What is patient and public involvement? 

Patient and public involvement (PPI) in research means research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘for’ or ‘about’ them (NHS Health Research Authority, 2026). This means that patients, caregivers, patient organisations, service users and members of the public contribute to the different stages of the research process, for example in identifying research questions, designing research and carrying out research, ensuring that it is a collaborative approach. 

Examples of PPI involvement: 

  • Thinking together with researchers about research questions that are relevant for patients. 
  • Suggesting important research outcomes from the views/experience of patients. 
  • Provide feedback or advice on information or infographics to be sent out about research. 
  • Advise on how surveys or interview questions should be worded so they are understood and reflect real experience. Analysis of surveys and interviews can also be done together with patients; they can provide more context into answers and can identify which results are most important for patients to know. 
  • Provide feedback on whether findings have been communicated clearly and are easy to understand. 

This ensures that patients can share their valuable insights and lived experience, which helps to shape and direct research. Ultimately, this will lead to more relevant outcomes of research that are actually useful in practice.  

Why is PPI important in research? 

When research includes PPI, this improves the quality, impact, and relevance of the research. Researchers may have different research questions and focuses compared to patients and members of the public. Patients will often have more knowledge and understanding of what questions have not been answered about their condition and how research can have real-world implications and improve their quality of life. By listening and understanding what research would benefit the people it is intended for, researchers are able to shift their focus, come up with new or amended research questions, and conduct research that directly addresses the needs of the population that it intends to help. It also helps to promote trust and transparency in research. 

“Practical knowledge from clinicians, scientific knowledge from scientists, and experiential knowledge from patients should all three be valued equally in order to truly improve healthcare/make healthcare as best as possible for patients.” 

Sophie Kemper, Endometriose Stichting

In October 2025, EUmetriosis had its first PPI weekend held in Zagreb where patients, patient organisations and researchers came together to shape the future of endometriosis research. Read more here: https://eumetriosis.eu/kicking-off-eumetriosis-ppi-a-weekend-in-zagreb-croatia/ 

References: 

NHS Health Research Authority (2026). Public Involvement. https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/