Patient and Public Involvement in Health Data: A New UK-Wide Mapping Project

We are delighted to announce that HQIP has been commissioned by Understanding Patient Data to lead a new national project exploring how patients and the public are involved in decisions about health and care data.

Health data plays an increasingly important role in research, service planning, and quality improvement. This project will help ensure that these decisions are informed by meaningful patient engagement, strengthening public trust and improving how data is used for the benefit of patients and communities.

The project will build a whole-system understanding of who is involved in health data decision-making, how influence happens, what is working well, and where further support is needed. By mapping current practice and identifying opportunities for improvement, it aims to strengthen inclusive, transparent, and sustainable approaches to public involvement.

Clare Fountain, Associate Director at HQIP, said: “There is significant patient and public engagement in health data across the UK, but we don’t yet have the full picture. This project will support whole-system understanding of who is doing what, what is working well, and where the challenges lie.”

By combining Understanding Patient Data’s focus on transparency and public trust with HQIP’s expertise in quality improvement and data governance, the project will help ensure that patient and public insight genuinely shapes how health data is used.

Getting involved

The project will run over the coming months and will involve interviews, focus groups, and a UK-wide survey with organisations, professionals, and public contributors working in health data. Findings will inform practical recommendations and resources to support stronger, more consistent involvement across the system.

For updates on this project, and how to get involved, subscribe to our mailing list. You can also follow HQIP on LinkedIn and X: @HQIP.

If you work with health data, policy, or public involvement and would like to contribute, we would be pleased to hear from you. Please contact: PPIEinhealthdata@hqip.org.uk.