Project Breathe is a remote health monitoring study that is part of the Trust’s research programme on digital health. A core part of the research study is the development of a smartphone app to collect and monitor health measurements and change the way that care for people with CF is managed.
As the gravity of the coronavirus (COVID-19) pandemic emerged, the Project Breathe team started to discuss how they could make elements of their research available to the wider CF community. The first thing that they looked at was making the Project Breathe app publicly available, to allow anyone with CF to monitor their health remotely.
Ad-APP-ting to different circumstances
The Project Breathe app is designed to collect data that is meaningful to a person with cystic fibrosis. The data can be entered in a range of ways: manually, via Bluetooth or via systems such asFitbit. It also includes self-reported measures such as ‘How much have you coughed today,’ or ‘How well you are feeling’. Feedback from the research study so far has shown even these simple self-reported measures may be useful to guide self-monitoring.
Earlier projects within the Trust’s digital health programme demonstrated the feasibility of asking people to monitor their health on a daily basis. However, the technology they used was clunky and time consuming to use, and improvements were needed. One of the great successes of Project Breathe has been the development of this app – for use on any smartphone – that can speed up the time it takes to enter the home monitoring measurements and make it much easier for people to review their data.
Kirsty Hill is Managing Director of Magic Bullet, the company developing the app and adapting it for general remote monitoring. She said: “We wanted to be able to help people with CF while face-to-face CF clinics are on hold. From our research, the feedback we receive most frequently is how empowering and enlightening users find spotting trends in their data. Although new users who download the app are not taking part in the research study, it would be great if they could still access these benefits. We hope that people will find the app intuitive and easy to use, as it has been designed for people with CF, by people with CF.”
The Project Breathe app is now available on app stores and free for people with CF to use. While the instructions on Magic Bullet’s website are written with those taking part in the research study in mind, the Trust has also provided some information on how to use the app to monitor your health outside of the research study.
The extensive development required to make the app has been funded through research grants, and Magic Bullet will not profit from the wider use of it. With your consent, Magic Bullet can arrange for your CF centre to see your data and help in managing your CF while at home. The CF team will be charged set up costs to do this, charged at a minimal ‘at-cost’ basis to allow Magic Bullet to recover the additional costs.
In response to the COVID-19 pandemic, the Project Breathe team have also started the process of opening up two further research centres for the study in Cardiff and Glasgow, six months sooner than planned.
“We know there are so many obstacles to get the project started at the moment, but we’ve begun by providing the two new research centres with the app and the spirometers which are central to the study,” explained Dr Janet Allen, Director of Strategic Innovation at the Trust and one of the investigators in the research study. “When the clinicians step down from their frontline duties in caring for people with COVID-19, then they’ll be familiar with the app and the equipment, so getting the research project underway will be easier.”
The importance of health monitoring research
For people with CF, clinic visits can be time-consuming and expensive; however, it can be the only way for them and their clinical team to monitor their health. Research into health monitoring will help to establish the most effective ways of delivering remote monitoring, as well as use the data collected to improve future care.
Analysis of data from previous digital health study ‘SmartCareCF’ showed that it might be possible to predict when someone is likely to have a flare up of symptoms,often days before they start to feel unwell. Anonymised data from participants in the Project Breathe study will feed into this data analysis, to help test these predictions. If the predictions are accurate, then it may change the way lung exacerbations are managed in the future.
Regular data collection allows individuals with CF to track their own health. Some have even said that they have found it empowering and that it has motivated them to stick to their treatments and exercise routine more rigorously. One participant explained: “I can see when my lung function is good or bad and adjust my lifestyle accordingly. I can see what makes it better.”
The current Project Breathe research study is also exploring whether someone who is feeling well, with stable health (supported by information from the app) can safely avoid a routine appointment at their CF centre. This could avoid people with CF attending routine outpatient appointments just to be told that everything is okay, and reduce the risk of cross-infection from the hospital environment. The testing of virtual clinic appointments is ongoing at the Royal Papworth Hospital. Dr Charles Haworth, one of the clinicians involved in the study, commented: “The home monitoring platform allows people that are well to avoid unnecessary trips to hospital. This is becoming even more important due to the greater stability in health seen following the introduction of CFTR modulators.”
There is still much research to be done. The Project Breathe study continues to test the role of regular remote monitoring, and explore how machine-learning predictions will impact the future of clinic-based care for people with cystic fibrosis. However, in the interim, the Project Breathe app can help provide support for the CF community and their healthcare teams during the COVID-19 pandemic.
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