Development of an “Aphasia-Accessible Participant in Research Experience Survey” through co-production

Feedback is essential for the development and enhancement of processes. Everyone who participates in research should have the opportunity to provide feedback on their experiences. This may be more pertinent for those with aphasia, who can face barriers to participation across a language-loaded research process. Their feedback is essential as a means of shaping more inclusive research practices.

Within the United Kingdom (UK), the National Institute for Health Research (NIHR) Clinical Research Networks (CRNs) conduct an annual “Participant in Research Experience Survey” (PRES). This survey collects feedback on the experiences of research participants who have taken part in NIHR-funded research with the aim of making improvements to the way NIHR research is conducted. It was identified by research nurses who administered the PRES that the initial adult version of the survey was inaccessible to people with aphasia. Therefore, the aim of this project was to co-produce an aphasia-accessible PRES, with a range of stakeholders, including people with aphasia, which could be implemented by the NIHR. The aim of this paper is to share our experiences and describe the process of co-producing the “Aphasia-Accessible PRES”. Finally, we provide a critical review of our processes to contribute to the development of Patient and Public Involvement and co-production in the areas of stroke and aphasiology.