When training patients and the public in involvement…

A patient once told me that doing involvement means ‘turning the pyramid upside down’. It means starting with the patient and then working from there.

That’s the approach we used at The University of Exeter, where I worked with a fabulous team – Andrea Shelley, Emma Cockcroft and Kristin Liabo – to develop a different kind of training for patients and the public. We started with where the patients are at – having experiential knowledge that they might not realise is valuable to researchers, and perhaps being unsure how best to use it.

We purposefully didn’t start at the same place as the research experts who might ask ‘What do patients need to know about research to be involved?’ We didn’t talk about the research cycle, or different kinds of research, or any kind of method. We just talked about what the patients already know and the skills involved in being a critical friend – sharing knowledge constructively to change researchers’ thinking and plans.

We heard from patients who had considerable experience of involvement that they did understand this role, but only after spending some time doing it. A few people described sitting silent in meetings for the first few months while they tried to work out what they were supposed to contribute. We wondered if we could make this clearer at the start, to help people get up to speed more quickly, so that they could go into a meeting with researchers with a sense of what’s expected of them.

That’s not to say that all the technical info isn’t useful. It definitely helps patients understand the context they’re working in, which is also vital to knowing how best to contribute. We suggest our training complements all the excellent training already out there – and perhaps provides a helpful place to start – at the other end of the pyramid.