Patient and Public Involvement

Their lived experience shaped the research questions, terminology, and framing of review objectives. Patients valued personalized information that could help them understand treatment risks and ask direct questions. PPI has documented benefits for researchers and patients, but can also create burdens and negative experiences. Patients expressed a need for more self-management and personalisation in follow-up care. The project is designed to shift research agenda-setting toward South Asian community voices and community benefit. Patient input in study design can help ensure relevant endpoints and practical recruitment and retention considerations. Patient perspectives can improve research design and conduct by making studies meaningful and acceptable to people living with serious conditions. PPI can improve research processes such as question selection, materials, recruitment, implementation, and dissemination. PPIE can strengthen research by shaping priorities, study design, transparency, patient-relevant outcomes, legitimacy, and uptake. Early lived-experience input helps make recruitment strategies, consent processes, and assessments acceptable to potential participants. PPI can…