P1050 Development of a patient-centred dashboard for routine IBD monitoring
Authors: Fierens L , Hedin C R , Novacek G , Julsgaard M , Gross E , Arijs I , Sander C , Vakouftsi V R , Koenders J , Vanhaverbeke M , Stamm T , Ferrante M 
Published: January 2025

Background

A core outcome set (COS) for patients with inflammatory bowel disease (IBD) was recently developed through a multi-stakeholder consensus in the Health Outcomes Observatory (H2O) project.(1) Recognizing the importance of data visualisation in enhancing disease management, the H2O website now provides a population-level dashboard to track quality and key performance indicators.(2) Patient-level dashboards are designed to support both healthcare providers (HCPs) and patients by facilitating individual health monitoring, encouraging patient-clinician dialogue, and supporting shared decision-making. This work aimed to develop a patient-level dashboard for HCPs to routinely monitor IBD patients, visualising data collected in the H2O IBD COS.

Methods

In November 2023, a core team comprising three public and four private sector researchers, was formed to coordinate the project. To guide discussions with target users, the lead academic centre developed a static dashboard template including all IBD COS variables. On- and offline feedback was gathered from target users and incorporated iteratively to refine the dashboard until consensus was achieved. Six patients from six countries reviewed the template, identifying unclear or missing outcomes essential for discussion during an outpatient clinic.

Results

A total of 15 HCPs and 7 academic researchers from 8 countries reviewed dashboard templates, providing feedback over two improvement rounds. In March 2024, consensus among target users was reached on the third version of the static dashboard (Figure). Key improvements included integrating medication tracking with graphical displays of biomarkers and patient-reported outcomes (PROs) related to disease activity, adding pop-up information on hover, and introducing graph customisation options. All consulted patients approved the final dashboard template without requiring additional adjustments.

Conclusion

We developed a patient-level dashboard for HCPs to support routine monitoring of IBD patients. The static template offers flexibility, allowing implementation teams to add customized information. The template is currently being transformed into a dynamic version for integration into the electronic health records of four academic hospitals. Additionally, the patient-level dashboard is currently being adjusted in close collaboration with patients to integrate into existing PRO collection tools, enabling patients to actively track their health progress themselves, and ensuring that patients and HCPs speak a common language to drive shared decision making.

References

1)Fierens L, Carney N, Novacek G, van der Woude CJ, Siegmund B, Casellas F, Borruel N, Huberts AS, Sonnenberg E, Gerold N, Primas C, Hedin CRH, Stamm T, Julsgaard M, Fiorino G, Radice S, Zini MLL, Gross E, Sander C, Arijs I, Vakouftsi VR, Koltai T, Health Outcomes Observatory H O Patient Advisory Board For Inflammatory Bowel Diseases, Health Outcomes Observatory H O Steering Committee, Charlafti I, Ferrante M. A Core Outcome Set for Inflammatory Bowel Diseases: Development and Recommendations for Implementation in Clinical Practice Through an International Multi-stakeholder Consensus Process. J Crohns Colitis. 2024 Oct 15;18(10):1583-1595. doi: 10.1093/ecco-jcc/jjad195.

2)https://health-outcomes-observatory.eu/h2o-insights-center/