Patient and Public Involvement and Engagement (PPIE) is about working with patients and the public to shape, influence and deliver research to ensure it meets the real needs and concerns of communities. Research is carried out with them, not simply on behalf of them.
What does this look like in practice?
- Patients with lived experience help define research priorities and questions
- Public contributors co-design the research approach and dissemination
- Public Advisory groups can guide decision-making, challenge assumptions and ensure the project stays aligned to public interest
- Public contributors can write key summaries, consent materials and public-facing materials
- Public can design and deliver engagement activities, such as workshops, webinars, or community conversations
What’s the benefit for research?
- Better, more relevant research topics and questions
- Increased public trust and confidence
- Higher quality and more robust research outcomes
- Greater impact and real-world use which benefits the public
- Clearer, more accessible outputs
What’s in it for patients and the public to be involved?
- PPIE gives people a genuine voice in how data is used and how research is shaped. Research becomes a partnership rather than something done on people
- A say in research that directly affects them
- Greater transparency and trust in data use
- More inclusive decision-making
- Clearer, more accessible research
- Capacity building, empowerment and ownership of research