Published in: Research Capacity Building

Patient & Public Involvement In Research – 5 Myths About PPI I Wish I’d Known

I started working in Patient and Public Involvement (PPI) by accident. I was happily working as a programme manager in a large research programme, focusing on delivery systems and facilitating the new relationship between academia and the health service, with a side order of mixed methods health services research. This was around 2010, and all was well. Then our public involvement lead became ill, and his role was given to me, with instructions to write the Public Involvement Strategy for the next round of funding. I panicked. I had no idea what I was doing. Fast forward 12 years and I now work in public involvement full time as a consultant.  

There are lots of acronyms for what I do, and these reflect the evolution of the public involvement field over the past 15 years. When I first started working with the public the acronym was PPI—patient and public involvement—but now I tend to think that a more appropriate acronym is PICE: Public Involvement and Community Engagement. Or just ‘public involvement’ works for me as a shorthand for involving members of the public in the decision-making processes linked to research.

This might be deciding what research gets done and which research questions are important, which research projects get funded by the government or charities, how research projects get done, and who gets to take part. The public, by which I mean patients, service users, advocates, carers, people and communities, sometimes staff, are crucial to making research happen. 

Here are 5 myths about PPI, common misconceptions that I wish I’d known about when I started: 

1. ‘Public involvement’, ‘public engagement’, ‘participation’… it’s all the same thing.

No it isn’t. Different sectors, funders and teams use these and other terms interchangeably; often people, even within teams, don’t understand each other’s definitions.  

I use the UK NIHR definitions, which frame public involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. This is an embedded, active process where people with lived experience or members of underserved communities help to make decisions about research. This might be deciding what research is important, what research gets funded, how research gets done and with whom, where and when it gets done, how results are disseminated and so on. 

Public engagement is a more passive process, ‘where researchers share information and knowledge with the public’ and there’s no direct link to decision-making, although members of the public and researchers might learn things as part of the process.  

Public participation is very specific. It means signing a consent form and taking part in a research project.

Ultimately, I don’t think it matters what definition you use, as long as: a) everyone has the same understanding and; b) when you involve the public in your decision making, it isn’t tokenistic (and that is a whole Pandora’s Box of things to think about – see Myth No. 4).

 2. PPI is the same thing as Equality, Diversity and Inclusion (EDI), therefore the PPI team/person can do both.

Oh, no. This is an interesting one because although there is a lot of overlap between these two areas, the concepts are separate. Equality, Diversity and Inclusion (EDI), applies to all aspects of public life, while public involvement focuses on the narrow field of decision-making.

But you cannot ‘do’ public involvement without considering EDI and applying EDI ‘best practice’, and conversely, to achieve high levels of diversity within your research participants so that your subject pool better represents the population of interest, you need public involvement as a mechanism to bring those disparate voices to the decision-making table.

3. It’s someone else’s job.

Ha! No. This is a common myth. What I’ve learnt in the last decade is that much like research capacity building, public involvement happens in different ways at different levels: in research projects, in teams, and in organisations.

There are lots of reasons to embed public involvement within your research system. It can improve the quality and feasibility of the research itself. Public involvement can help researchers gain a broader understanding of their chosen research field. It can also empower people with lived experience by increasing awareness about their condition, reducing isolation and boosting their confidence to share their unique knowledge.  

I also believe there’s a moral imperative to this work. A substantial percentage of health research is funded through taxation or public donation. As such I believe that members of the public have a right to be involved in decision-making of research which will (or should) impact health and care services.

There is a whole spectrum of approaches to involving the public in research, depending on what you are trying to achieve. One person in a team cannot possibly be responsible for it all; it’s everyone’s job, it’s your job. So, we need to think about how to embed public involvement within decision-making systems, in the operational management of research.

 4. Public Involvement is easy.

It really isn’t. There are some big challenges out there which can stop meaningful public involvement in its tracks, including, but not limited to: 

1.  Lack of knowledge/skills of researchers. There’s no shame in admitting that it’s easy to avoid public involvement, or be tokenistic, or that many researchers don’t really understand the what, why, where, when and how of good public involvement. A lot of researchers feel intimidated by public involvement, and that’s OK. It can be nerve-wracking, but I think we all have a responsibility to improve our practice.  
2. Staff turnover. Researchers tend to be a transient bunch and often the job of public involvement falls on the most junior people, the trainees. So, there’s a capacity building aspect to this work and a need to think about how it fits with the organisational setup and management 
3. An increased recognition of EDI issues, not just in research but also in the wider health and social care landscape. In the UK, the COVID pandemic has laid bare the historical (and current, let’s be honest) inadequacies of the research system when recruiting people for research. We’ve tended to target the low hanging fruit (people who are white, middle class, educated) to meet recruitment targets within the tight timescales often associated with research delivery. We are now seeing a big shift in the way that we work, a shift towards community engagement, a greater focus on trust and relationship building, and this is uncovering many systematic challenges with the way that we organise research. I often feel that the research system actively works against meaningful public involvement. We’re on a steep learning curve here and it is often an uncomfortable place to be. We’re starting to see proposed solutions that show promise, such as the use of equality impact assessments in research, but there’s a long way to go.  
4. Impact. Oh gosh, impact, this is a big one. What do we mean by ‘impact’? Impact on what? Impact for who? And once you know that (hopefully a shared understanding between all your interested parties), how do you measure it? 

5. You’re on your own.

This last myth is one I really wish I’d known the truth about 12 years ago; it really is the most important—you’re not on your own.

When I’m asked about the one thing that people need to know in relation to public involvement, my advice is find your people! Reach out, build a network, a community of practice (LinkedIn and Twitter are great places to start). Share learning, documentation, strategies, successes (lots of these, there’s great work happening but we need to be better at shouting about it), and failures (lots of these too! But we must be brave and share them so that other people can learn from our mistakes). Grab opportunities to learn. This always reminds me why I’m doing it, feeds my motivation and stops me feeling isolated.  

Life is unpredictable and so is public involvement. Sometimes you don’t end up where you imagine. Sometimes public involvement can be overwhelming. But actually, what I love about public involvement are the things that make it hard. I love not knowing what’s going to happen in any given conversation, having to think on my feet and be flexible to help bring diverse voices into decision-making.

I love figuring out how to build public involvement into operational systems so that it becomes normal and routine, so that diverse voices, and the research they influence, can have a real impact in practice. And I love, love, love the people I get to talk to every day and get to know—they can be inspirational. And I have a lot of fun at work. That’s a pretty good reason to get out of bed in the morning. 

Christine Smith is a Patient & Public Involvement in Research consultant in the UK, working with researchers in the health and social care services world, including one of the key funders of UK health research, the National Institute for Health and Social Care Research (NIHR). She is the founder and director of Christine Smith Consultancy, research and consultancy services for public involvement in health and social care research (PPI).