Survey now open: Inform our system analysis of Patient and Public Involvement and Engagement (PPIE) in Health Data

17 Apr 2026

Your opportunity to share how patients and the public are involved in health data work

We are carrying out a UK-wide project to understand how patients and the public are involved in decisions about how health and care data is used beyond direct care. This includes data used for research, service planning, evaluation, and improvement.

Who are we asking to take part?

Professionals – If your role involves the use, governance, commissioning, or delivery of health and care data – including supporting patient and public involvement and engagement (PPIE) we would value your insight.
Members of the public – If you are a member of the public already involved in activities such as advising, decision-making, governance, or public engagement around health data, we want to hear from you.
- Also for members of the public: Online focus group – Wednesday 6 May 2026, 10:30-12:00. We are also running a focus group with public contributors to explore experiences in more depth. Places are limited, and participants will be selected to ensure a range of perspectives. Please email PPIEinhealthdata@hqip.org.uk to express interest.

Why take part?

We’re building a national picture of what’s really happening in practice – what works well, what doesn’t, and where things need to change. Your input will help:

Identify what meaningful involvement looks like in practice
Surface common challenges and barriers
Highlight opportunities to strengthen involvement across the UK.

Complete the survey

All responses are anonymous and will directly inform national insight and future policy and practice. The survey takes around 10 minutes and will close on Monday 18 May 2026.