P220 The CFHealthHub Learning Health System - supporting a community of practice to deliver a normal life expectancy in cystic fibrosis

R.D. Sandler,Steven Antrobus, S. Cameron,Sophie Dawson, T. Daniels, Stephen Farrell,Zhe Hui Hoo,Marlene Hutchings, L.Y. Lai,Pauline Whelan,Martin J Wildman

Journal of Cystic Fibrosis(2023)

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摘要
The main cause of death in CF is progressive loss of respiratory function, due to chronic inflammation and recurrent infection. Preventative inhaled therapy, and more recently CFTR modulators, increase life expectancy. By switching the emphasis of care from rescue treatment to preventative treatment, people with CF can be enabled to live as normal a life as possible and may now have the chance of a normal life expectancy. CFHealthHub is a multi-centre learning health system, using objective nebuliser adherence data to drive person- centre- and national-level improvement. Our objective is to enable people with CF to live as normal a life as possible. Electronically captured, objective nebuliser-usage data is made available to people with CF and their clinical teams (with consent). Each centre is encouraged and facilitated to use these objective data to inform clinical decision making and to identify people with CF who could benefit from personalised adherence support. Clinicians are invited to weekly, online collaborative meetings to share learning and experiences. CFHealthHub is currently active in 15 centres, representing over 50% of adult CF centres in England, with over 1300 people with CF enrolled. Trained clinicians in each centre can deliver a tailored behaviour change intervention, to help people with CF develop habits for treatment-taking. Aside from use in routine care, CFHealthHub data supports research understanding the effect of co-adherence to preventative inhaled therapy for people on CFTR modulators. Other activities include cost-saving medicines supply optimisation and local-level quality improvement work. CFHealthHub (www.cfhealthhub.com) is recognised as the only condition-based full learning health system with national reach in the UK. It brings together a national community of practice, using routine data and clinical experience to address research priorities and inform day-to-day care of people with CF.
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cfhealthhub learning cfhealthhub system,cystic fibrosis,normal life expectancy
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