Nearly two-third of adults with CF are in full-time jobs, school or university, yet they will spend weeks, even months, of their lives in hospital and attending clinic. This is valuable time that could otherwise be spent with their friends or families, working or pursuing their education; however, this is the only way for them and their clinical team to monitor their health. A collaborative study, supported by the £2.5 million investment awarded to the Trust, will allow for the development of new technologies to reduce this burden and allow people with CF to live a normal life unlimited by their condition.
The study, known as ‘Project Breathe’, is being funded by a three-year grant from the US-based Cystic Fibrosis Foundation and builds on over five years of research in this area, developing further Professor Andres Floto’s home monitoring concept ‘SmartCare CF’. The hope is to evaluate whether improved home monitoring technology could reduce the number of clinic visits for people with cystic fibrosis and ultimately identify exacerbation's (flare-ups in lung health) at an earlier stage.
"I am in control instead of cystic fibrosis controlling me"
Sammie Read, age 39 from Ipswich, who took part in the initial pilot project, said: “Using this new technology over the past few years has changed my life for the better. By self-monitoring daily I can see changes - like losing weight and drops in lung function - that mean you can quickly make small adjustments to your routine to stop them becoming big issues. It shows me that I need to eat more, rest or even contact my hospital earlier then my next appointment date.
“I haven’t needed as many admissions and feel happier for having my health more controlled. I am in control instead of cystic fibrosis controlling me.”
Starting treatment at an earlier stage
Building on the learning and successes of SmartCare CF, people will be able to monitor their condition at home – which, with their consent will also be accessible to their medical team in real time. The researchers will then test using machine learning – a form of artificial intelligence – to see if medical teams can step in when a change in their health is detected and treatment is needed, rather than attending regular, routine check-ups that may be more disruptive than necessary.
Professor Andres Floto, at the University of Cambridge and funded by the Trust said: “Our early findings showed that people were happy to input their health data at home. In this next step will test whether, when we spot a change in people’s health data, we can step in and treat at an earlier stage before they even have symptoms. Using the machine data in this way is what will radically change how people with cystic fibrosis are cared for and treated.”
Dr Janet Allen, Director of Strategic Innovation at the Trust said: “This new funding could transform at speed the way CF is monitored and treated using artificial intelligence at home. This new technology could make all the difference to people’s health and quality of life ... [and] will allow us to significantly increase the pace of progress."