A learning health system describes a team, provider or group of providers who develop learning from delivering routine health care in order to drive learning and improvement1Hardie T et al.Developing learning health systems in the UK: Priorities for action. The Health Foundation, 2022(https://doi.org/10.37829/HF-2022-I06)Crossref Google Scholar. CFHealthHub (www.cfhealthhub.com) is a learning health system designed to optimise CF care using quality improvement, digital data and tailored behaviour change interventions to optimise outcomes for people with CF, support treatment adherence and to deliver low-burden adherence research. A key aspect of CFHealthHub is a community of practice of CFHealthHub-trained clinicians at each of the 15 CFHealthHub CF centres delivering both clinical and research activities. To describe the feedback CFHealthHub-trained clinicians provided on the value of the community of practice. The CFHealthHub community of practice meet for an hour weekly, sharing knowledge and learning. One meeting focused on understanding clinicians' perspectives of the value of these meetings. A virtual whiteboard with open questions, followed by group discussion, identified ideas and themes. Themes of feedback for the questions were: Tabled 1QuestionResponses/ThemesWhat do you find useful about the CoP meetings?Maintains motivation, community, sharing learning, staying informed.What could be improved?More quality improvement sharing and training, more centre-led meetings, more sub-projects, themed weeks.What to cover in future meetings?Post-modulator challenges and changes, CFHealthHub-clinicians' roles in other centres, behaviour change case studies, strategic updates, journal club, medicines optimisation and sustainability.Other thoughts and suggestions.Using effective meeting skills with roles is helpful, record meetings for non-attendees, circulate slides/resources after meetings, thanks for the enthusiasm, approachability and encouragement. Open table in a new tab Clinicians valued weekly community of practice meetings. The timetable for future meetings will include topics suggested in the feedback, such as journal club and encouraging different centres to share their specific experiences, challenges and solutions. The community of practice is a key aspect of delivering both the clinical and research functions of CFHealthHub and provides an exemplar for other multi-centre clinical and research programmes.

We previously compared CF medicine supply against use and found potential waste of mean £822/patient/year (95% CI £587–1057) from unused inhaled medications.1 We now use objective adherence data routinely captured in the CFHealthHub (CFHH) digital learning health system to match medicines supply to actual use, in order to minimise excess supply and reduce preventable waste. To determine the savings from this medicines optimisation intervention. This is a multi-centre before & after comparison following an intervention from Jul '21 onwards to match medicines supply to actual use. CFHH participants with objective adherence <50% were identified and contacted by CFHH-trained clinicians at each centre. Clinicians elicited information regarding the amount and condition of medicines stock; then adjusted subsequent delivery according to the amount of usable stock and rate of actual nebuliser use. Prior to the next delivery, participants were recontacted for a stock-check. The intervention is on-going. Data for participants with complete 1-year post-intervention data in Dec '22 were analysed. The cost of excess medicines 1-year pre-intervention and during intervention was calculated as whole excess box(es) supplied after accounting for the discrepancy between objective adherence and medication possession ratio (MPR) with 20% contingency, as previously described.1Bevan A et al.J Cyst Fibros. 2022; 21: 893-897Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar Thus far, 37 participants (18 males, 48.6%; median age 31.7 years, IQR 24.7–38.5 years) from two centres (Sheffield & Nottingham) have complete data. Total excess costs were £48,028.72 pre-intervention vs £18,979.21 during intervention, i.e. mean savings of £785/patient/year. Adherence remained relatively stable (mean 45% pre-intervention vs 39% during intervention). The medicines optimisation programme within CFHH did not adversely affect adherence and has the potential to generate substantial cost-savings.

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.

Individual CF centres have few people not prescribed CFTR modulators (CFTRm). The CFHealthHub Learning Health System includes 15 UK CF centres and approximately 1400 people with CF, of which over 100 are not prescribed CFTRm. This allows collaborative study of the James Lind research priority question "What options are available for those not able to take current CFTR modulators?"1. Preventative inhaled therapies are effective2 but difficult to adhere to. Could optimising the use of inhaled therapy be an option for those not able to take CFTRm? To describe patterns of inhaled therapy use for the non-CFTRm population and for those prescribed CFTRm, within CFHealthHub. Real-time electronic data capture from data-logging nebulisers are collected as part of the CFHealthHub and National Efficacy-Effectiveness CFTR Modulator Optimisation (NEEMO) research programmes. Routinely collected clinical and inhalation data were analysed, for the six months before and six months after 21st August 2020 (UK commissioning of Elexacaftor/Tezacaftor/Ivacaftor[ETI]), to describe patterns of inhaled therapy use. In this preliminary analysis, data were available for 822 participants, with 753 in the CFTRm group and 69 in the non-CFTRm group. In the CFTRm group 356 (47.3%) were male with mean(SD) age 31.2years(10.1), while in the non-CFTRm group 35 (50.7%) were male with mean(SD) age 31.5years(13.2). There was a higher use of inhaled therapies in the CFTRm group before and after UK commissioning of ETI. Following ETI commissioning, inhaled therapy use dropped in the CFTRm group while use rose in the non-CFTRm group. Tabled 1Preventative inhaled therapy use per week (mean number of inhalations)Pre 6 months, mean (SD)Post 6 months, mean (SD)CFTR modulator group11.5 (11.6)10.4 (11.3)Non-CFTR modulator group7.6 (7.8)8.6 (8.5) Open table in a new tab Patterns of preventative inhaled therapy use differed between those prescribed CFTRm and those not prescribed CFTRm. CFHealthHub provides a unique opportunity to pay attention to optimising treatment for people who are not able to take current CFTR modulators.

How often do people with CF tell you that they struggle to find time in the day to do their nebuliser treatments? The time burden of nebuliser treatments is a known barrier to adherence. CFHealthHub Learning Health System provides real-time nebuliser usage data from nebuliser devices capable of electronic data capture. CFHealthHub is available in 15 adult CF centres across England. We aimed to identify people with prolonged nebuliser durations and proactively explore and address reasons for this. We then assessed the impact of these consultations and resulting actions on the time spent each day taking nebuliser treatments and adherence.