Response to ‘Developing a data pact’ a report on the public engagement undertaken by the Patients Association
Published 27 September 2023
The data pact is a strand of work set out in first chapter of the Data Saves Lives strategy. The purpose of the pact is to set out clearly, in simple terms and in one place, how the NHS and social care uses health and care data and what the public has the right to expect.
It aims to provide clarity and certainty about what does – and does not – happen to health and care data and give the public confidence that the health and care system is a trustworthy custodian of data.
Digital Policy Unit response
The pact is a key commitment that forms part of our overall mission to improve levels public trust and transparency in the health and care system’s use of data. DHSC and NHS England sought views from the National Data Advisory Group early in the development phase - a group of external stakeholders, convened to provide scrutiny and challenge of the ongoing delivery of the Data Saves Lives strategy. The group advised that prior to drafting any pact, initial engagement should be undertaken directly with the public, consulting on the concept and scope.
In response to this advice, and following an open-procurement process, we commissioned the Patients Association to deliver a set of focus groups to gather initial ideas and feedback from the public on the ‘data pact’. The overall report on the sessions has now been published by the Patients Association.
We would like to express our gratitude to all participants for engaging on the key issues around the development of the data pact. Participants contributed throughout with enthusiasm and energy, we are grateful to them for openly sharing their experiences and thoughts on how we should go about developing a data pact. The views expressed across the three focus groups will form the basis for the development of the data pact.
We would also like to thank the Patients Association for providing a platform for a representative sample of the public to express their views on this important topic.
The report published by the Patients Association sets out three key themes spanning the project, and recommendations, which we will take on board around:
- Contextual factors and what they mean for how and when we approach development
- Scope, development and content of a pact
- Approach to ongoing communication
Our intention is now to:
- work up a first draft of a possible pact, informed by the public’s feedback that is captured in this report. We will work with the National Data Advisory Group and other stakeholders as we do this;
- publish this draft, so that more stakeholders and members of the public have a chance to see and shape our early thinking; and then
- take a refined draft to upcoming large-scale public engagement events where a representative sample of the public will have the opportunity to deliberate and co-design the pact to reflect what they would expect to see