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Public engagement on next steps for patient data


Gary Flood Correspondent

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Citizens will be invited to help shape how the NHS uses their health data in a series of national outreach programmes running from January to March 2025.

NHS England hopes to gather public views on digital and data transformation in the NHS and is setting aside £2m to fund the exercise. The public will be able to discuss and find out more about major programmes already outlined in the government’s Data Saves Lives strategy to help provide patients with a simpler, more meaningful choice about their data. It will also allow the health and care system to meet its commitments in the Data Strategy to develop products with the involvement of the public.

Among the topics to be discussed will be the already known plan asking for views on the Federated Data Platform, a projected way to join up existing NHS data to help speed up diagnosis, reduce waiting times and hospital stays. However, ambitions seem to have grown since that was announced in August, with the organisation now hoping for giving the public “a genuine means of informing and shaping policy around the use of their health data”. The programme also intends to build on the ‘Powered by Data’ campaign launched by NHS England in June to showcase where health data has delivered significant benefits for patients, and society more broadly.

NHS England says that a basis of trust has been established by the success of the fight against COVID.

“Better use of data brings huge benefits for patients, ensuring more joined-up care and better use of NHS resources, and leading to faster cancer diagnosis, shorter wait times for elective operations and reduced stays in hospital,” said Dr Vin Diwakar, national director of transformation at NHS England.

“Public support is integral to how we better use data to improve care, and the best way to do this is through effective and meaningful engagement. Over the course of next year, we will continue to highlight how data is used across the health and care system, and it is vital that we involve the public in shaping future data use and how it can save lives.”

The Patients Association said it supports a transparent and genuine public engagement programme on how patient data are used, and it encourages all patients to get involved, while national data guardian Dr Nicola Byrne added:

“It is vital to listen and engage with the public when considering policy changes or technical improvements that will impact on how health and care data is used... I look forward to being able to further advise and support this public dialogue work.”

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