Researchers' experiences of patient & public involvement

Researchers’ examples of the value and impact of involvement

A common theme in our interviews with researchers was the importance of learning about involvement by example and through personal experience (see also ‘Learning from experience of involving patients and public’). In this summary, therefore, we focus on some of the practical examples researchers gave us where they felt involvement had made a real difference to their work and their thinking.

This included, for example, improving recruitment and materials for informed consent; designing better data collection tools; making studies more attractive to potential participants; but also more broadly coming up with new research ideas and directions, and changing the way researchers think.
As David and Sarah A suggested, involvement can have an impact on the researchers and their way of thinking as much as on specific aspects of the research itself. For Felix, this impact on researchers, and on the people who get involved, was probably the most important kind.
Patients and members of the public who get involved in research often report that they do not get enough feedback about the difference their contribution has made, and this is something researchers also identified as an issue. This links to the question of how impact is defined and measured, which is discussed separately (see ‘Measuring the impact of involvement’). It was also suggested that researchers should be more open with people about the fact that not all suggestions they make can be taken on board.
Some researchers had tried involving people in data analysis with varying degrees of success.
Sometimes researchers had doubts about the way patient or public input might impact on their research. Stuart was content to accept compromising some aspects of scientific method in order to undertake a study that was going to recruit and be useful to people, but Kristin and Anne noted that sometimes less well informed input can waste time and be disruptive. (See also ‘Doubts, worries and debates about involvement’). The issue of training people so that they can contribute more effectively is considered in ‘Training needs for involvement’ and also in our website on Patient and public involvement in research - Training and learning.
See also ‘Reasons for involving people’ and ‘Measuring the impact of involvement’. 

 

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