Scaling up Real Time Cystic Fibrosis Care

Cystic Fibrosis (CF) is a long-term condition which affects every level of society and which is caused by a genetic defect carried by 1 in 25 of the population. Self-care is important in all long-term conditions and is particularly challenging in multi-morbid conditions requiring multi-modality treatment such as CF. As a care pathway, service is primarily delivered by a relatively small number of units across the UK with a UK CF registry available of nearly all the people diagnosed with CF.

Case study: CFHH working for Sally

Sally was finding it difficult to keep track of her nebuliser intake. She often couldn’t remember what she had taken on a given day and this meant that she sometimes missed treatment. Sally was provided with access to CFHH which meant that she automatically tracked the use of her nebuliser. The data collected was stored on a secure system where analytics could be applied to the data.

A dashboard for clinicians and an app for patients were also created to present the analysed data in a colour coded system. Having real time nebuliser data available on her smartphone provided timely feedback on a co-produced platform allowing Sally to clearly see the progress she was making in adhering to her new routine and this made her feel more confident and reduced her stress levels. Sally also noticed a change when discussing her treatment with the CF team. The data provided unbiased evidence of Sally’s treatment adherence, allowing for focused discussions on barriers to adherence and a more personalised approach to treatments.

Patients using the CF Health Hub (CFHH) platform owned their own data and are invited to share anonymised data at centre and national level. Using the Trials within Cohorts (TWICS) online platform, patients also consent to be controls in future trials allowing behavioural interventions to be tested. This digital consent process speeds up the potential for future randomised controlled trials (RCTs). CFHH implemented an online system that automatically records medication adherence and self-care data from patients across the system.

CFHH worked closely with the CHC Hub team and benefited from CHC’s expertise in digital learning health systems. This enabled the scale up of the service funded by a £2.4m NIHR programme grant*. This project also leveraged around £5m from NHS England in a 6-year programme (CQUIN) to achieve implementation across 60% of adult CF units within 3 months of completing the research trial.

Patients using the CF Health Hub (CFHH) platform owned their own data and are invited to share anonymised data at centre and national level. Using the Trials within Cohorts (TWICS) online platform, patients also consent to be controls in future trials allowing behavioural interventions to be tested. This digital consent process speeds up the potential for future randomised controlled trials (RCTs). CFHH implemented an online system that automatically records medication adherence and self-care data from patients across the system.

CFHH worked closely with the CHC Hub team and benefited from CHC’s expertise in digital learning health systems. This enabled the scale up of the service funded by a £2.4m NIHR programme grant*. This project also leveraged around £5m from NHS England in a 6-year programme (CQUIN) to achieve implementation across 60% of adult CF units within 3 months of completing the research trial.

* This work was funded by the National Institute of Health Research Programme grants for Applied Research [Grant Number RP/PG/1212/20015]. The views expressed regarding CFHH are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.