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Background and NAPP’s response to NHS Digital’s General Practice Data for Planning and Research

On 12 May 2021, NHS Digital launched its “Improved Collection of GP Data” programme by issuing a data Provision Notice to GPs. The purpose of this new programme is to use primary care data to better plan healthcare services and provide insights into medical research.

N.A.P.P. is supportive of these guiding principles, which are crucial to improving the patient experience and ultimately health and treatments. However, the lack of communication about the programme, which deprives patients of their right to an understanding about how their medical records will be used, has been cause for major concern. Without this knowledge patients are unable to make timely and informed decisions regarding the use and storage of their data, and their right to opt-out.

In a letter to The Times, N.A.P.P.’s Patron, Professor Sir Denis Pereira Gray and President, Dr Patricia Wilkie said: “The fundamental principle is patient consent. Emerging forms of artificial intelligence are making it easier to re-identify people. There are now serious questions about whether British GPs will be able to keep confidences in future and the trust of their patients. This proposal is of the highest importance to patients whose information it is. Patient representatives have not been consulted and patients are being given only until 23 June to opt-out when most of them know nothing about this proposal.”

Such pressure from N.A.P.P., as well as the British Medical Association, the Royal College of GPs and other bodies has resulted in a delay to the rollout, from 1 July to 1 September.

In response, Health Minister Jo Churchill addressed the House of Commons saying: “Patients own their own data”. She added that the government was “absolutely determined to take people with us on this journey” and that ministers would use the extra time to “talk to doctors, patients and charities to strengthen the plan… and ensure data is accessed securely”.

N.A.P.P. believes that there is a critical role for PPGs to play in creating public awareness about these changes to patient data. This covers both educating and informing patients about the new GP data programme, so patients can take an informed, empowered choice.

N.A.P.P. will continue working closely with the responsible bodies to ensure the patient perspective remains at the forefront of their agenda. In doing so we are pushing for the roll-out of a public awareness campaign which clearly communicates the benefits, and any associated risks, of the programme. As a result, we would like to see all patients empowered to make an informed and educated decision about the use of their data well before 1 September 2021.