Researchers' experiences of patient & public involvement

Stuart

Male
Age at interview: 59

Brief outline: Stuart is a practicing paediatrician, but the majority of his job is in conducting research. He also teaches. He has been involving patients and members of the public for about 26 years.

Background: Stuart is a Professor of Paediatric Epidemiology and the Director of one of the regional CLAHRCs (Collaborations for Leadership in Applied Health Research and Care). Ethnic background: White Other.

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Stuart trained as a paediatrician and then as an epidemiologist. Initially his career was divided between research and practice, but he began to think that the two belonged more closely together. He still practices paediatrics, but spends most of his time conducting research. He doesn’t see the point of conducting research in clinical work ‘if you’re not sure you’re making a difference’. He began involving people at every stage of his research and encouraging his team to do the same. He said this motivated by his clinical work, but was also the result of seeing good examples of involvement being put into practice. Stuart knows involvement is the right thing for his work. He feels good about what he’s doing because it addresses the stuff that matters to the people who will benefit from the research. 

Research about childhood disability has always been seen as difficult to do, but Stuart has seen how involvement improves this. He found that by getting people’s opinions on research he could design it in ways that would make it more likely for them to participate. He said in retrospect this was a bit obvious, but it wasn’t what had been done before. Stuart has changed research he’s been conducting based on the opinions of the people he’s involved. He said it made the research more meaningful, and, whilst he will always ensure his research is well-conducted, he thinks it’s important that it is useful. 

In Stuart’s experience, how people are involved depends on the research they’re involved in; people can bring a great deal of expertise no matter how long they have been involved.  He thinks it’s a good idea to pay people and reimburse their costs, but recognised that this depended on the resources available. He described discussions about how much people could represent others as a ‘red herring’ and said that the point of involvement was about making greater sense of research questions that may be helpful in making clinical decisions. 

Stuart believes involvement is here to stay, but that we need to ensure individuals and organisations are convinced of its usefulness and the benefits it brings. He would encourage other researchers to involve people in their work saying, ‘working with members of the public helps us to make sure that we ask the right questions in a way that produces information that will actually make a difference to their lives.’ He said that recruitment and retention of participants will improve as a result and ‘the studies you do will be much better’.

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