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We want to make sure that all of our users are able to get the most out of their Breathe RM app. Let us guide you through the app and show you how to make the most of the features.
Making Breathe RM work for you.
Thank you for helping us develop Breathe RM into what it is today. Because of your participation we have been able to improve the app in many ways. Royal Papworth hospital has recently secured more funding from the National Institute of Healthcare Research (NIHR) to advance the use of Breathe RM in CF and bronchiectasis (NCFB) . This would not have been possible without the data that all our users have captured through the app since 2019.
We know that users get more from Breathe RM, the more they use it. You have told us that many of you like to use the app in different ways. So we have created a guide to empower you to use Breathe RM in a way that is most useful to you and your own health goals.
We want you to use Breathe in a way that makes sense to you. The more data you enter, the more you and your CF team can learn in the long-term. However, we understand that certain metrics come with feelings attached. Some users told us that recording their lung function can make them anxious at times. We discuss some ways of managing that in the user styles below. Users shared different reasons for taking part in Project Breathe, ranging from motivation to keep fit, a passion for health research, reassurance they were stable before holidays or life events and even a desire to track complex parts of CF health.
Which of these user styles best represents you? Maybe you identify with more than one. Read on and let us know how you like to use Breathe via our new CareCircle chat room.
Disclaimer: Please be mindful that if you are taking part in the upcoming ACE CF trial, you may need to complete your spirometry more often.
1. The Ad-hoc checker. Do you use Breathe RM to reassure yourself about your CF health?
“I think when I’m busy…trying to be more flexible and not feeling guilty [about daily input] would take some of the strain off”
Your CF
- You struggle to fit in your CF care into your daily routine.
- You are mostly well, with some hiccups.
- You may be taking a CF modulator.
- Your mental health is sometimes affected by CF due to anxiety around your health status.
Your Breathe Style
You use Breathe RM occasionally, before a virtual clinic and when your routine is about to change. Becoming a frequent user during uncertain or unstable times. You like to use the app to check health markers before going away on holiday and during exacerbations but may not check in so often when you’re doing well.Helping you get the most out of Breathe RM
- Set a phone alarm to complete scores at a convenient time. Commit to completing scores five time a week, for a month. Handy tip: Once you start doing this the app will adjust the reminders it sends, so that you receive a notification at the time you usually check in.
- Check your schedule for the next two months and put in reminders to complete Breathe scores before upcoming holidays or key events. We know from our users that completing your scores before changes in routine can help you feel in control of your health.
- When you don’t have time for every metric, just enter cough and wellness to help you track your mental health.
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Check out the trend view of resting heart rate (RHR) and lung function. Useful if you want to see a ‘zoomed out’ view of how your lung function and RHR may be impacting each other. Over time this can help build a picture of what clinical stability looks like for you. You can learn more about how smart watches like the Fitbit capture heart rate data here. It’s worth entering your spirometry when you can as this gives you more to look at in the graph view!
Breathe RM is there for when you need us, use the app whenever you need to reassure yourself about your health.
https://help.fitbit.com/articles/en_US/Help_article/1565.htm
2. The remote clinic advocate. Do you use Breathe to help you stay healthy at home?
“Breathe enabled me and my team to decide I only needed oral antibiotics and didn’t need to travel to hospital.”
“Breathe keeps me occupied. The activity info encourages me to be more active.”
Your CF
- You travel a significant distance to attend your CF clinic.
- You may struggle to balance the cost or time of travelling to hospital.
- You prefer remote clinics to in-person visits.
- You sometimes experience anxiety before CF clinics.
Your Breathe style
You use Breathe RM regularly in some capacity, although you don’t always remember to complete the full scores. Using a smartwatch motivates you to be more active. You see Breathe as an important part of your care routine because it helps keep you out of hospital.Get more out of Breathe RM
Got a clinic appointment scheduled? Make sure your event entries in Breathe are up to date before your clinic. Breathe RM was developed to keep PWCF out of hospital as much as possible. We’re here to help you stay healthy at home.
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Have you tried using the app calendar? You can check in on how you have been feeling and remember any unusual events or observations that are unusual, before a virtual clinic. You can make notes in the calendar entry for that day so that you have them to hand: no more losing your list of questions when you’re about to chat to your doctor!
3. Fluctuations and complications. Do you use Breathe to monitor how your CF uniquely affects you?
“I find it difficult to measure my spiro daily as this causes anxiety.”
“Postpartum recovery has been more engaging due to statistics provided by the app.”
Your CF
- You have experienced some complications or changes to your CF which are unusual or not ‘textbook CF’.
- You are likely taking a CF modulator.
- You would like a way to understand or track aspects of your CF that are not limited to your lung health (reproductive, weight or metabolism).
- Your mental health is sometimes affected by CF due to anxiety around your health status.
Your Breathe style
Your usage of Breathe is variable: you know it’s important but sometimes you find it hard to record your spirometry or weight. You have used (or are interested in using) Breathe to keep track of a CF symptom that is not related to lung health.Get more out of Breathe RM
If you’re struggling to complete your full scores every day or feeling anxious about your spirometry, you can easily enter a daily wellness and cough score in a matter of seconds. Doing this every day is still a great way to monitor your health over time.
A note about weight: weight in cystic fibrosis is a complex topic. The CF Trust have created a series of leaflets on the topic of body image, diet and nutrition in CF. Topics covered include healthy eating, weight gain and weight loss, high and low BMI. You can find them all
If you are struggling with a weight related issue, please discuss it with your CF dietician.
CF is different for everyone. We are here to help you understand the unique ways in which your condition affects you.
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We understand CF is about more than lung health! Did you know you can record and track different types of symptoms? Using the events feature you can monitor everything from stomach or gut pain (gastrointestinal pain), menstruation and swelling (oedema).
Take five minutes each weekend (set a reminder on your phone) to reflect on anything new or unusual in your health that week. Be sure to capture it through Breathe, using the events feature. Give Breathe events a go – be consistent with score capture for a burst of time, during menstrual periods, health kicks and when you need more information about your body. This can help you identify and spot trends if you are experiencing a new symptom or trying out a new fitness regime.
4. Doing it for the science. Do you use Breathe RM to give back to health research?
“Information and feedback are the most important motivator for me”
“Using Breathe is helping to identify how stress affects our health”
Your CF
- You like to manage your CF in a way that feels proactive.
- You enjoy taking part in clinical trials or healthcare research in some form.
- You may have a professional interest in healthcare because of your experience as a patient.
Your Breathe style
You were one of the first to start using Breathe RM at your clinic. You use the Breathe app daily or very regularly (five times a week or more). You like to get updates about the technology and science behind the app and you’re keen to discover the impact your participation has on the project.Get more out of Breathe RM
If you are using a Fitbit or Apple Watch, you might have noticed the introduction of heart rate variability (HRV) to your watch metrics. According to , heart rate variability measures the differences in time between heartbeats. A higher HRV is generally associated with good health.
So what do we know about the importance of HRV in cystic fibrosis? Research in this area is in the early stages, but one study which looked at PWCF under the age of 18 with mild to moderate symptoms, showed that exercise had a positive effect on heart rate variability. You can read more about the study
You can read more about HRV tracking on and . HRV data is not shown within the Breathe app, but you can view it in your Fitbit or Apple Health app.
While using Breathe, have you noticed any trends or correlations between your FEV1, heart rate or HRV?
Breathe RM is a great way to contribute to health research within the CF community. Thank you for your commitment!
https://www.healthline.com/health/fitness/what-is-heart-rate-variability
https://www.fitbit.com/global/uk/technology/health-metrics
https://www.apple.com/uk/ios/health/
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You already know Breathe inside and out so we don’t need to tell you more about the app features. We want your help to keep making it better! Join our CareCircle community and tell us what you want more of and what is not working for you. It’s a completely private virtual space where you can share information about Breathe and learn more directly from the team behind Breathe, Magic Bullet.
*Press Release December 2022*
Royal Papworth Hospital awarded £3.4 million for major new UK-wide cystic fibrosis and bronchiectasis trials
Researchers at Royal Papworth Hospital NHS Foundation Trust will receive £3.4 million to fund new UK-wide trials investigating if machine-learning technology can transform how people living with chronic respiratory conditions manage their health.
Previous studies have shown it has the potential to improve health and spot signs of lung infections days before symptoms appear, avoiding admissions to hospital.
The team, led by Professor Andres Floto (Royal Papworth Hospital and the University of Cambridge), will examine the impact of home monitoring and machine-learning decision support algorithms for people with cystic fibrosis (CF) and non-CF bronchiectasis (NCFB).
The team has previously completed a multicentre UK-wide feasibility study (SmartCare CF) which demonstrated the potential benefits of home monitoring in CF. From that, the team ran a clinical implementation programme (Project Breathe), introducing home monitoring into routine clinical care in four CF centres in the UK and Ontario, Canada.
Research participants were provided with equipment – such as a FitBit, pulse oximeter, spirometer and electronic scales – to measure key indicators such as blood oxygen levels, lung function, weight, sleep and temperature every day, and then upload the results via a software platform (Breathe RM).
Data scientists from the University of Cambridge and Microsoft Research have now used this anonymised home monitoring data to train machine-learning algorithms to predict future health deteriorations 10 days earlier than currently possible. This would allow clinicians to begin treating patients sooner to potentially head off serious, lung damaging infections.
The researchers will receive £1.9m from medical research charity LifeArc and £1.5m from the National Institute for Health and Care Research to test the artificial intelligence technology at scale in a clinical trial.
They will explore the application of novel sensors to monitor health at home and to test the feasibility of home monitoring for patients with NCFB.
Starting in early 2023, the programme, which has been co-developed by people with direct experience of CF and NCFB, will enrol up to 500 adults with CF and NCFB across the UK.
The team will receive advice and support from LifeArc to develop the technology to commercial standard so it can be made available to patients worldwide.
If proven to be effective at scale, the technology could transform the lives of patients and deliver substantial cost and time savings for the NHS.
Professor Floto, Honorary Consultant at the Cambridge Centre for Lung Infection at Royal Papworth Hospital, said: “These studies are incredibly exciting. They have the potential to provide both immediate and long-term benefits to people living with chronic and debilitating lung conditions.
“It is a unique opportunity to empower people to take control of their own health and reduce the impact the disease has on their daily life, in turn improving their quality of care and saving time and money for the NHS.”
Dr Catherine Kettleborough, who leads the LifeArc Chronic Respiratory Infection Translational Challenge, said: “This new technology has the potential to transform how people living with chronic lung conditions like BE and CF monitor and manage their condition. By detecting infections before symptoms appear, this technology could enable patients to start treatment earlier before they become seriously unwell, avoiding unnecessary hospital admissions and massive disruption to their lives.”
“Self-monitoring my health through Project Breathe has helped me pick up signs of exacerbations more quickly, meaning problems have been intercepted earlier,” said Sammie Read, 42, from Stowmarket, Suffolk. “This has given me a better quality of life as I do not need to be admitted as an inpatient for intravenous antibiotics as often.”
Steve Churchill, 44 from Hertfordshire, also has CF and has been monitoring his health from home using technology since November 2019. “It was perfect timing for me with the COVID-19 pandemic arriving a few months later when I needed to shield. I have been able to keep an eye on my health more closely myself, a benefit that was particularly useful during the pandemic.
“There have been a few times when I have started oral antibiotics earlier than I would have done otherwise, which may have prevented some hospital stays because I’ve been able to spot a possible problem early.”
An additional arm of the trial will investigate the impact and effectiveness of novel, small wearable devices that continuously monitor the health of people with CF.
“It would be great to have the recording done passively,” added Steve. “Managing my CF takes a long time – four hours a day when I am well and far longer when I am ill. Anything that can reduce the burden of my health regime would be very welcome.”
“Having the data picked up more easily or automatically without having to record it myself would be even easier,” Sammie concluded. “It would save more time, allowing me to continue living my life without having to upload data daily.”