Patient and public involvement in a pilot randomised controlled trial: Recasting the boundaries between ‘us’ and ‘them’?

2014 Conference

Abstract: In this paper we explore the development of a research project based on a question generated independently by people with diabetes and a Diabetic Specialist Nurse. The question was, ‘For people with diabetes attending an out-patient appointment does the use of a computer-based tool, designed to help identify issues for discussion in the consultation, improve communication?’ This paper explores the experience of working on the development of a pilot randomised control trial designed to address this question from the perspective of non-academic research partners, that is health care professionals and people with diabetes.

Non-academics made clear contributions to the development of the research question, the development of the computer-based tool, training of staff implementing the tool and the on-going trial management group. As such they are clearly adding value to the on-going pilot trial. However, our non-academic research partners are more actively involved in different aspects of the project and there are significant fluctuations in active involvement, for example a frantic preparatory stage, followed by a lull before data analysis. These factors make it more difficult for our research partners to understand the overall trial process and to feel fully involved in the project. Feedback from non-academic members of the project team indicates that both health care professionals and patients experience these factors as important barriers to becoming involved in research. This suggests that the problem of involving patients and carers in research is part of a much wider problem of how researchers engage with research partners outside of academia.