Use of nationally collected GP practice data will be restricted to researchers working under very specific conditions, it was announced yesterday.

NHS officials abandoned attempts to resume the controversial upload of data on 1 September while three conditions were laid down by the government. The changes were welcomed by GP leaders. A national upload was abandoned last month after growing complaints about the lack of public knowledge of the plan. Developers had hoped it could proceed rapidly following significant use of practice data to help trace the pandemic and the impact of treatments.

Under the new proposals, agreed by NHS Digital, patients must have the ability to opt out at any point – with a guarantee that their data is deleted if they opt out of research programmes. There will also be new publicity campaigns to explain the programme. The third proposal is for a “trust research environment” which will be available to approached researchers. Researchers will not be able to download data from the environment.

Simon Bolton, chief executive of NHS Digital, said: “Patient data is vital to healthcare planning and research. It is being used to develop treatments for cancer, diabetes, long COVID and heart disease, and to plan how NHS services recover from COVID-19. This research and planning is only as good as the data it is based upon. We know we need to take people with us on this mission and this decision demonstrates our absolute commitment to do just that.We will continue to work with patients, clinicians, researchers and charities to further improve the programme with patient choice, privacy, security and transparency at its heart.”

Dr Farah Jameel, from the British Medical Association’s GP committee, said: “We are relieved that there will now be time to ensure the final programme is comprehensive, considered and well-communicated. The GP data programme is a monumental step change in the way confidential health care data will be used so it’s vital that government and the programme designers bring the profession and public with them so that they can be confident about the plans. We look forward to working with NHSD to ensure that the programme, agreed improvements and particularly the public engagement campaign, strikes the right tone, engenders public and the profession’s confidence, meets the test of transparency and that the views of the medical profession are represented.”

A joint statement from the BMA and the Royal College of GPs added: “It is positive to see that key points have been acknowledged and addressed in the latest plans. We will continue to work closely with the government, NHSX and NHS Digital to ensure that these plans are delivered appropriately and to represent the views of our members as the programme develops.”