Patient and Public Involvement and Engagement (PPIE) is vital to the development, delivery and dissemination of clinical trials, with individuals' “lived experience” key to asking and answering research questions that are important. Furthermore, there is a growing impetus for researchers to engage with the public more broadly to explain the importance of the research, given public interest and as much of it is funded by the public through either taxation or charitable donations.
At Nottingham Clinical Trials Unit (NCTU), we believe in the ethos “no research about us without us”. To that end we aim to involve patients and the public in all aspects of clinical trials research, in-line with University of Nottingham policies. We embed co-design and co-analysis practices in our research with patient and public involvement and engagement (PPIE) partners and strive to increase the inclusion of under-served groups, both as PPIE partners and participants. We provide ongoing bespoke training and support for our PPIE partners determined by their individual needs and responsibilities associated with the role they undertake. We pay for our PPIE partners’ activities in-line with NIHR guidelines.
We appreciate the unique role our PPIE partners play in research. We recognise and celebrate their contributions and the importance of their lived-experience in the design, delivery and dissemination of research, ensuring we focus on meaningful questions and answer them robustly.
We work flexibly with existing PPI groups such as those set up by the University of Nottingham Biomedical Research Centres or create new groups in response to a project’s needs.
As one of NCTU's areas of strength is designing and conducting perinatal trials, input from parents and expectant parents is sought from members of the Bump2Baby Facebook group
, which is led by Eleanor Mitchell
and an independent parent and public involvement consultant, Rachel Plachcinski. This group gives members an opportunity to contribute to new and ongoing perinatal studies, hear about current maternal and newborn health research and gain a deeper understanding of research generally.