Patients Know Best (PKB) is an online platform that is empowering more than 4,000 patients across Surrey and Sussex Healthcare NHS Trust to play an active role in managing their inflammatory bowel disease (IBD) as well as offering them greater access to clinical expertise and innovative treatments.

Supported by the Kent, Surrey and Sussex Academic Health Science Network (KSS AHSN), PKB is being used by patients to record their symptoms and communicate with their clinical team remotely, accelerating timely access to advice, clinical reviews for flare-ups, and escalation to disease-modifying therapy where appropriate. It also offers reassurance to those who are stable without the need for a face-to-face review.

​The benefits of this patient-centred approach have been significant. As well as reducing the number of inpatient admissions and outpatient attendances, the time to access specialist care at the onset of a flare-up has reduced from 6 weeks to 1 week. At the start of the study 60% of respondents reported that their IBD had been well controlled in the preceding 2 weeks, with this figure rising to 71% after 4 months of PKB usage. Importantly, 68% said the service had a positive impact on their IBD, and 77% said it helped them feel more confident in managing their own health.