If you have been involved in research for a long time ( say pre-millenium? ), chances are  you may be able to recall a time when research was done without public engagement; at best it  would  have been disseminated to the public at the end, but very little was attempted in terms of gathering  ideas or opinions from the people affected by the research during or before. 

Research may have been for the public, but not with the public or patients.  That always struck me as somewhat one-sided, like a conversation where  only one part has all the questions and all the answers. Things have changed substantially in the past decade, through the welcome introduction of Patient & Public Involvement & Engagement policies by a number of research funders, chiefly the NIHR and the Wellcome Trust, who have spearheaded these programmes.  

Slowly but surely,  the importance  of informing, engaging and involving the public with the research discourse gained traction amongst funders, universities, charities and  themselves. Finally, there was recognition that the voice of all those whom the research means to benefit or could affect needed to be heard. 

Granted, proper PPIE is neither easy nor cheap to carry out; indeed consulting with patients and public is a delicate and complex affair, requiring  dedicated training, emotional resilience as well as a good listening ear.  This is even more so in those research areas,  like  Paediatric Critical Care (PCC), where the PPEI members happen to be sick children  and/ or  their  immediate families. Still, the rewards for conducting respectful & inclusive PPIE can be incredible in terms of sharpening research questions, generating new brilliant ideas & directions and bringing research impact to life. 

I find it very exciting to see how the younger generations of researchers have embraced PPIE and are actively embedding it in their research; so a big applause to one such dedicated  PCC researcher, Emma Alexander, who has recently recounted her experience of  rooting  PPIE in her  research, https://blogs.imperial.ac.uk/perc/2024/12/20/having-an-impact-with-ppie-in-paediatric-intensive-care-research/.

Dr. Silvia Giampieri
Project Manager, PCC Research Incubator