What underpins effective patient and public involvement in health and social care research?

Many health and social care research funders, in the UK and beyond, now require that research proposals include patients and the public in the design and subsequent delivery of that research. This can lead to improvements in the quality and relevance of the research. 

But what makes for effective patient and public involvement (PPI)? Two key approaches underpin effective PPI: a rules-based approach and a values-driven one.  

Rules are those things that we must do. For example, some funders tell us that we must have PPI plans, that there must be a public involvement lead, that people need to be paid for their work, and that you need to have at least two members of the public involved. These rules are positive in that they ensure that public involvement is a consideration in research proposals and set criteria by which a proposal will be assessed. As with all good rules, they come with a consequence for not complying. In this case, if researchers don’t include public involvement plans in their proposal, they won’t get funding.

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However, there are dangers in over-relying on a rules-based approach. Some people will do the bare minimum to comply with the rules. They will tick the boxes and meet criteria that they must but no more. Early on in my research career, I was involved in research in which we recruited two members of the public on to a steering committee. They received little support, struggled to understand the papers they were given, and often couldn’t make meeting times because of other responsibilities. Subsequently, they were unable to make much of a contribution, but the PPI requirement had been fulfilled.

Others will see the rules as a set of criteria that can simply be met by contacting a PPI adviser at the last minute, who will then bolt on an off-the-shelf PPI plan to complete the proposal. Anyone who has worked as a PPI adviser will be familiar with the Friday-afternoon call that runs along the lines of: “We’ve written our research proposal. Now we just need you to advise on the PPI part. Oh, and it needs to be submitted on Monday.” (I exaggerate only slightly.) Also, we can’t have rules for every eventuality; every research project is unique, throwing up different PPI challenges requiring flexibility and often innovation in how we respond.

So, what is the answer?

An alternative is a values-based approach. In this approach researchers internalise the values of PPI and make it part of the culture of the research team and the way they think about and do their research. Researchers think about and embrace PPI. Why is it important and what does it mean for their research?

In this way the PPI will be truly embedded in the research rather than bolted on as an afterthought. A good reviewer can usually tell when something has been bolted on and either reject the proposal or send it back to the researcher and ask them to revise it. The UK public involvement standards are a good place to start. The six standards – inclusive opportunities, working together, support and learning, communications, impact and governance – are a set of values that will find expression in different ways for each project. They provide a framework for you to consider how your PPI plans can be tailored to the needs of that piece of research. Your PPI plans will differ depending on the issue, the budget, the context. There is no one-size-fits-all solution. PPI is more art than science.

However, there are dangers to having no rules and over-relying on a values-based approach. Not least is that many, already busy, researchers might perceive it to be an extra burden and cost, and PPI would likely slip down the list of priorities from “must do” to “would be nice to do”.

In truth, of course, we need a balance between the rules and the values. We need PPI processes and procedures, and we need PPI to be part of the research culture. But my firm belief is that a more values-based approach, in which researchers believe in and embrace why they are doing PPI, and have thought about how it could best work in their research, will lead to better, embedded, more meaningful and enjoyable PPI. So, follow the very good rules that research funders have in place and work with PPI experts to embed the values throughout your research.

Gary Hickey is head of Agora Digital Centre in the School of Healthcare Enterprise and Innovation at the University of Southampton.

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To find out more about how to do patient and public involvement, register your interest for the Agora Digital Centre introductory summer school, The Art of Patient and Public Involvement. Send a message to agoradigitalcentre@soton.ac.uk.