To ask the Secretary of State for Health and Social Care, what discussions he has had with (a) patients and (b) groups that represent patients on the proposed NHS Federated Data Platform; and whether his Department has identified any concerns relating to the Platform.
This answer is the replacement for a previous holding answer.
Answered on
18 May 2023
Public facing information was published ahead of the procurement contract notice launch and will continue to be published throughout the lifecycle of the programme. This information was developed with public voice advocacy groups which included medConfidential, useMYdata and The Patients Association.
NHS England continue to engage members of the public directly on complex data topics, such as the public’s expectations of transparency and communications for future stages of the Federated Data Platform through various methods, including through focus groups and public dialogues. Engagement has identified concerns about who will be awarded the contract, who will have access to the data, and how it might be used.
NHS England are working to develop a public facing campaign to run in 2023 to support greater understanding of the power and impact of the use of health data to transform services, improve care and save lives, and to address these concerns.