NHS Digital has announced a two month delay to the GP Data for Planning and Research (GPDPR) programme, a primary care data collection service originally set to come into place on 1 July 2021.
On 12 May, NHS Digital announced the data collection service, to make near-real-time information and data available with a purpose to support healthcare planning and medical research.
Previously, patients in England had until 23 June to opt-out of their coded health data, which is held in GP systems, being used, with daily ‘extracts’ of the coded data from practice systems to NHS Digital to begin from 1 July.
However, professional organisations such as the Royal College of GPs and the British Medical Association recently called on a delay to the start of the programme to allow for more time for communications to professionals and the public.
On Friday 4 June, the RCGP, said: “We have called for the delay in order to allow time for a proper public information campaign and for patients to make informed decisions about the use of their data, including the right to opt out.”
“The College supports the principle of improved and more secure sharing of data for legitimate healthcare planning and research purposes, but it is critical that appropriate safeguards are in place to guard against any inappropriate uses of this data. Most importantly, any sharing of data must be transparent and maintain public trust in how general practice and the NHS more widely uses their information.”
NHS Digital has now moved the start date of the programme, now to go ahead on 1 September 2021.
Simon Bolton, CEO, NHS Digital, commented: “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 the announcement, NHS Digital said the current system in place is “over 10 years old” and “need[s] to be replaced”.
NHS Digital said: “Under the system entire GP records will not be collected. 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.”
“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.”