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Why should we measure the impact of patient and public involvement?

Written by Dr Gary Hickey, Head of Agora Digital Centre

Measuring the impact of our patient and public involvement (PPI) activities in research is something that researchers and public working in the PPI world are increasingly being asked to do – by reviewers of research proposals, funders, and our employers. Indeed, impact is one of the UK public involvement standards which many researchers use to guide their PPI activities in a research project. As someone currently working on a few research projects and tasked with measuring the impact of PPI, this is a topic very much at the forefront of my mind!  

Are we looking to prove or improve? 

We live in a world where we have to articulate, and often quantify, what it is we do and achieve. And if we cannot measure it then that activity ceases to be valued. But people (including me!) often get confused about what we are measuring – not least, I suspect, because different stakeholders are looking for different information. We should be asking ourselves, why do we want to measure impact? Is it to prove that PPI is a ‘good thing’ or is it to improve how we do it? I would lean very much toward the latter. 

I will draw on a line I used to adopt in a previous career, working for a regulator of ethics in local government. During this time, I was often asked to provide evidence to support the proposition that having a strong ethical environment led to better decisions i.e., prove that having a strong ethical environment is a good thing. My response was always the same; some things are just inherently ‘good.’ If we evaluated the impact of ethics and found that a strong ethical environment did not lead to better decisions, is anyone seriously going to propose that we therefore promote poor ethical practices?! Of course not. 

Similarly, I would argue that having the public involved in research and decisions that impact upon them is a good thing. They have a right to be involved. Again, if we found that it did not lead to better decisions or outcomes, are we seriously going to suggest that we should stop people getting involved in research? And, as an aside, we do not put the same scrutiny around the involvement of, for example, health care professionals being involved in research. We just accept that they can add value. 

So, why should we measure impact? 

For me, the key reason that we measure the impact of PPI is to improve how we involve the public. We need to focus on what did and didn’t work. And, in order to drive improvements within a project, we need to ensure that we evaluate the PPI in our research as we go along rather than just at the end. Nor should we get too hung up on seeking to identify what changed as a result of public involvement. Firstly, in really good collaboration it is often difficult to isolate the influence of one individual or group – decisions and direction emerge from a discussion in which people build on each other’s ideas. Good PPI isn’t a power struggle between public and professionals in which one triumphs over the other. Secondly, having the public confirm that a researcher’s proposed decision or direction is the right one is just as important as them changing that decision or direction. 

There are other reasons for measuring impact. Firstly, we are (usually) spending taxpayers’ money on PPI and evaluating impact helps ensure that researchers are accountable to both funders and the public. Secondly, measuring impact and developing an evidence base can also have longer term benefits for the world of PPI. It can help us develop PPI as a respected discipline, giving it credibility and help us argue the case for the importance of public involvement. 

In short, when we consider the ‘impact of PPI’ we should look to focus on measuring the impact of PPI to improve how we do it, rather than to prove that it is a ‘good thing’ – accept that it is. 

Do you want to find out more about patient and public involvement and engagement? 

In our new, upcoming course ‘Nothing about us without us,’ you can learn about what makes good patient and public involvement and engagement in health and social care research. Register your interest for the course via this form or follow us on social media to hear news about the course and its release.