Patient-public involvement (PPI)-led qualitative analysis of >400 Inflammatory Bowel Disease patient responses in United Kingdom: An independent patient-led review to provide insights to improve care and research

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.musiscstudy.uk ) with over 1,375 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.