Patient and Public Involvement in Inflammatory Bowel Disease Research-A Scoping Review

Area of Science:

• Gastroenterology
• Health Services Research
• Patient Engagement

Background:

• Growing interest in patient and public involvement across medical and social care research.
• Documented benefits include user empowerment and reduced clinical trial attrition.
• No prior review has specifically examined patient engagement within inflammatory bowel disease (IBD) research.

Purpose of the Study:

• To systematically review and describe the benefits, challenges, and best practices of patient engagement in IBD research.
• To identify the extent and nature of patient involvement in IBD studies.

Main Methods:

• Systematic literature search of MEDLINE, EMBASE, and Cochrane databases for IBD research involving patients (1946-2023).
• Data extraction on patient involvement in study design, execution, dissemination, and other domains.
• Analysis of engagement levels, formats, reported benefits, challenges, and recommendations.

Main Results:

• 51 studies were included after screening 9,355 articles.
• Patient engagement was most common in study design, improving recruitment and quality-of-life tool development.
• Common challenges included selection bias and recruitment difficulties; authors recommended continuous involvement and cognitive interviewing.

Conclusions:

• Patient engagement is crucial for advancing patient-centered care in IBD research.
• Implementing cognitive interviewing, continuous involvement, and standardized reporting can enhance future patient engagement strategies.