Cancer research has transformed countless lives through new treatments, earlier diagnoses, and improved survival but is most effective when it is shaped not only by scientific expertise, but also by the lived experiences of patients and the public. This approach, known as Patient and Public Involvement and Engagement (PPIE), is helping researchers design stronger, more relevant, and more impactful studies. 

What is PPIE? 

Why is PPIE in cancer research important? 

For researchers, embedding PPIE into projects is about much more than meeting funder requirements, it’s about improving the quality, relevance and reach of science from discovery to clinical research. Studies consistently show that involving patients and the public can lead to: 

• Better study design – Research questions, priorities and methods become more aligned with real-world needs, reducing waste and increasing the chances of meaningful findings. 

• Improved recruitment and retention – Participants are more likely to join and stay in studies when materials are clear, accessible, and relevant.  

• Greater impact – Findings can be communicated more effectively to patients, clinicians, and policymakers, ensuring that results reach the people who need them most. 

• Increased trust – Transparency between researchers and the community can build trust and lead to more involvement from underrepresented communities.

Even in discovery research, where the translational benefit may not yet be clear, PPIE has an important role to play. Involving patients and the public in early-stage research can: 

• Explore ethics and acceptability early – Patients and the public may raise questions around the use of certain models, technologies, or datasets before they become barriers later. With the growing use of artificial intelligence and concerns over personal data, this early input is increasingly valuable.  

• Strengthen funding applications – Funders increasingly ask applicants to demonstrate real-world context and potential impact, even for discovery research. 

• Build long term advocacy and support - Building trust and understanding in basic science fosters public advocacy for long-term investment and creates a culture of inclusion across all stages of research.

• Provide fresh perspectives - Simple but profound questions from patients often spark creativity and encourage researchers to think in new ways. 

• Improve communication - Explaining discovery science to non-experts helps researchers articulate the significance of their work, which strengthens engagement with funders, collaborators, and the public. 

 A supportive approach for researchers 

• review materials such as lay summaries, participant information sheets or consent documents 
• be part of an advisory group early in the design phase 
• support grant submissions 
• disseminate findings  

• Discussion based: focus groups, interviews 
• Feedback based: surveys, reviewing study documents 
• Decision making: joining advisory groups or committees 

Building a culture of collaboration