Our patient group's research into IBD wellbeing
A novel approach where patients define what matters most in IBD care
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Abstract:
Brief overview of the patient-led paper (5 min)
Full Paper:
Complete reading of the patient-led analysis (42 min)
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Abstract
Background
This paper investigates a patient-led approach to research on wellbeing in individuals with Inflammatory Bowel Disease (IBD). Traditionally, Public and Patient Involvement (PPI) groups have contributed to the design of clinical research but less often to the analysis and reporting of findings. This study is wholly led by a patient group with no direct input from clinicians, thus presenting an entirely novel and unique patient-centric view.
Methods
This report draws on data from a Wellbeing Survey led by the Edinburgh IBD Science team as part of the MUSIC IBD cohort study (www.musicstudy.uk) with over 1375 IBD respondents over two time periods in 2023 from United Kingdom. The PPI group utilised high-level topic analysis and their own lived experience of IBD to explore the 415 free-text survey responses. Regular discussions allowed the team to reflect on patient narratives and generate findings collaboratively. PPI members contributed to both the structure and content of the final write-up, utilising their diverse backgrounds and skillsets.
Results
The analysis provided 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 emphasise the necessity for improved support, both within and beyond healthcare settings.
Conclusion
This 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 integrating patient perspectives, this study advocates for a patient-dominant approach to research and care, which can improve outcomes and support ways to address the complexities of living with IBD. The model highlights challenges and benefits of this approach, serving as a foundational template for future patient-led collaborations, in addition to the immediate impact of patients' wellbeing from shared experiences, to educating clinicians and people without IBD about the impact of IBD on patients' lives.
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.
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