Key challenges for patient and public involvement leads

The emergence of the patient and public involvement (PPI) lead reinforces its function and prominence in healthcare research. And, in fact, research funders increasingly require research teams to designate a PPI lead who is responsible for developing plans and managing related activities.

This dual-sided role – acting as both patient and public advocate and a member of the research team – is relatively new. So, here are three key challenges that I have encountered working as a PPI lead, with tips for how to address them. 

Get the balance right between being an advocate for patients and public and a research team member

There is, at least potentially, a tension in the role of the PPI lead in that, on one hand, they are an advocate for the public contributors involved in the project, but on the other they are part of the research team (often a proposal applicant).

The former role can involve ensuring that the public voice is heard and acted upon within the research and arguing for additional funds for public involvement. 

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However, the role is not about championing every demand or suggestion from public contributors. The PPI lead also has a duty and loyalty to their research team and must navigate the project practicalities and resource limitations. 

The role involves having credibility and trust of both the professionals and public on the research team. 

My key tips are to be clear about and manage expectations, and to try to develop trusting relationships with all.

The former involves ensuring that PPI is built into the project from the start. Be clear and transparent with the professionals and public on the research team about the roles and influence of public contributors from the outset. Ensure clarity around who does and is responsible for what is built into the research proposal. 

In terms of building trusting relationships, a key aspect is the approach of the PPI lead. A research project should never be a power battle between professionals and public. But do acknowledge that often a research project is less than perfect regarding patient and public involvement. The PPI lead should be able to explain this to both public contributors and professionals and negotiate a way forward. A collaborative rather than adversarial stance is recommended. People, generally, want to find constructive progress. 

Ensure that responsibility for patient and public involvement does not lie solely with the PPI lead

Embedding patient and public involvement in research is the responsibility of everyone. The PPI lead has overall responsibility and gives advice and guidance, but each person involved in a project should recognise the value it brings and have a role in ensuring that it happens. 

The danger in establishing a PPI lead role, however, is that it encourages a view that all PPI activities are the sole responsibility of that person. It risks creating the impression that other people working on the project do not need to concern themselves with PPI. And the natural consequence of this is that other research team members may seek to offload responsibility for PPI to a “specialist”. 

In short, PPI can become something that is bolted on to, rather than embedded in, the research. 

To address this, first, provide training on PPI for all those involved in the project – professionals and the public. The training should include sessions on why PPI is important as well as tips on what people can do to ensure that it is effective. Second, build in activities, such as reflective sessions, to assess the impact of PPI (for example, how well or otherwise the PPI arrangements are working). And ensure that other members of the research team are involved in these discussions, reflecting on what they can do differently and taking ownership of PPI.

Overcome a temptation to make PPI ‘an end’ rather than ‘a means’

Researchers who do not have PPI as part of their brief may have a perception that this work can be regarded as an end in itself. It follows then that PPI planning, and assessing its impact, can seem like its own project. 

So, how can a PPI lead ensure that the plans are proportionate to contributing to a successful research project? 

A colleague with whom I worked on an organisational restructure offered this advice: “Identify what is the core business of the organisation and then consider how each department or section relates to or supports that. If it doesn’t, it is likely not needed.”

So, applying this to a research project, the core business is the research, and the goal of PPI activities is to ensure that patients and the public can inform decision-making and improve the research. This stance will help shape PPI activities and also address the issue of proportionality; if it’s not achieving your goal, perhaps you shouldn’t be doing it. 

When developing PPI plans, start with what you regard as the gold standard for the work. But be prepared to compromise as the proposal goes through drafts. Recognise that budgets are finite, and we sometimes have to balance ideals with pragmatism. PPI does need to be meaningful rather than tokenistic. 

The role of the PPI lead is evolving. Moving towards clarity about the role will help ensure effective patient and public involvement in health research projects. 

Gary Hickey is senior research inclusion manager in the National Institute for Health and Care Research at the University of Southampton.