The CFHealthHub digital learning health system creates a community of improvement in which Cystic Fibrosis (CF) teams work together to discover how to provide the highest possible quality of care. The collaborative aims to provide a learning community to enable people with CF to master CF by building habits of self-care, and clinical teams to change to support that self-care. Clinical teams find it easy to respond to crisis admissions that require rescue, but CF is beaten in the days, weeks and months when people with CF are self-managing in the community. CFHealthHub is a digital learning health system that allows people with CF to share data about self-management with their clinical teams. It is hoped that this sharing will allow people with CF to help clinicians learn how best to support long-term self-care.
The CFHealthHub improvement collaborative is part of a wider research programme funded by the NIHR (National Institute for Health Research). Programme grants for applied research to 'develop and evaluate an intervention to support adherence to treatment in adults with CF'. This programme will deliver a comprehensive behaviour change intervention for CF patients and a legacy of service transformation, and CF research for CF professionals and academics. The diagram below shows an overview of the programme.
As demontrated in the 'legacy for transformation' illustration, the CFHealthHub programme commenced in 2016, initially working with three specialist CF centres in the UK:
- Sheffield Teaching Hospitals Adult CF Centre
- University Hospital Southampton CF Centre
- Nottingham University Hospitals CF Centre
The collaborative has since expanded to include a total of 17 adult CF centres. MCA training has been delivered to sites, with more than 150 CF staff members from around the UK attending. Please refer to diagram below for information on the national reach.
CFHealthHub Newsletters
Resources
CFHealthHub Quality Improvement One Page Book
CFHealthHub Participant Information Sheet
CFHealthHub Programme Overview Diagram
Useful Contacts
Sophie Dawson, National CFHealthHub Quality Improvement Programme Manager
Sophie joined the CFHealthHub programme in September 2017 as Local Lead for CFHealthHub at Nottingham University Hospitals NHS Trust. Her role has been to facilitate a quality improvement programme of work in the Wolfson CF Centre to embed CFHealthHub into clinical practice. Sophie has supported the CF team in Nottingham to undertake a number of quality improvement cycles, including: 1. Opening CFHealthHub in pre-clinic meetings; 2. Improving CF clinic flow and efficiency; 3. Opening CFHealthHub in a weekly team meeting; 4. Improving the accuracy of nebuliser prescriptions in the CF Centre; and 5. Improving patient access to the CF outpatient service. Sophie then joined the central CFHealthHub team in October 2019 to lead on quality improvement across the digital learning health system. Sophie has a background in health psychology and is currently undertaking a Professional Doctorate in Health Psychology at Staffordshire University alongside her roles on the programme.