Community Involvement in miGut-Health
The ENGAGE-IBD package was created together with patients, families, and healthcare professionals to make sure it truly reflects the everyday challenges of living with IBD.
The process started with surveys across several European countries helped us understand different “engagement profiles.” These profiles showed that people vary a lot in how they cope with stress, food, and disease management. Some feel confident and ready to act, while others struggle with stress-eating, dietary uncertainty, or low motivation.
Building on these insights, in December 2024, we held two co-creation workshops: patient representatives, advocates, and a dietitian worked side by side with researchers to review the first draft of the package. Their message was clear: information on diet, stress, and self-care cannot be treated separately; they are deeply connected in real life. This feedback led us to design a more holistic and integrated resource, combining practical advice with emotional and motivational support.
The next step was an optimization phase. Here, we invited IBD patients, high-risk individuals (such as relatives), and clinicians from across Europe to review the package in detail through structured online interviews. They assessed each section for clarity, usefulness, and relevance. Patients praised the empathetic tone and focus on emotional well-being, while clinicians ensured medical accuracy and suggested areas for improvement.
The final product, the ENGAGE-IBD Toolbox, is a practical and flexible guide. It covers key areas, including understanding IBD, navigating healthcare, tracking symptoms, adhering to treatment, maintaining emotional well-being, balanced eating, decision-making, building support networks, and setting goals. Each section offers easy-to-read content, reflection prompts, and practical tips that individuals can adapt to their own personal journey.
Thanks to this community-driven process, ENGAGE-IBD is more than an information booklet; it is a tool to help people become active partners in their care.
ENGAGE-IBD package
eHealth Apps
We are extending and employing novel eHealth technologies to enable people to get directly involved in their health and self-care. Three cutting-edge eHealth apps – MyIBDCoach, MyFoodRepo, and PRO-App – make it easy for people to monitor their diet, exercise, and mental health habits. With this information, we are developing personalised treatment measures for those affected by IBD that specifically address their healthcare needs.
Open Labs
By organising and realising a series of interactive events, miGut-Health is sensitising the general population and healthcare professionals about the value of health engagement in health promotion, disease prevention, and disease management.