Journal Article

P105 One SWALLeOeW does not make a summer: patient public involvement throughout a study

Sykes, Catherine, Allan, Douglas, Grace, Sarah, Waterman, David, Sweis, Rami, Cordell, Amanda, Brittain, Katie, Ward, Chris, Dhar, Anjan

2025

Overview

IntroductionPatient Public Involvement (PPI) can enhance research impact; however, it is often poorly described, with a focus on study development. Here we describe an additional utility of PPI in interim qualitative analysis during the recruitment phase of SWALLeOeW, an NIHR supported study investigating the use and acceptability of oesophageal physiology investigations in Eosinophilic Oesophagitis (EoE) and the impact of treatment on oesophageal function.MethodsThe SWALLeOeW advisory group consists of three people with EoE, the Founder of the EOS Network and a patient with experience of oesophageal physiology tests. PPI members are reimbursed for time, travel and subsidence based on INVOLVE principles.Using Braun and Clarke’s1 reflexive thematic analysis and drawing on Stocker et al.’s (2021)2 work on collaborative data analysis, a workshop was held to analyse data collected to completion to date (n=5). The advisory group read Coding Reports (transcripts of all conversations) on topics including ‘Acceptability’ and ‘Diet & Food’ in advance. Mind maps were created to extract meaningful, coherent content.ResultsThe SWALLeOeW advisory group has contributed to study conceptualisation, development of data collection materials and, as described here, interim interview analysis. When interpreting accounts of participant interviews the group summarised the following key ideas:Participants find physiology investigations challenging, but are motivated to continue in the study and repeat investigations post–treatment in order to better understand their condition ‘Anything to get further information’. This drive to seek information was felt to be linked to a degree of suspicion and doubt surrounding their EoE diagnosis and the group felt there was a recurring narrative of ‘is the support going to last’. Socially minded altruism also drove participation: ‘I felt good to be assisting the research in something that is not very well known’.Participants are often ‘well people’ and display a desire for health autonomy. Difficulty navigating dietary restrictions can challenge this autonomy: ‘So, you know, is it all wheat? Is it gluten? Is gluten wheat?’.Participants indicated that study participation improves access to care. The advisory group also provided a perspective that the study provides a point of contact and emotional support for those with a new diagnosis.ConclusionsWe demonstrate that PPI is practicable in both design and early analysis of SWALLeOeW study data. Involving PPI members as citizen scientists provided new perspectives, enriching analysis of transcripts. This interim analysis will contribute to the development of final themes in the SWALLeOeW Study with suggestion that diagnostic clarity and support will be pertinent to this ongoing work.ReferencesBraun, Clarke. APA. 2012;55-71.Stocker, et al. Health Expect. 2021;24(4):1349–1356.

• Publisher: BMJ Publishing Group LTD
• Subject: Altruism / Autonomy / Data analysis / Data collection / Diagnosis / Dietary restrictions / Esophagitis / Esophagus / Gluten / Leukocytes (eosinophilic) / Physiology