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Digital learning health system transforms care for patients with Cystic Fibrosis across England

CFHealthHub is a digital learning health system developed by researchers at Sheffield Teaching Hospitals NHS Foundation Trust to support a community of practice, helping patients with Cystic Fibrosis monitor their condition and reduce the need for hospital admission.

Now used in 60% of adult Cystic Fibrosis centres in England, the platform has helped over 1,400 patients stay fit and healthy by creating habits and a behaviour of self-care.

Cystic Fibrosis (CF) is an inherited disease that causes damage to the lungs and digestive system and affects over 10,000 people across the UK. Many patients with CF are required to take a strict daily regime of inhaled medications, using a nebuliser, to help prevent lung damage. When routines change this can often create barriers for patients taking their treatment and can result in poor health outcomes and in some cases, emergency hospital admission.

CFHealthHub allows patients to monitor their health from home using real-time data collected from their nebuliser and transferred to an app on their phone. The data includes information such as how much medication they have successfully taken each day, which can help them to identify the reason for any changes or decline in their condition. Patients can also share this data with their clinical team who can use it to provide strategies to manage their treatment.

Dr Martin Wildman, Consultant in Respiratory Medicine and Adult Cystic Fibrosis at Sheffield Teaching Hospitals NHS Foundation Trust and lead researcher for CF Health Hub, said:

“Taking medicine day in and day out can be a difficult habit to maintain and so as clinicians, we want to reduce the burden of self-care on our patients and make it as easy as possible for them to stay fit and healthy. The CFHealthHub learning health system was created to help provide patients with the knowledge and skills to form habits and build their confidence in managing a long-term condition like Cystic Fibrosis.”

CFHealthHub is the product of rigorous evidence-based research taken place within 19 adult Cystic Fibrosis centres across the UK and funded by the National Institute for Health Research (NIHR). For more information about CFHealthHub please visit https://www.cfhealthhub.com/ or watch more here: https://youtu.be/PEpbC-tU_Ro.