Patients have been urged by doctors and charities not to opt out of a new scheme to share their GP data with third parties because it can save lives, with the call coming after the launch was delayed for two months.
The NHS Digital system, which was due to start collecting data on July 1, was pushed back after the Government faced criticism that the plans had been rushed and lacked transparency.
Doctors, researchers and charities have hit back at these criticisms, with some claiming that a "small but vocal minority of campaigners is behind the circulation of misinformation".
A joint statement from the Medical and Research Community, which includes representatives from the Universities of Oxford and Cambridge, the Wellcome Trust and Cancer Research UK, said they supported NHS Digital’s plans.
"We believe that the trustworthy use of patient data for research that is in the public interest will enable better care, better treatments and better outcomes for the citizens of the UK," the statement, released on Thursday, said.
The organisations welcomed the decision to allow more time to "build transparency, clear communication and ongoing engagement" around the scheme, but urged the public not to use the delay to opt out.
Previously, patients had until June 23 to opt out of their medical data being shared into the new system. However, they can still opt out after this date, meaning any future data would not be collected.
"We hope that with better information on both the benefits and the safeguards of this improved approach, people will choose not to opt out," the statement said. "It is vital that healthcare planning and research includes and represents all people so that we find treatments, improve care, and deliver positive outcomes for everyone."
‘GP data critical to understanding how to treat patients better’
Prof Martin Landray of the University of Oxford, co-lead of the Reovery trial, which used patient hospital data to discover that dexamethasone was effective at significantly reducing Covid deaths, was one of the signatories.
Estimates suggest the discovery saved more than 22,000 lives in the UK and one million worldwide, and accessing GP data is "critical" to understanding how to treat patients better, Prof Landray said.
"It’s so important that we can combine, not only the hospital data but the GP data in order to understand" if dexamethasone has long term benefits, he added.
"We have diseases like osteoporosis, chronic respiratory conditions, arthritis, mental health, dementia, heart failures… in all of those cases we need better treatments," he said. "And in all of those cases the GP data would make the quality of the information we have about which drugs work, and which don’t, and in whom they work… substantially better.
"GP data is critical to understanding how to treat patients better, not only in Covid but right away across all diseases."
The data will only be used for health and social care planning and research purposes, NHS Digital has said. All requests for access to the data from third parties, which include researchers and universities, will be subject to independent oversight with audits.
Campaigners have criticised the plans, claiming they could damage patient-doctor relationships and lacked transparency. However, experts wared delays to the programme could "cost lives".
Prof Cathie Sudlow, the director of the BHF Data Science Centre, a partnership between Health Data Research UK and the British Heart Foundation, said: "The role of data in supporting healthcare planning and vital research is essential. Data saves lives, barriers and delays will cost lives.
"The new improved data collection system will allow better planning and monitoring of healthcare for all patients in England, and more robust, reliable, and rapid research to benefit the public’s health. A small, but vocal, minority of campaigners is behind the circulation of misinformation about this new and improved primary care data collection."
Matt Hancock, the Health Secretary, has drafted in Sir Ian Diamond from the Office for National Statistics (ONS) and Helen Stokes-Lampard, who chairs the Academy of Medical Royal Colleges, to advise on how the programme can be rolled out successfully.
In an article for the Health Service Journal, Simon Bolton, NHS Digital’s chief executive, said Sir Ian would advise on "how we can ensure we follow best practice in preserving privacy" by drawing on the work of the ONS.