Strengthening Research Through Lived Experience
Patient and Public Involvement (PPI) is when people with lived experience work in partnership with researchers to help shape the direction and delivery of research. Their perspectives can help guide many elements of a research project, from identifying important research questions and improving study design to reviewing participant materials and sharing research findings.
At Prostate Cancer UK, we believe that bringing the experiences of people affected by prostate cancer into research improves its quality and impact.
That's why our funding committees and reviewers consider how people with lived experience have informed research proposals. Patient representatives also sit on our funding committees and review all applications, helping to ensure that the experiences of men affected by prostate cancer are central to funding decisions.
How can people with lived experience strengthen research?
Relevance: Ensures research reflects the needs, priorities and experiences of those it aims to benefit.
Ethics and transparency: Helps identify and address potential issues early, supporting ethics approval applications.
Recruitment and retention: Makes studies more accessible and participant-friendly, enabling more people to take part and remain involved throughout the study.
Communication: Helps researchers develop the skills needed to communicate their research to non-expert audiences clearly and effectively.
Stronger funding applications: Many funders expect to see meaningful PPI within research proposals. Input from people with lived experience can also help ensure lay summaries within grant applications are clear and accessible.
Motivation: Hearing first-hand experiences can help researchers stay connected to the people at the heart of their research, providing a powerful reminder of why their research matters.
Applicants who have sought advice from patient groups consistently submit stronger applications. They are clearer, more focused, and better connected to the needs of men with prostate cancer.
Key Considerations for Meaningful PPI
Who to involve: Do you need specific lived experience, or would a broader range of perspectives be better?
Diversity: Consider representation across ethnicity, geography, socioeconomic background and different experiences of prostate cancer. Remember that carers, partners and family members may also provide valuable insights.
Numbers: Involve enough people to capture a range of perspectives, while ensuring everyone has space to share their views.
Practicalities: Be clear about the time commitment, frequency of involvement, and whether activities will be online or in person, so that PPI representatives can decide whether the commitment is manageable for them.
Payment and expenses: Budget appropriately to recognise contributors' time and reimburse relevant expenses in line with NIHR guidance.
How can we help with PPI?
Our Patient Representative Network (PRN) is a community of men and family members affected by prostate cancer who use their lived experience to help shape research. Researchers can work with members of the network both before funding is awarded and throughout the lifespan of a project.
We strongly encourage researchers to get in touch early, as this gives representatives enough time to provide detailed feedback and allows you to incorporate their perspectives into your work.
