P490 A pilot study of the electronic patient portal “Patient Knows Best” for monitoring biologic therapy in inflammatory bowel disease

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Background: The number of inflammatory bowel disease (IBD) patients on biologics in the UK is increasing [1]. This has contributed to delays in delivering treatment compounded by the expansion of available drugs [2]. e-Health applications such as “Patients Know Best” (PKB), have been shown to improve efficiency of patient management in stable IBD with significant financial benefits [3]. In this pilot study we aimed to explore the uptake, acceptability and outcome of PKB in the management of IBD patients starting biologics.

Methods: PKB is a personal online healthcare record developed to facilitate self-management. IBD patients prescribed biologics were invited to register and received online training. We measured the number of new starters, PKB registrants, demographic data, time intervals to treatment and the nature of online activity. Six months after enrolment all patients using the application received a “patient questionnaire” to capture engagement and satisfaction.

Results: 33 patients (out of 40 newly started on biologics) with mean [SD] age of 44.3 [13.3] years were included in the study. The mean time interval from decision to treat to the first drug administration was 82.7 days [44.0]. Ten patients raised at least one issue on the platform and in total 45 new issues were raised. Most of issues were relevant to active disease (18/45) adverse events of treatments (6/45) and the funding application process (5/45). 39 of 45 issues were resolved online. 16 patients answered the patient experience questionnaire and 11 of them found it at least somewhat helpful and more training was requested.

Conclusions: There were significant delays between time of treatment decision and drug administration. The use of PKB did not accelerate the process. However, a majority of patients engaged with the use of the platform, several issues were raised and most were resolved electronically. Regular refreshing training and individually tailored treatment plans for patients starting biologics may enhance uptake and improve outcomes for long-term monitoring.


[1] Royal College of Physicians (UK), (2016), National clinical audit of biological therapies. UK inflammatory bowel disease (IBD) audit - Annual report September 2016.

[2] Lee M, (2016), National IBD audit

[3] Pedersen N, (2015), EHealth: self-management in inflammatory bowel disease and in irritable bowel syndrome using novel constant-care web applications. EHealth by constant-care in IBD and IBS., Dan Med J

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