Pioneering cystic fibrosis project at Cambridgeshire hospital delivers major benefits to patients

Cystic fibrosis is a genetic condition that weakens the lungs and affects the digestive system. Historically, a visit to the hospital had been the only way for a clinical team to monitor patients’ health and, even before Covid-19, patients would have to wear masks when in hospital to protect themselves from picking up infections which would be far more damaging for them than people without CF.

That was one of the reasons behind the launch of a first-of-its-kind study at Royal Papworth Hospital, called Project Breathe, in February 2019 which allowed people with CF to monitor their health at home.

Patients are allocated devices – such as a FitBit and electronic scales - that measure key indicators including lung function, blood oxygen levels, weight, sleep and temperature, and then upload the results via a smartphone.

That data is then uploaded to an app on their phone and sent to the hospital, enabling clinicians to view each individual’s data at virtual appointments.

By tracking their own health patients can also intervene earlier and potentially head-off serious, lung-damaging infections.

“People with cystic fibrosis spend a lot of time in hospital, both as inpatients and outpatients. We know that a lot of those outpatient appointments can be avoided with the right technology,” said Rachel Godfrey, cystic fibrosis research sister.

“A patient’s nearest CF centre can be some distance away, meaning a full day of travel and tests, leading to fatigue and therefore poor performances in the tests we do and, subsequently, sometimes misleading information about their health.

“This creates a Catch-22 situation; people with CF can sometimes feel that their clinical results do not reflect how they are truly feeling and even begin to get pre-appointment anxiety, negatively impacting their scores even further.

“Multiple hospital visits can also have financial and time implications - patients can attend clinic but are completely stable and have unnecessarily taken a day off work, school or annual leave and have spent money on petrol.

“Through Project Breathe we not only monitor our patients’ key indicators each day and therefore have more reliable data about their health, we can cancel some appointments because we know the patient is okay and safer at home. This saves time and money for both the patient and the hospital and improves patient care.”

The study is also reducing the number of days that cystic fibrosis patients spend in hospital for intravenous antibiotic treatment.

Once participants have home monitoring equipment they are given the option to consent to their data being analysed by machine learning experts at the University of Cambridge and Microsoft Research. The data is stored in the Cloud and develops early warning algorithms, using a predictive model to determine when patients are becoming sick long before they begin to feel unwell.

“As well as avoiding the usual clinic attendances early results show that the model can identify a decline in a patient’s condition an average of 11 days earlier than antibiotics would typically be started,” explained Professor Andres Floto, Professor of respiratory biology at the University of Cambridge and an honorary consultant physician at Royal Papworth Hospital.

“Virtual clinics and home monitoring has surged in use across the NHS during the coronavirus pandemic. Project Breathe has been ahead of the curve in that respect.

“If we can also intervene earlier we should be able to protect patients – in this case their lungs - from long-term, ongoing damage.”

The pioneering work in Cambridge has now led to Project Breathe being expanded significantly across the UK and internationally.

Four hospitals in the UK now offer Project Breathe to people with cystic fibrosis, with Cardiff, Glasgow and Edinburgh joining Royal Papworth Hospital. A multi-site centre in Canada is also currently in the process of recruiting to the project.