Genetic Alliance’s report set out how patient and public involvement and engagement (PPIE) can be more meaningfully embedded across the research system which is essential to high-quality research.
The report explores why patient and public involvement and engagement (PPIE) remains difficult to deliver meaningfully in academic research and draws on insights from researchers at different career stages to set out eight practical recommendations for systems-level change. While grounded in rare disease research, the findings are relevant across biomedical and healthcare research, combining longer-term priorities with practical ‘quick wins’ to help embed more inclusive research practices.
To read the report: Inclusion by design Report – Genetic Alliance
