First of all, before anybody makes the joke, no this blog is not about the scam PPI calls we all too often receive. Rather, Public and Patient Involvement (PPI) or Public and Patient Involvement and Engagement (PPIE) refers to the concept of research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. At the core, PPIE is getting the public involved and actively engaged in our research, as opposed to being involved only at the level of participation.
In terms of engagement, this refers to disseminating our research to relevant groups. There is the time old accusation of academics being stuck in an ivory tower. Rather than conducting research and sharing it solely with other academic colleagues, engagement through PPI or PPIE encourages us to make sure that the very people our research is about and based upon, are included and are told about what we have found. What have we found about their experiences? What can we suggest to improve their experience? To share our research with and receive feedback on from the most relevant individuals can only be a positive.
Involvement takes this a step further. Simply telling the public about our research is a positive step forwards for many of us, but still does not prioritise these individuals and their experience. Instead, involvement encourages us to get the public and patients actively involved in our research. The amount of involvement can vary, from the very initial idea of conducting the research, generating research questions, maybe the collection of data and part of the analysis. Simply inviting these members along to one group to help guide the focus of the project is a positive idea, but is not true involvement. PPIE relies upon giving the public and patients an active role in our research. Particularly in the case of patients, they are experts by experience. They have more knowledge of a particular condition than we will possibly ever have and the importance of this cannot be overestimated.
PPIE isn’t only important from the viewpoint as researchers, but can have huge benefits for the public that are involved too. INVOLVE has a range of stories on their website from those who have been involved in PPIE research. From these stories it’s clear that the public genuinely enjoy and feel valued as part of this research process and viewed it as a positive experience. In particular, Tom summed up the very essence of PPIE, by mentioning that he became ‘meaningfully involved’. PPIE is not a box-ticking exercise but is an opportunity to genuinely make our research better, more useful, and prioritise the very people we are doing this research ‘for’. Rather than doing research about or for people, it allows us to do research together and to put these very people at the centre.
Ultimately, PPIE asks us to reconsider our approach to research to ensure that we are putting our target group at the very forefront of our research. While this is particularly popular in clinical and healthcare settings, PPIE should be something that all researchers are actively moving towards. Initially, this may sound like quite a daunting and complicated process, but there is plenty of advice and many resources to help both us as researchers, and the public, such as INVOLVE. INVOLVE is part of, and funded by, the National Institute for Health Research (NIHR) and is at the forefront of this push towards public involvement in research. INVOLVE make PPIE as easy and simple as possible for all involved and really leaves no excuses for us as researchers to not start focusing on this integration of the public within our research.
Personally, I am completely ready and willing to provide a platform for the public to become part of the research process. Are you?
Claire Melia is a PhD student at Keele University.