Nothing about us, without us – Debs Smith, Georgina Ferguson-Glover and Dr Mayara Silveira Bianchim

Did you know that over 1% of children in Wales are in care? These children often face major challenges and are at a greater risk of homelessness with higher rates of mental health struggles in their adult lives. Only 6% of care leavers go on to higher education compared to 47% of their peers.

Research can help identify what needs to change for those children. But how can that research truly reflect what your child needs? That’s where the Patient and Public Involvement (PPI) comes in. PPI is all about including the voices of those directly affected, like care-experienced children and their families.

Members of PPI groups help shape the research idea, making sure it focuses on real-life issues and reviewing documents to ensure they are clear and user-friendly. PPI members also attend meetings and suggest how findings can be shared in practical, accessible ways, like through social media or local events.

Dr Mayara Silveira Bianchim, Research Officer from Bangor University and Patient and Public Lead for the National Centre for Population Health and Wellbeing Research (NCPHWR) co-developed a PPI group which has contributed to over 20 health and social care research grants since 2022, securing over £8 million in funding for the Centre, and continue to ask: How can research make a difference if it doesn’t start with the people it’s designed to help?

Members of the group and experienced lay advisors, Georgina Ferguson-Glover and Debs Smith say, PPI must be embedded throughout the entire research process, right from the beginning – starting with writing research proposals. This way ensures people’s voices are heard and the research truly reflects the needs and perspectives of those it aims to benefit.

Debs said:

“It is time to make the model we use where everything is co-produced from the beginning the standard not the exception.”

Georgina added:

Research is powerful but only matters if the people it aims to help are placed at the heart of it.”

At Health and Care Research Wales we have a public involvement community where people can register to help shape health and social care research.

Watch Dr Bianchim along with PPI representatives Georgina and Debs Smith deliver a TED-style talk at our 2024 conference on the importance of public involvement.

Using children in care research and their contributions during different stages of the research is an example of excellent PPI, this talk will leave you thinking about what would happen if every research project started with the people it’s meant to serve.