CF Future Care: Putting people with CF in the driving seat

CF Future Care

Dr Su Madge is the driving force behind a digital platform called CF Future Care, putting people with cystic fibrosis (CF) in the driving seat to monitor their health at home.

Tell us about what you do.

I have several roles; I am a consultant nurse for adults with CF and an associate director for the Adult Cystic Fibrosis Service. I also hold the position of Clinical Chair for Infection and Immunity at the hospital. I started nurse training at University College Hospital, London and after a few years completed the Registered Sick Children’s Nurse training at Great Ormond Street Hospital. I was a ward sister on the respiratory high dependency ward for a few years and then developed one of the first CF clinical nurse specialist roles in the UK.

I continued in that role at Great Ormond Street Hospital until 2002, when I joined the Royal Brompton Hospital adult CF service as a consultant nurse. During that time, I completed a masters and PhD degree, both in the area of CF. We have a large adult CF multidisciplinary team which works closely together on a daily basis and which I am fortunate to be part of. There is also a paediatric CF service at the Royal Brompton and the two multidisciplinary teams work in partnership on things like transition and research.

“By putting data in the patients’ hands, there is hope it will start to equalise the power dynamic that exists between patient and the healthcare team who currently hold much of the data used for clinical decision making”

What facilities do you have at the Royal Brompton?

The Royal Brompton Hospital is one of the largest CF centres in Europe. We have a large number of adults with CF, this is historical as we were the first adult CF service in the UK, however there are now many more spread around the country. We have more or less the same facilities as all CF centres as we all have to meet national guidelines. These include single, en-suite rooms and space for outpatient segregation.

What is the current situation with supporting people with CF?

The current national CF problem is the increase in adult numbers, our paediatric colleagues are very good at looking after children with CF. Consequently, there are few childhood deaths. Nationally resources have not developed to meet this increasing need and there are now many adult centres in the UK with almost as many patients as the Royal Brompton.

How many people do you support?

We care for almost 600 adults with CF.

What are you doing to help people with CF to access healthcare?

People with CF are informed, by their clinical teams, from an early age that maintenance and awareness of their lung function is important to maximise their life expectancy (CF Trust, 2011). As a result, people with CF are expected to attend clinics at their specialist CF centre regularly to monitor their lung disease and prevent or halt disease progression (CF Trust, 2011). People with CF report that attending clinic so frequently for monitoring is significantly impacting on their quality of life. They must take time off work, arrange childcare and find the significant cost of travel into central London.

In addition to this, CF outpatient services are busy and frequently overbooked. A growing concern given that research in this area has predicted an increase in the numbers of adults with CF by 75% due to advances in medical care and associated increased life expectancy (Burgel et al, 2015). A recently published guideline in CF has urged healthcare teams to consider providing telehealth as an option for routine monitoring with benefits recognised both to the patient experience and in allocating hospital resources (NICE, 2017).

Tell us about CF Future Care.

This innovation project, Back in the Driving Seat, aims to address these challenges by empowering the person with CF to monitor their own CF health from home through a digital platform called CF Future Care. By providing self-assessment equipment and a technology platform to share that data with the healthcare team, this in turn unlocks the CF team’s ability to provide remote, virtual consultations and advice. It will allow people with CF to gain a greater awareness of their CF health and to see the impact of lifestyle changes or new medicines.

Why is it important to give people with CF more control?

By putting data in their hands, there is hope it will start to equalise the power dynamic that exists between the individual with CF and the healthcare team who currently hold much of the data used for clinical decision making. For the CF centre, it offers the opportunity to reduce the number of in-hospital clinic appointments and consider how to allocate resources better in view of the growing CF population.

How are you developing the platform?

We are being generously supported by the Royal Brompton & Harefield Hospitals Charity, who are raising £500,000 towards the project through their Back in the Driving Seat campaign. The project involves sourcing and providing self-assessment equipment for people with CF, designing and building a technology solution for sharing of health data, and the provision of remote clinical review over video link.

We have been scoping potential technology companies to build the data sharing platform and using additional self-assessment kits such as weighing scales and glucose monitoring. Individuals are continuing to test home spirometry and we have been holding remote consultations in order to obtain feedback from all users. This helps us get baseline survey data on how the clinical service can evolve and what functionality would be a priority in a technology solution.

How are you getting on?

The project is in part-implementation stage. So far, the following has been achieved:

  • Home spirometry kit and video-link technology tested
  • Home spirometry sourced and in use with 40 adults with CF
  • Remote clinical review over video-link tested
  • Animation created for people with CF on the purpose of health monitoring and sharing data
  • Co-design virtual workshops completed with 10 service users and 12 staff
  • Funding established from a combination of pharmaceutical and charity funds.

What’s the aim for the future?

The adult multidisciplinary CF team at the Royal Brompton and I want to help people see that those with CF and their families are part of the team and should be involved in decision making around treatment and care. We hope that this project will not only transform the future of CF care for our patients, but for patients across the UK.


 

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