OTU-031 My–IBD portal: progress and impact update

Abstract

Introduction Patients with Inflammatory Bowel Disease (IBD) often struggle with access to prompt advice regarding and place a heavy reliance on overstretched services. We have a track record in guided self-management of IBD so explored whether this could be built into a novel patient-centred portal with direct on line access to a fully personalised health record, integrating individualised plans of care and disease monitoring tools. Methods In a unique collaboration with local patients, the patient charity Crohn’s and Colitis UK, health care and IT teams, we developed, implemented and evaluated a web based portal at Salford Royal. At the outset, a user group of patients was established and their views and needs were central to each step of the development, refinement and evaluation of the portal. From this group it was clear that there was a particular demand by IBD patients to have access to their health records and reliable information. Results We have built and refined the ‘MY IBD’ portal, which is fully integrated with the electronic patient record and delivers: Access to personalised information: diagnosis, visual aids and links to CCUK information resources Immediate access to blood results, investigation results, clinic letters Disease activity assessment tools A personalised plan of care available online for the patient Improved communication with the IBD team: messaging facility and trigger emails when disease activity scores are high. 720 patients are now using the portal. Overall usability was scored as excellent, showing patients were helped with decision-making. Improvements were seen in perceived support (p=0.06) compared to non-users with a trend to improved disease related knowledge (p=0.14). An average of clinic 2.9 attendances per year (2014–15) reduced to 0.6 attendances for portal self-management users (2016–2017) releasing over 500 clinic appointments. Satisfaction with self-management remains high with 98% of patients rating the process as good/excellent. User group sessions have captured value to patients. They expressed it had ‘completely changed my care’, ‘having up to date information about your condition leads to less stress and better health’ and ‘puts patients back in control of their illness’. The portal has also been refined for integration with the IBD registry. Conclusions Patient experience and service have improved. Portal patients are more in control, with greater independence to self-manage through better understanding of their condition. Other Trusts are now seeking to adopt the portal and we welcome enquiries to establish it in other NHS sites. Acknowledgments funded by CCUK, ‘Living with IBD’.