Genetic Alliance UK has published a new report, ‘Involvement by design’, developed in collaboration with Rare Disease Research UK and the LifeArc Translational Centres for Rare Disease.
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.
Read the report on Genetic Alliance UK’s website here.
For any questions about the report and opportunities for dissemination at events, please email: Amy
Hunter, Genetic Alliance UK Director of Research (amy.hunter@geneticalliance.org.uk)
