Understanding Patient Data: Using Patient Data for Planning and Population Health, Views from the UK General Public 2024

In recent years, public opinion regarding the utilisation of patient data within the NHS has become a salient topic, particularly following the suspension of key health data initiatives due to insufficient public support. While various studies have explored public perceptions of patient data usage in the NHS, there was a notable gap in research focusing specifically on the use of patient data for planning and population health. Understanding Patient Data, an independent initiative hosted by the NHS Confederation, commissioned us to complete a piece of research to understand public awareness, understanding, and support for the use of patient data for planning and population health purposes.

We employed a mixed methods approach to collect the views of the public. This involved designing and conducting a quantitative online survey with a nationally representative sample of the population. Before the survey was distributed, cognitive tests were conducted with members of the public to ensure the questions were clear, accessible, and effective. Additionally, we engaged the public via a series of online workshops.

Our research enabled Understanding Patient Data to address a significant knowledge gap, shedding light on how the public perceives the use of patient data for planning and population health purposes within the NHS. Building on these insights, we formulated a series of recommendations, which Understanding Patient Data were able to draw on to inform their communications, shape public policy discussion, and drive further research. Our final report is available here.