A Critical Reflection on Public and Patient Involvement

Though many readers of this blog will know that my primary area of research interest is critical thinking and, more broadly, cognition and education, a large portion of my research has been conducted in health psychology.

Years ago, I was working on a project that included/offered Public & Patient Involvement – or PPI, which refers to the involvement of people with lived experience of the particular condition under investigation as consultants throughout the research process (e.g., Crocker et al., 2018a,b; Dwyer et al., 2021).

At the time, I'd argue that many researchers didn’t really know what it meant/was all about; and I imagine that many funding applications included it primarily because it was the newest buzzword at the time (i.e., win the funding and worry about the rest later).

I joined the project not long before the rollout of its intervention and was advised that I could contact our PPI member – a young woman with the chronic condition we were researching – if I needed any advice. I had been further advised that she had not really been contacted yet for anything other than a formal welcome to the project.

Due to the timing at which I joined the project, the primary focus was on finalising the intervention, analysis design, and procedure (all of which had largely been developed before my arrival); and getting the ball rolling. Nevertheless, I had sent her the protocol and asked for any feedback.

She got back to me with a couple of minor issues, none of which were feasible to incorporate (i.e., in light of good design practice). In fairness, I wasn’t surprised because this individual didn’t have appropriate training in research design, methodology or data analysis – how was she supposed to know what can and can’t be done? The study continued, and, to my knowledge, she played no further meaningful part. There was no real benefit of this PPI.

In my last post-doctoral role, I joined a project from the start of the funding’s lifespan alongside a PPI member who joined the research team part-time. We also had a five-member PPI panel to consult with at different stages of the study. When my boss asked me about my past involvement with PPI, I advised that I was wary of it, having a less than positive experience with it in the past, as if it were like some collegiate experimentation with drugs gone wrong.

She was also relatively inexperienced with PPI but saw its potential and planned her study to maximise PPI's impact – and it paid off. PPI was one of the study’s saving graces, especially in light of trying to conduct a randomised-controlled trial amid COVID-19. Even before COVID-19’s arrival, the beneficial impact was apparent – as well exemplified by our PPI member, who wound up becoming our Embedded Patient Researcher, a term coined during this project (see Joyce, Dwyer & Hynes, 2021).

I often note on this blog that open-mindedness is crucial for critical thinking. It helps us consider our perspectives, re-evaluate and change our minds when appropriate. It’s good to change our minds, despite what a prior commitment bias might implicitly tell us. Changing our mind implies we’ve done some thinking – and that’s what wound up happening to me concerning PPI.

My experience with PPI before that was just that – one experience. In retrospect, I look at it as a missed opportunity. It was partly my fault – and I do use the excuse that we really didn’t understand the nature or even the potential of PPI because that’s the truth. It’s also crucial to the point I’m trying to make... Have you ever been a part of any research endeavour where PPI might have been appropriate? Was it utilised? If no, then why not? Do you think it would have benefited the project?

Considering these questions, do you find yourself having a less than positive feeling about integrating a PPI element into your research? If that’s the case, then let me reframe the scenario:

Do you truly understand what PPI is, and if so, do you think it could be beneficial if implemented appropriately?

This is the crux of the point.

Given that PPI is relatively new, I think there will always be a bit of trial-and-error. Treating PPI solely as a support – a nice way of saying 'on the bench at the sideline' – as in my first experience was insufficient for getting the most out of it. PPI needs to be active. What made it work in my last post-doctoral work – and why I changed my opinion on it – is how it was organised and infused into the work. PPI was there from day one of the project’s lifespan.

Sure our PPI members weren’t trained researchers, but as we had organised the time to both engage them regularly and subsequently account for their suggestions in our designs and across the implementation of our methodology (along with COVID-related amendments), the process was not only feasible but markedly improved because of such input.

Even though I’ve developed a stronger positive outlook on PPI, I can still easily see how it would fail. We infuse many factors into the research programs that we have great faith in but ultimately fail because we didn’t integrate them appropriately. Why should PPI be any different?

Simply, PPI will work correctly if you use it correctly. So, if you currently think about PPI as I used to think, I implore you to reconsider that perspective – drop me a line and I’d be happy to speak with you about it.