ENGAGE-IBD Personalised Health Engagement Guide Published: A New Resource to Support People Living With IBD

We are pleased to announce the publication of the ENGAGE-IBD Personalised Health Engagement Guide, developed within the miGut-Health project, together with patients, clinicians, scientists, and engagement experts. The guide provides accessible information about Crohn’s disease and Ulcerative Colitis, explains how symptoms may fluctuate, and highlights the importance of early treatment, regular monitoring, and informed decision-making. It introduces the ENGAGE-IBD framework, which supports individuals in understanding their condition, navigating healthcare, recognising symptom patterns, and staying engaged with treatment.

The guide also addresses emotional well-being, personalised nutrition, stress management, and the value of supportive networks. It offers practical advice, reflection prompts, and flexible tools that people can adapt to daily life and long-term disease management.

Its development followed a collaborative, community-driven process. Surveys across several European countries helped identify different “engagement profiles,” revealing how people vary in stress responses, motivation, confidence, and dietary challenges. These insights informed two co-creation workshops held in December 2024, where patient representatives, advocates, a dietitian, and researchers reviewed the initial draft and highlighted the need for an integrated approach to diet, stress, and self-care. An optimisation phase with IBD patients, high-risk individuals, and clinicians from across Europe provided further feedback on clarity, usefulness, and accuracy.

The team behind the guide includes researchers from Università Cattolica del Sacro Cuore & EngageMinds HUB and the International Federation of Crohn’s and Ulcerative Colitis Associations, and partners across the miGut-Health consortium. Their collective expertise and commitment to participatory research ensured that the final resource reflects real experiences and practical needs.

The guide was first presented to people living with IBD during the Health-Engagement Open Lab in Berlin, an interactive event featuring contributions from Guendalina Graffigna, Dilara Usta, Konstantinos Gerasimidis, Salvo Leone and Maria Stella De Rochis. Together with participants, the speakers explored what it means to live well with IBD, discussing lifestyle, diet, stress, daily challenges, and insights emerging from the project. During the workshop, we also gathered direct feedback from participants, which is a valuable input that will help us continue refining and shaping the guide to better meet the needs of the IBD community.

The full Guide is available for download at the miGut - Health website.