseudonymised patient information.
Therefore, NHS Digital has said that to ensure that more time is allocated to speak with patients, doctors, health charities and others to strengthen the plan even further, the collection of GP data for planning and research in England would be deferred from 1 July to 1 September 2021.
Simon Bolton, interim chief executive of NHS Digital, said: “Data saves lives and has huge potential to rapidly improve care and outcomes, as the response to the Covid-19 pandemic has shown. The vaccine rollout 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.”
In a press release, NHS Digital said it is “committed to being transparent with patients and the public about the collection and use of data”.
“Under the system entire GP records will not be collected,” it adds.
“All the data which is collected is protected – or pseudonymised – before it leaves the GP surgery to ensure patients cannot be directly identified from the data while still enabling it to be safely linked to other records.
“Data can only be accessed by organisations which will legitimately use the data for healthcare planning and research purposes, and they will only get the specific data that is required. All requests are subject to independent oversight and scrutiny, and audits are conducted to ensure it is being used for the purpose it was requested for.”
If a patient does not want identifiable data to be shared outside their GP practice, except for their own care, they can choose to opt-out by requesting that their GP practice record is not shared, known as a Type 1 opt out, or by registering their opt-out through the National Data Opt Out service on nhs.uk.
In a tweet, the Royal College of GPs (RCGP) said it was “pleased” that the implementation date had been delayed.
The RCGP and the British Medial Association (BMA) issued a joint letter last week to express their concerns and “about the lack of communication with the public”.
Following the news that the service had been paused, BMA GP committee executive team member and IT lead, Dr Farah Jameel said: “Today’s announcement is an important win for patients, family doctors and the BMA. Along with the RCGP, we made it abundantly clear to both the government and NHS Digital that this programme needed to be delayed to allow for a proper in-depth public information campaign to give the public a chance to make an informed decision about whether they want their data collected as part of the new GP data extraction programme.
“We knew there was insufficient time until the first extraction – originally planned for the 1st July – to allow for the public to have a proper understanding of what the programme was intended for and to give enough time to make fully informed choices on whether they should opt-out or not.
“We know from our members that many family doctors feel that all their patients may not yet know what’s changing, and many practices do not believe that they themselves have been given the right level of information nor adequate time to comprehensively understand the programme, its merits and the safeguards it will operate within. It’s clear that previous communications from NHS Digital on this programme has, frankly, been either inadequate or non-existent.
“While the BMA understands that data sharing plays a key role in planning and research as well as developing treatments, we also know that the crux of the GP-patient relationship relies on trust, transparency and honesty, and therefore allowing the public to make fully informed decisions is paramount.
“What’s important now is that the government takes full responsibility for ensuring that there is honest dialogue and robust public engagement. GPs were never, and should not be, expected to take responsibility for communicating the details of this programme to patients, so we would expect to see the Government use this extension to adequately communicate the programme details to doctors and the public. Patients across England must be afforded the ability to make an informed choice in this matter, with decisions based on the correct facts and information.”
The announcement of the changes did lead to threats of legal action, as Foxglove – a team of lawyers, technology experts and community activists – sent a pre-action letter on behalf of several organisations and Conservative MP David Davis.
Foxglove director, Cori Crider, welcomed the decision to move the implementation date to September adding that “now the government needs to meaningfully involve people and answer key questions”.