CFHealthHub Digital Learning Health System
Research type
Research Study
Full title
CFHealthHub Data Observatory: A quality improvement project and Trials Within Cohort platform for Cystic Fibrosis
IRAS ID
216782
Contact name
Martin Wildman
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
8 years, 2 months, 23 days
Research summary
Cystic Fibrosis is a long-term illness affecting around 10,000 people in the UK. The lungs of people with Cystic Fibrosis (PwCF) are prone to infections and require daily medication to maintain optimal function. Evidence suggests that average adherence to such medications is only at 30%, therefore, CFHealthHub was designed as an online platform (available via a website and mobile application), to display real-time adherence data from dose-counting nebulisers. This adherence monitoring tool is supported by a behaviour-change toolkit and health professionals facilitating patients to develop supportive habits for taking their nebulised treatments. CFHealthHub is an evidence-based platform implemented in >60% of the adult Cystic Fibrosis centres in the UK, with the infrastructure to support virtual clinic appointments, facilitating clinicians to monitor their patients BMI, FEV1 and adherence, during this prolonged period of reduced interpersonal contact and self-isolation. During the Covid-19 pandemic, adherence to preventative inhaled medications is considered vital for maintaining adequate lung health, reducing exacerbations and, in the event of COVID-19 infection, will likely improve health outcomes. With evidence supporting the utility of CFHealthHub in supporting self-care in CF patients, the research project is continuing to recruit and distribute dose-counting nebulisers during the Covid-19 pandemic, to support as many adults within this critically vulnerable population as possible. Accordingly, the current protocol has been amended to support telephone recruitment during this time. \nIn the anticipation that CFHH local behaviour change leads will likely be under greater time pressure and pulled to other duties, the CFHealthHub central team and resource has been reconfigured to support CF teams nationally, allowing for the provision of uninterrupted patient support throughout the pandemic. Finally, the dynamic nature of the CFHealthHub infrastructure, this allows for the platform to be tweaked and refined to best suit the needs of clinicians and patients using the tool in routine encounters. In the current crisis, the developers have quickly met the challenges associated with reduced clinical appointments to allow for FEV1 and BMI data to be updated by the patient after virtual clinic appointments. Consequently, CFHealthHub offers a comprehensive monitoring tool providing FEV1, BMI and adherence in one place for virtual clinic appointments. \n\n
REC name
London - Brent Research Ethics Committee
REC reference
17/LO/0032
Date of REC Opinion
24 Mar 2017
REC opinion
Further Information Favourable Opinion