CFHealthHub case study
A digital self-care and behaviour change platform, extensively co-designed with patients and embedded in over 70% of adult cystic fibrosis (CF) units in the UK.
The challenge
Around £30 million is spent annually on inhaled therapy for CF patients, but some studies have suggested that patients only adhere to 36% of their therapy as directed by their doctor on average.
Most of the cost of poor adherence to the healthcare system is a result of unscheduled emergency care and hospital admissions, which in turn is distressing for people with CF and their families.
Until recently, there was no way for people with CF and their clinicians to see how and when people take their inhaled medications. This made it very difficult for the health services to help people with CF to adhere better to their treatments.
The research
CFHealthHub was originally funded by the NIHR with the aim of developing and evaluating an intervention to support adherence to CF treatment in adult patients (NIHR: RP-PG-1212-20015).
Subsequent funding from NHS England and other sources has come to a total investment of around £10 million since 2015.
The programme has involved:
- co-creating a digital health solution to help patients adhere to treatment, in partnership with patients,researchers, software engineers, clinicians, physiotherapists, behaviour change psychologists, statisticians and many others;
- a two-armed, parallel-group, open-labelled randomised controlled trial (RCT) at 19 CF centres to test the effectiveness of the intervention;
- a health economics evaluation of streamlined medicine delivery and the potential cost savings to the NHS;
- development of an NHS Digital-approved national indicator for CF;
- a dashboard for each centre using CFHealthHub showing their results against national indicators to enable ongoing quality improvement;
- a CF-specific mobile app to support people with CF with their dietary requirements.
Digital Health Software and Platforms’ contribution
We worked closely with the multidisciplinary research team, including patient and public involvement group members, throughout all stages of the project to develop a digital platform for patients, researchers and clinicians.
Patient-facing platform
The Digital Health Software and Platforms team developed the CFHealthHub digital platform, including a mobile app and website for people with CF to visualise their nebuliser treatments and provide behaviour change support.
This involved integrating with a medical device developed by an industry partner. CFHealthHub aims to be device-agnostic and to support multiple kinds of medical devices used in CF care, e.g. nebulisers and spirometers.
Researcher platform
We also built a secure platform for researchers to view the data and capture data analytics to support the RCT.
Clinician website
For clinicians, we developed a website to make adherence data visible and to support the delivery of the behaviour change intervention.
Our key people
- Pauline Whelan – co-investigator and technical lead
- Steven Antrobus – senior technical project management
The impact
CFHealthHub has become a system-wide digital community of practice and is a learning health system that provides evidence for personalised care and medicines optimisation. It is now in widespread use at over 70% of all CF centres across the UK.
Shorter time to clinical benefit
Over 25% (and growing) of UK adults with CF have granted their consent to testing digital and behavioural interventions at speed, allowing us to implement research breakthroughs into clinical practice by sharing learning through an established community of practice.
Cost savings
The platform enables the NHS to sustainably shift long-term CF care from expensive, hospital-based reactive care to affordable community-based prevention.
This reduces waste across the whole system and maximises the UK’s international influence in multi-modality, multi-morbid conditions critical to value-based healthcare.
Global replication interest
CFHealthHub is generating interest around the world, especially from the CF Foundation in the US, which funds research leading to nearly every CF drug.
CFHealthHub also offers a flexible and comprehensive digital behaviour change platform that can be adapted and refined for other long-term health conditions.
Further reading
- Hind, D, Drabble, S J, Arden, M A et al. Supporting medication adherence for adults with cystic fibrosis: a randomised feasibility study. BMC Pulm Med 19, 77 (2019).
- Tappenden P, Sadler S, Wildman M. An Early Health Economic Analysis of the Potential Cost Effectiveness of an Adherence Intervention to Improve Outcomes for Patients with Cystic Fibrosis. Pharmacoeconomics. 2017;35:647–59.
- Arden M A, Drabble S J, O’Cathain A, Hutchings M, Wildman M. 1 ACtiF study: understanding adherence to nebuliser treatment in adults with cystic fibrosis using the theoretical domains framework. J Cyst Fibros. 2016;15:S26.
Contact us
If you would like to discuss how the Digital Health Software team can help with your project, please get in touch by contacting us.