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Getting creative: Finding ways for patients and public to express themselves

Usually, researchers invite the public into their world. A traditional research world of steering committees, ‘papers,’ agendas and meetings where writing or speaking in a certain way is valued. A world in which researchers are usually comfortable and are familiar with. But for many people, this world may be new and perhaps intimidating; with its written and unwritten rules and conventions, some people may not feel comfortable and it may not be a format in which they can best express themselves and contribute to the research. They may also find it too boring to even contemplate getting involved!  

There is nothing inherently wrong with these traditional approaches to research and involving patients and public, but it can sometimes be a good idea to look beyond these approaches; to embrace ways, often creative and innovative, in which we can address power differentials and ensure that the public view is expressed. For example, using the arts or storytelling, can sometimes be a more effective way for patients and public to express their views in research. These approaches tend to rely less on a person’s ability and willingness to read, digest and understand research papers and the need to have at least a certain level of confidence to be able to raise and articulate issues, often in formal meetings, verbally.    

To get the best from some people we may need to create an environment in, and find a means by, which they can feel comfortable and express themselves. For example, if a research team was trying to co-produce, with young children, the ideal look of a hospital ward where children would stay overnight, it’s unlikely that the research would be best served by bringing the children into a meeting room, getting them to read half a dozen academic papers, and ask them to articulate a view at a formal meeting full of adults! It would better to invite them to a playroom, ask them to draw pictures about what a ward could look like, and/or choose from a series of pictures, activities that they would like to engage in. The young children are more likely to feel comfortable in a playroom, and power differentials have been addressed (at least in part) as the young people are often as comfortable as adults when drawing and choosing pictures (perhaps more so!). It is a way for them to express their view.  

There are a range of different ways to involve patients and public in research. There is no single ‘right way’; researchers need to think about what would be most appropriate for the people they are trying to involve. A range of approaches could even be used in one project. For example, setting up a patient advisory group to monitor the progress of patient and public involvement plans, and involving other patients and public via the use of arts-based activities throughout a project. The key point to remember is that researchers should meaningfully involve patients and the public in research – find a way for people to express themselves that works for them. 

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.