King's College London

Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and address issues of health equity and accessibility.

Those most likely to be involved in research come from a narrow section of the population (older age groups, white ethnic and higher socio-economic backgrounds). Subsequently, many groups are underserved and underrepresented in research.

Underserved groups include children, young people and adults from different minority ethnic groups, socio-economically disadvantaged groups, migrants, asylum seekers, people with mental health conditions and multiple health conditions. Children and young people, as a group have few opportunities for research involvement. There is also limited evidence on optimal models for partnerships in research.

We used the principles of Experience-Based Co-Design to co-produce a resource for inclusive and equitable Patient and Public Involvement and Engagement in research with children and young people with sickle cell disorder and their families.