Rethinking the process of patient and public involvement

Patient and public involvement (PPI) in the design and delivery of health research is increasingly a prerequisite of funding. Research funders are now placing an emphasis on researchers measuring the impact of patients and public being involved in research and demonstrating the value of PPI. 

But where does this drive for measuring impact come from? And what is the purpose? In a previous Campus article, I outlined key issues to consider when developing plans to assess impact. But researchers should place as much emphasis on evaluating the process of patient and public involvement as they do on measuring the impact of PPI on decision-making.

A key driver for measuring the impact of PPI is the influence of evidence-based medicine, in which PPI is akin to an intervention that is measurable and quantifiable. The focus here is on “proving” that the involvement works, that patients and the public have improved decision-making and/or research outcomes, so we can justify it. 

This approach comes with several problems, though. It seems odd that the focus is on measuring the impact of one group of stakeholders. There is not an emphasis on measuring the impact of, for example, researchers and clinicians. It is assumed that they improve the research. 

And sometimes PPI will not improve research. For example, researchers may want to liaise with public contributors over recruitment materials, but the approach and materials are already so good that the public contributors have no need to improve them. Do we therefore conclude that public contributors had zero impact? The value of public contributors in such a scenario is not in improving decision-making but in verifying the work of researchers; and this needs to be captured in any evaluation. 

• Key challenges for patient and public involvement leads
• ‘Doing human’: ways for researchers to make patients feel comfortable to express themselves
• Community-engaged research can give a voice to marginalised people

And what if the public have a negative impact on the research? Do we then conclude that public involvement should cease or that it’s a bad thing? When PPI fails, it could be due to a variety of factors, including poorly thought through plans. 

So, would it be better to also focus on improving the process of involving people?

Objections aside, measuring the impact of public contributors on research has another purpose: to feed back to patients and the public on the outcomes and value of their input. People will usually want to know about progress of the work they have been involved in and difference they have made. It is the polite thing to do and will make them feel valued and motivated to be involved in research again.

So, the emphasis should not just be on outcome but on process as well. From this perspective, PPI is perceived not as an intervention but as a good and ethical thing. People should be involved in decisions that impact them. We don’t have to prove that public involvement works any more than we have to show that the involvement of other stakeholders in the research process works. 

Instead it is the PPI journey – the process of how we go about bringing in patients and the public – that is important and should be evaluated. The emphasis here is on finding ways in which we can involve people better. We want to find out what works, what doesn’t, and what we can do better to ensure that the public are involved meaningfully. Do public contributors have an opportunity to express their view? Are these views listened to and valued? We assess the extent to which we adhered to principles of PPI, such as the UK standards for public involvement. This insight can then be used to improve PPI. Tools that can help with evaluating the PPI process include the cube evaluation framework and the ARC West PPI log. 

So, researchers should focus as much on evaluating the process of PPI as they do on what has changed as a result of PPI. What should this evaluation entail?

1. Assessing the extent to which researchers adhere to the principles underpinning involvement: Use frameworks such as the UK Standards for Public Involvement to assess the quality of the PPI arrangements.
2. Getting public contributors’ views: Public contributors must get the opportunity to express their views on what has worked and what hasn’t. The views of other stakeholders can also be useful.
3. Using findings to drive continuous improvement: Identify what worked and what didn’t and use this information to improve the PPI journey on a project and for future projects.
4. Feeding back to public contributors: Make sure that public contributors receive feedback on both the impact of their contributions and on any changes in the PPI process going forward. 

Tracking changes should be less about “justifying” PPI and more for the purpose of feeding back on progress and impact to public contributors. Sharing the differences made is polite and helps public contributors feel valued and motivated to stay involved.

Gary Hickey is a senior research manager for the National Institute for Heath and Care Research at the University of Southampton.

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