Why is it important?
In order to meet the diverse needs of people with IBD, a holistic, patient-centred approach should be at the heart of all aspects of IBD care. This includes how IBD services are developed and how patient data is stored.
People with IBD are experts in the experience of living with their conditions. Giving people living with IBD a voice and active role in the planning, development, delivery and review of their healthcare services will support and empower them to live well with their condition. It will create improved services and better patient outcomes. That’s why IBD UK developed the IBD Patient Survey to understand the national and local picture within IBD care – and target the right improvements. With 82% of adult patients reporting they didn’t have opportunities to feedback on their care in the past 12 months, creating more opportunities for patient voice to be involved in service development is a key recommendation from the 2024 IBD UK National Report.
We also know that data collection is important to high-quality, patient-centred care. Collecting data at the point of contact with patients, through the use of an electronic clinical management system, removes the need for patients to repeat their relevant details and medical history. In turn, this enables greater continuity of care from a safe and more responsive service, as well as the use of virtual clinics and monitoring. For clinicians, it means accessing shared, current information at the point of care to inform treatment decisions.