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Nov
22
2013

Doing PPI better: why we are always learning
by

Last week, I attended a fantastic conference on Patient and Public Involvement in Exeter, organised by the South Peninsula CLAHRC.

The conference was a very inspiring event with a wide variety of researchers, practitioners and people who have used health services and are engaged in Patient and Public Involvement (PPI) in research.

There were some great presentations at the event which really challenged me to think about how we work with people with lived experience in our own research at McPin, and reminded me that we have to constantly review what we do and why. The conference covered all areas of health providing a welcome opportunity to find out how others are developing PPI.

There is a new and important focus on what impact PPI has on health research. Two major studies (RAPPORT and Public Involvement: assessing impact through realistic evaluation) have made efforts recently to examine impact of PPI and understand how engaging with people who have experience of the research topic has changed the way studies are done. When their findings are published, these two studies should provide some useful guidance for all researchers to think about how effective involvement has been.

A key question that arose from both of these presentations is the importance of building a culture that values PPI, and builds it into their day-to-day practice. How can we ensure that PPI is not an afterthought, but that it is fundamental to all our work, is adequately resourced, and is valued by all researchers? There are no easy answers to this question, but I came away with two main thoughts. First, part of that culture must be to constantly question what we are doing, what impact has it had, and how can we do it better next time? Second, that this constant review must have people with lived experience at the heart of it. This means that researchers must be humble enough to accept when they’ve done it wrong, and people bringing their personal experience must be patient enough to recognise that we are all learning and don’t have all the answers.

As a case in point, the conference also contained a fantastic and thought-provoking discussion about what PPI researchers bring to studies. This focused on the question of whether it is possible to be both a lay person and ‘outsider’ in relation to research, and to develop and use research expertise. As people get involved in research, they develop skills and expertise. Does this make them more effective at providing lived experience input or less effective? And does it allow enough room for new people to get involved and for their experience to be valued too? How can we both value the research expertise and encourage those without it to share their views? I am grateful to the four people who presented this session and who gave an extremely open, frank and challenging perspective on this debate.

So, there are lots of questions which require careful thought, but what are we doing to address them? This summer, we held an event for people with experience of mental health services who were involved in mental health research and we asked them what they wanted us to do. We will soon publish a report which outlines how we will take these ideas forward. In the next few months, we will be recruiting people to join a panel who will guide our work by reviewing our proposals and our written information, and giving their views about how we can do this better. We will also be setting up a programme of work that is led by people with experience of using mental health services. We hope that these will provide us with two ways in which we can constantly challenge our work and push us to do it better.