Project Breathe

Project Breathe aims and future plans

Project Breathe is an ongoing study which is now running across four UK sites. Using home monitoring equipment can help participants to feel more in control of their health. It also provides more information to clinicians when they are assessing patients in clinic. 

Deciding when a person with CF needs treatment for worsening chest symptoms (exacerbation) is very challenging. In our continued efforts to find the devices that require the least possible effort from patients to detect changes in health we are starting some new cutting edge sensor studies that run alongside Project Breathe.

Royal Papworth Hospital are now offering additional pieces of equipment on various other studies. If you attend Royal Papworth Hospital and want further information. Please contact the research team, details below.

You said, we did

“Ongoing issues with Vitalograph spirometer displaying ‘bad blow’ even when blow has been done correctly—drives me crazy and discourages me from using the app. Sometimes takes five attempts to get a reading."

The app now records all efforts from the spirometer so that ‘poor blows’ picked up by the machine are also saved but marked so clinicians and data scientists can pick up which is which. You can now also manually input readings if needs be. Check out the 'how to' videos or get in touch with your local team for guidance on spirometry

Breathe RM app update

We are always keen to see your feedback and ideas on the questionnaires. In mid-November the latest app update went out. If you have not already noticed, the interventions icon in the top left corner has changed (see image below).

You are now able to indicate on the app a wider variety of events including antibiotics, pregnancy, and starting modulators such as Kaftrio or Symkevi (see image below). This will be reported in the app and when looking back at the data is easy to see.

Please ensure you have latest version of the app installed.

Check Breathe RM app is connected

Some participants have become disconnected from their clinic on the Project Breathe app ‘Breathe RM’. It is not always easy to tell if your app is still connected or not. Just because your app opens does not mean your data is syncing with your clinic.

To check this, go into your settings. If you are logged out, you will see an orange plus sign to the side of 'Breathe RM Account'. You will need to tap the + and log back in using your Project Breathe email address. If you need help with this please contact your team.

How the screen looks if you are logged in.

How the screen looks if you are logged out.

Home spirometer tips

Here are some useful tips for home spirometry:

• Be consistent - eg always sit down and use the nose peg.
• Limit moving your handheld spirometer. Try to keep spirometer still and move your head instead prior to blowing.
• Avoid covering turbine.
• Try to rest for one minute between attempts.
• An exclamation mark means you may have coughed or hesitated. 

Home spirometry troubleshooting

How to videos

Patient representative at Royal Papworth Hospital

Meet our patient representative, Sammie, at our next virtual support group on Thursday 20 January 2022 at 18:30.

Please come along to ask questions and discuss Project Breathe. Contact the Royal Papworth team for details.

We are looking to recruit more patient representatives. It would require as little or as much time as you can offer. Please contact Sammie for further details. 

New research opportunities

Patients at Royal Papworth Hospital are being offered the opportunity to take part in a study that uses an app to detect changes in the voice that may indicate being less well.

Sonde Health is a US-based company that specialises in the development of vocal biomarker products. Just like mothers (or doctors) can tell if we are not well from how we sound, Sonde develops technology that can work on smartphones and tell whether our voices indicate that we may be at increased risk for certain health conditions or symptoms. We are using the Sonde technology in Project Breathe to determine whether voice can be used to aid the assessment of how people with cystic fibrosis are doing. To take part in the study participants need to take a quick, daily voice recording on an app on their phone. Please let us know if you would like more information.

Contact details

Royal Papworth Hospital
Papworth.projectbreathe@nhs.net

Cardiff Hospital
projectbreathecardiff@gmail.com 

Glasgow
CysticFibrosisNursesAdult@ggc.scot.nhs.uk

Edinburgh
loth.projectbreathe@nhslothian.scot.nhs.uk
 

Welcome 

The Project Breathe (PB) team listened to your feedback. We are aware that you would like to have some news around PB. This project spans a five-year period so there is not always much news to share each month. Nevertheless, we thought you might like to know a few things.

Project Breathe

A reminder that PB aims to measure vital indicators in participant’s health every day from home. This gives participants more control over their condition and a better understanding of when they are showing early signs of deterioration or exacerbation.

The data can be viewed by clinicians remotely or at appointments to assist clinical decisions, for example when antibiotics are required, days earlier than would have previously been possible. 

Data analysis is currently in process which will facilitate further studies. 

The project started at Royal Papworth Hospital in February 2019.

Participation

We truly appreciate your participation. 

We have offered an incentive of £50 to all of those involved in Project Breathe at Royal Papworth Hospital to provide intensive data. We have paid £50 to 43 participants for their valuable commitment (some of these payments have taken longer than expected, and we apologise for the delay).

There are currently three other sites in the UK recruiting for Project Breathe: Edinburgh, Glasgow and Cardiff.

Technical Issues

We continue to address some technical issues that individuals may be experiencing when entering data, with equipment, or when people just feel like their daily input with PB is going nowhere.

Top tip

Please remember to check that you are connected to your clinic on the Breathe app. You can do this by checking in your settings. See below as reference.

Logged in

The Breathe RM Account section will be green and show a date and time.

Logged out 

The Breathe RM Account section will be orange and say 'not connected'.

If you are experiencing issues, please remember you can get in touch via email, text, phone call or face-to-face during clinic or as an inpatient. 

Other studies (Royal Papworth only)

At Royal Papworth we have other studies running that aim to assess and compare the current devices used with PB. We have recently been awarded £3.4million for major new UK-wide cystic fibrosis trials investigating machine-learning technology can transform how people living with chronic respiratory conditions manage their health.

Studies include:

ADAM: This is a multi-sensor that monitors temperature, activity, cough, respiratory rate and heart rate. The sensor needs to be worn for six weeks, about 20 hours a day. 

Circardia: This is a bedside device that monitors the respiratory rate and chest wall movement including cough of patients during a chest infection. This is done with a contactless device and can be only performed during hospitalisation.

Sonde Voice: We aim to identify if changes are present in the voice, and if so, can supplement current data collection methods that help detect chest infections.

In order to participate in any of these you must be part of the PB study. Please let us know if you would like to have more information about any of these studies. 

Update

We are very pleased to inform you that the PB team is growing. 

We are all working together in several projects (linked to PB) that aim to improve your health and lifestyle. Please get in touch if you would like further information. 

Royal Papworth Hospital - Papworth.projectbreathe@nhs.net
Cardiff Hospital - projectbreathecardiff@gmail.com
Glasgow - CysticFibrosisNursesAdult@ggc.scot.nhs.uk
Edinburgh - loth.projectbreathe@nhslothian.scot.nhs.uk