Our patient group's research into IBD wellbeing
A novel approach where patients define what matters most in IBD care
Listen to the Audiobook
Abstract:
Brief overview of the patient-led paper (5 min)
Full Paper:
Complete reading of the patient-led analysis (42 min)
You can download these files for offline listening by right-clicking on the player and selecting "Save audio as..."
Published outputs
These final journal versions are now live. The earlier preprints remain available as archival copies.
Crohn's & Colitis 360
Patient-led thematic analysis on the impact of living with inflammatory bowel disease: a contemporary appraisal of 415 patient-reported outcomes to improve care and research
Molly J Halligan, Aerin E Thompson, Destiny Docherty, Patricia Kelly, Emma Pryde, Cher Shiong Chuah, Rebecca Hall and Gwo-tzer Ho.
BMJ Digital Health & AI
Machine-learning approach to dissect the clinical heterogeneity of IBD-associated fatigue
Cher S Chuah, Rebecca Hall, Robert J Whelan, Peter D Cartlidge, Beatriz Gros, Eva Iglesias-Flores, Nikita Parkash, Ray K Boyapati, Clara Ramos-Belinchon, Solomon Ong, Emily F Brownson, Iona A M Campbell, Craig Mowat, John P Seenan, Jonathan C MacDonald, MUSIC Patient-Public Involvement Group and Gwo-Tzer Ho.
Patient-led thematic analysis on the impact of living with inflammatory bowel disease: a contemporary appraisal of 415 patient-reported outcomes to improve care and research
Molly J Halligan, Aerin E Thompson, Destiny Docherty, Patricia Kelly, Emma Pryde, Cher Shiong Chuah, Rebecca Hall and Gwo-tzer Ho
Abstract
Background
The conceptual context of wellbeing for people living with inflammatory bowel disease (IBD) is complex and encompasses many dimensions. Here, we employed a wholly patient-led analysis to provide a unique "patient first" narrative on wellbeing and IBD.
Methods
Our report draws on data from a Wellbeing Survey led by the Glasgow and Edinburgh IBD Science team as part of the MUSIC IBD cohort study (www.musicstudy.uk) with over 1375 IBD respondents in 2023 from the United Kingdom and globally. Our public and patient involvement (PPI) group utilized unstructured patient-reported experiences and conducted a high-level topic analysis and based their own lived experience of IBD to explore and assimilate the 415 free-text responses on the priorities and unmet needs of our IBD participants. Within the PPI group, a transparent structure of patient-led analysis, identification of key topic areas, discussion, and finally writing was agreed at the start of the project with minimal input from the clinical team.
Results
The analysis provided an in-depth exploration of several key themes affecting wellbeing in IBD patients. Of interest, the PPI group discussed and explored themes such as "what does remission mean?," access to care, expectations of self-management, mental and women's health. The patient narratives highlighted the variability of IBD experiences, the interconnectedness of these issues, and the importance of holistic, patient-centric approaches to care. The findings emphasize the necessity for improved support, both within and beyond healthcare settings. The findings are written and presented by our PPI group to provide viewpoints that resonate directly with people living with IBD.
Conclusion
Our patient-led research approach demonstrates that allowing patients to lead in analysis ("taking the reins") and reporting provides deeper and impactful insights into IBD experiences. By shifting the lens of analysis via the patient when integrating their perspectives into wellbeing, this study advocates for a patient-dominant approach to research and care, which can provide unique insights into ways to improve outcomes and to address the complexities of living with IBD.
This draft report analyses and discusses patient reported concerns from a survey exploring Wellbeing living with Inflammatory Bowel Disease (IBD). This report was developed by members of the IBD Patient Public Involvement (PPI) group who have lived experience of either Crohn's disease or colitis.
The report draws together survey responses and the PPI group members' experiences of managing wellbeing living with IBD. The key findings highlight priority areas for future research, such as improving quality of life overall, addressing the confusion around the term 'remission', and improving access to mental health support. The report also outlines a number of interconnected issues across the themes explored.
Currently, the project group is working to refine this report and strengthen its ability to influence clinical-based research, practice, and challenge traditional models of PPI work.
This is an immensely impactful work driven entirely by our patient group. As both clinician and researcher, I (and my whole team) have learned a lot and this has changed my practice. We aim to publish this work as a model of patient public involvement work that is wholly led by our patients.
Share This Page
Help spread awareness about patient-led IBD research by sharing this page with your network.