This article shares findings from the PIONEER Health Data Research Hub at Health Data Research UK. The team engaged 350 patients, carers, healthcare staff, and public members to explore their views on how anonymised health data is used for research and their awareness of the NHS data opt-out.

This community essay shared by the British Science Association explores the challenges of effectively engaging communities with administrative data research. Providing practical advice and examples of involving people in data research to ensure it accurately captures and reports the experiences of the people behind the data.

This resource provides useful tips and practical guidance on how researchers can work collaboratively with people with lived experience to shape research projects through shared decision making and equal power.