I had never heard of Patient and Public Involvement (PPI) when I started my PhD at the University of Nottingham, UK, but slowly the term popped up more and more. When putting together grant applications, when publishing our work, and when designing future studies – we were asked to have PPI input. I am embarrassed to admit, but when I first encountered it, it was more as a tick-box exercise. I was planning a clinical trial for my PhD and I invited along a group of patients and members of the public, presented my work, and asked them to rate whether they thought it was important, if they thought it was feasible, and whether they thought that participants might find the study acceptable (and therefore enrol). That condensed down into a few sentences in my grant application.
It wasn’t until my first postdoc that I really came to understand the value of PPI. I joined a project that had had PPI from the very beginning. The grant application had been written up in conjunction with a small group of people affected by the diseases in question. So when I started the project, I inherited a group of four “PPI steering committee members” that I worked closely with during the project. After generating my first results, we invited them to join us at the university. I presented our results and got their feedback on what they thought was most important from their point of view, how they interpreted the findings, and what surprised them. Their insights helped me interpret the findings and navigate through discussion-writing. We continued this process with each of the new sub-projects. When it came to disseminating our work, their input was invaluable. Not only did they help frame the key messages, but they helped build a strategy to help reach those affected by the disease and used their own connections with patient organisations to help spread the word. Some of them took part in short videos about our research and let me tell you – hearing about the disease and research from them is much more impactful than hearing it from me.
Fast-forward to my interview for a postdoc at KI. I mentioned PPI and there wasn’t a flicker of recognition in my supervisor-to-be’s face at hearing the term. I think that sums up my experience with it in my current job. And I miss it so much. My research looks at the consequences of premature birth and I am dying to share it with the parents of preterm babies and people who were preterm themselves: “I did this research for you, what do you think of it? What stands out to you? Does this raise any additional questions that we should answer in our next project?”. So many questions and no-one to ask.
PPI in research has brought the most rewarding and difficult aspects of my work. Looking one of our patient partners in the face and telling her that we couldn’t do the research we had originally planned into her disease and seeing all the hope she had built up inside crumble – that was hard. Before that point, it was simply a frustration and an excellent point to bring up in the discussion. Seeing her made me realise the true impact of the fact. The hopes that were crushed and the message that needed to come out loud and clear in our paper. I learned so much working with our patient partners and truly believe it improved the quality of our work. On a personal level, it made the work more rewarding. Sometimes, it is easy to forget why we do this. I look at numbers on a screen day in and day out. I forget that each of those numbers represents a person – someone that may benefit from the work I do. It is my responsibility to those people to make sure that I produce the best quality and impactful research I can, and I do that by involving them in the process.
From my point of view, the research I have done is for the people affected by the disease (i.e., the patients). It is funded by the public in some way or another. Why shouldn’t they have a say in the research? Let’s say someone came along and decided that you needed a better house. So they built you one, without asking where you wanted it, how you wanted it, or what aspects of the house were most important to you. Then they stepped back, presented you the house, and felt terribly proud of themselves for giving you a new house as they thought that that was what you needed. But if that house doesn’t fulfil your needs – what is the purpose? Instead, if they had asked you before the project what you needed and what you wanted, then you might just have ended up with the perfect house. Part of this dynamic involves the researcher (or house-builder in my analogy) giving up some sort of control. Opening up discussions with the patients and members of the public where all parties enter as equals. Yes, the researcher may be the expert in the research methodology, but it is the patient that is the expert on what it is like to live with the disease. They can draw on their lived experience to provide insights that we, as researchers, may miss.
Have I managed to convince you to consider some PPI in your research? Stay tuned – next time I will discuss the practicalities of PPI in research, based on my experience.