Lessons learnt from developing an ethnically diverse patient and public involvement group for breast cancer research

Objective

There is evidence that those who typically contribute to patient and public involvement (PPI) activities do not reflect the diversity of the population, and individuals from underserved groups are less likely to participate in healthcare research. For some researchers, understanding how to embed diversity into their PPI work can be confusing and challenging. The aim of this communication article is to reflect on our experiences and share the lessons learnt from developing an ethnically diverse PPI group to co-deliver breast cancer research.

Key points

Researchers must be realistic about timelines at both the grant application stage and during the research project, as finding contributors for inclusive and diverse PPI work takes time. Researchers will benefit from utilisation of existing expertise and resources within existing PPI teams at research institutions. It is vitally important to be clear about what researchers need in terms of contributors and what the PPI activities will be at different stages of the research project.

Conclusions

Conducting effective, diverse and meaningful PPI is a research skill that needs to be learnt and practised just like any other. Well-developed inclusive PPI has significant benefits for both researchers and the public.