P161 Implementation of Outcome Measurement – Case Finnish IBD register

Mustonen, A.(1);Asikainen, S.(2);Hermansson, L.L.(3);Jussila , A.(4);

(1)BCB Medical Ltd, Life Science, Turku, Finland;(2)BCB Medical Ltd, Life Science, Espoo, Finland;(3)BCB Medical Ltd, Life Science, Luzern, Switzerland;(4)Tampere University Hospital, Department of Gastroenterology and Alimentary Tract Surgery, Tampere, Finland;


Inflammatory bowel diseases (IBD) are becoming increasingly common. In Finland, during 2020, in total of 54 000 patients were diagnosed with IBD, and over 2000 new diagnoses are made every year. The Finnish university hospitals in collaboration with BCB Medical Ltd have built disease-specific registers to support and monitor the quality and effectiveness of health care. The IBD register (IBDR) collects data on the effectiveness of IBD treatments and their follow-up, where e.g. disease severity, treatment and outcomes are profoundly monitored. As combination, IBDR, MyHealth service, and IBD Symptom Diary enables patients’ health, functional status, experience and QoL monitoring to reach the health care goals. The service supports patient treatment pathway and makes designing more personalized treatments for IBD possible.


The IBDR is a web-based system integrated with electronic health record (EHR) systems, through which patient data is captured. Nationally convergent register allows for peer review of treatment outcomes. To complement registers’ clinical data, PROMs are collected with online MyHealth service to enable automatic, recurring data collection directly from the patient. The first questionnaire is activated 14 days before the visit, whereas new questionnaire is sent to the patient two months after visit, and then at time points according to the disease activity index calculated from the questionnaire. The disease activity is reflecting the severity of the IBD symptoms[1]. Captured measures are immediately available for clinician review.


MyHealth for IBD is actively used in four Finnish university hospitals and two central hospitals with some inter-regional variation. By November 2021, the questionnaires were answered 31 506 times since the beginning of the implementation in 2019. The response rate is yearly increasing (Figure 1). Distribution of disease activity index among IBD patients in Tampere University Hospital is shown in Figure 2.


IBDR enables the evaluation and comparison of patient care quality, which is not accessible through EHR systems alone. Our electronic data collection model brings out the patients’ voice and saves resources since cyclic questionnaires are automatically send to patients, and answers are immediately reached by clinician. In future, international comparison and monitoring of treatment outcomes will be emphasized. As MyHealth deployment proceeds across hospitals, the availability of the patient reported outcomes data will increase. International research and peer development will continue to be an essential part of our activities.

[1] Puolanne A-M et al. Dig Dis Sci (2017) 62:3123–3130.