Lauren Laydon Parkin and IBD Team

The ‘personal disease profiles’ enable the collection of valuable medical and symptom data for IBD patients on biologics now that the Royal College of Physicians National IBD Biologics Audit is closed. The collection of this data in one accessible place has led to patient, staff and financial benefits.

The Royal College of Physicians National IBD Biologics Audit had collected data around prescribing, effectiveness, tolerability and patient views on quality of life. Following its transition to the UK IBD registry in March 2017, the team identified the value that having their own registry would have and came up with the idea of setting up ‘personal disease profiles’ (PDPs) for each patient with IBD on a biologic.

The PDPs combine medical information and symptom data for patients with IBD on a biologic. They are nurse-led and cost nothing to set up. Since their inception they have enabled the continued collection of valuable information and aided the team in keeping track of their patients on biologics.

After introduction of the PDPs, the average disease activity score for patients has been reduced from 4, to 3.2. As well as patient benefit, they have also shown value to staff and the Trust itself; helping the smooth transition from originator products to biosimilars and supporting cost calculations, which have resulted in considerable savings from switching. The PDPs continue to evolve as the team identify additional information to capture that would be useful to support improved patient care.