How a cloud-based solution is transforming care for people with cystic fibrosis
Sitting beside their son during one of his weeks-long hospital stays over the Christmas holidays a few years ago, David and Kirsty Hill had plenty of time to worry and think.
As 12-year-old George lay in an isolation room, receiving antibiotics to treat a bacterial infection related to his cystic fibrosis, a progressive genetic disease that damages the lungs and digestive system, the couple thought about what managing their younger son’s disease involved — the daily regimen of medications and nebulizers, the yearly stints in the hospital, the frequent interruptions to school and work, the dread and worry each time George developed a cough.
David and Kirsty were actively involved in cystic fibrosis charities, running half-marathons and doing 100-mile bike rides to raise funds and awareness. But could they do more? As a domain solution architect for Microsoft UK, David was using his technical skills daily to benefit customers. How, he wondered, could he channel those abilities and tap the expertise of his colleagues to use technology to improve the quality of life for George and other people with the disease?
Those musings in a lonely hospital room led to what could be a groundbreaking approach to managing cystic fibrosis — a solution called Project Breathe that seeks to give patients greater control over their health, might reduce the need for time-consuming and risky hospital visits, and could even prolong life.
The smartphone-based solution allows people with cystic fibrosis to monitor their health at home with devices that measure key indicators such as lung function, blood oxygen levels and activity. That data is then stored in the cloud and can be accessed by clinicians on a dashboard using Power BI, Microsoft’s data visualization platform, to look for trends and determine when patients are becoming unwell. By tracking their own data, patients can intervene earlier and potentially head off serious, lung-damaging infections.
The solution was developed through a consortium involving Microsoft, the U.K.-based Cystic Fibrosis Trust, the University of Cambridge, Royal Papworth Hospital in Cambridge, Microsoft Research and Magic Bullet, a social enterprise company Kirsty Hill runs whose purpose is to improve quality of life and outcomes for people with CF.
The consortium launched a research project on Project Breathe in 2019 to investigate the viability of home monitoring for cystic fibrosis patients. The project was humming along and showing promising results when the coronavirus pandemic hit, bringing the need for remote health monitoring acutely into focus.
Health authorities advised patients with cystic fibrosis, who are particularly vulnerable to respiratory infections, to isolate at home. In-person clinics were canceled across the U.K. and the Project Breathe team shifted into high gear to make its app more broadly available to people who suddenly found themselves trying to manage their cystic fibrosis at home.
“We realized we were sitting on this solution that was restricted to a 100-person research project and thousands of people could benefit from it,” Kirsty Hill says. “Suddenly there was an opportunity to have a much bigger impact.”
Cystic fibrosis, or CF, causes the body to develop thick mucus that can clog lungs and lead to infections and respiratory failure. Better screening and treatments have greatly improved life expectancy, but the disease requires time-intensive daily regimens and is often unpredictable, causing frequent disruptions in patients’ lives — including routine clinics every four to six weeks that involve a multidisciplinary team of specialists and take the better part of a day.
John Winn, a principal researcher at Microsoft Research in Cambridge and part of the Project Breathe team, understands the burden of CF as well as anyone. Winn has cystic fibrosis, and when the pandemic struck, he moved out of the house he shares with his wife and two young children near Cambridge and into a rental home a few minutes away.
He isolated alone there for four months with a supply of food so he didn’t have to come into contact with other people, eating meals with his family twice a day over video chat. Winn moved back with his family for the summer but is prepared to isolate alone again during the school year if need be.
Since Winn’s lung function is diminished by about 30% because of the disease, contracting COVID-19 would pose a serious risk for him, he says. Being able to manage his health at home and stay out of the hospital is critical.
“In the last few years we’ve seen a huge step forward in the drugs available to treat CF, but the processes around managing the disease and the practice of managing it in clinics has not really changed much in 20 years,” Winn says. “Project Breathe is about revolutionizing that.
“I’m very, very excited about it. This project is incredibly close to my heart.”
Dealing with CF was already challenging for Caroline Powell, a busy teacher who lives near Cambridge. She has frequent lung and chest problems, takes about 80 pills a day and has “always had to work hard” at her health. Each time she has a medical appointment or requires hospitalization, Powell worries about who will cover for her and about arranging lessons for her students. After her son was born almost a year and a half ago, those concerns intensified.
“I don’t want him coming to hospital with me all the time or being away from me when I’m hospitalized,” Powell says. “That’s now my biggest incentive to make everything more manageable.”
When Powell heard about Project Breathe during a routine clinic visit to Royal Papworth Hospital in late February, she was eager to try it. She hoped the approach might allow her to head off hospitalizations and avoid some of the clinics she was attending every four weeks. Having more insight into her health also appealed to her.
The Project Breathe kit, which is provided to study participants, includes a free smartphone app, a Fitbit to track activity and sleep, an oximeter that measures oxygen levels in blood and a spirometer that gauges lung function. That data is automatically uploaded to the app, and patients also enter self-reported data on how much they are coughing and how they’re feeling overall. By monitoring her data collected through the app over a period of weeks, Powell realized she needed to start on a course of antibiotics to treat a lung infection. After the pandemic lockdown started in the U.K., she had her first virtual clinic with a CF specialist nurse at Royal Papworth who was able to access her data through the Project Breathe dashboard, which provides graphs and other visual information, and get a clearer picture of her condition.
“We were able to go into a lot of detail because she had all my information there and she’d read over my data,” Powell says. “Unlike a physical clinic where they just use the data from that one appointment, she was able to spot the pattern of my symptoms increasing.”
Powell hopes the Project Breathe approach can enable earlier interventions that will help keep her out of the hospital and minimize disruptions to her life.
“It’s really helpful to give me insights into my own health and spot these patterns of deteriorations before it’s too late,” she says. “So far, it’s really proving to be useful in that way.”
Janet Allen is the director of strategic innovation for the U.K.-based Cystic Fibrosis Trust, which ran an earlier study on the feasibility of home monitoring for CF patients. Led by Andres Floto, a University of Cambridge professor of respiratory biology, in collaboration with Winn, the SmartCareCF study enrolled 148 patients across seven sites, who monitored their health daily for six months.
Allen sees Project Breathe as the way of the future, an approach that empowers people with CF to manage their health care and challenges dated standards of care.
“SmartCare CF has shown the power of providing health care data to individuals who understand and know their own condition, and initial data from the Project Breathe pilot has shown that technology can be safely harnessed to disrupt health care models,” she says.
“The idea that you have to go to hospital even when stable to have your chronic condition managed, whatever that condition is, in this day and age shouldn’t be required. There is a definite need for (Project Breathe).”
After that hospital stay with his son a few years ago, David Hill returned to work in early 2017 and met for coffee with a couple of Microsoft colleagues, Giri Tharmananthar and Tom Chapman, and relayed his idea of using technology to create a remote monitoring system for people with CF.
Hill had a chance meeting with Allen at Microsoft and learned that for every 10 CF patients who attend clinics, eight typically did not need to be there and the other two needed medical attention weeks earlier. His goal for creating a self-monitoring system was twofold — to help patients avoid time-consuming clinic visits if they were well and identify declines in their health so they could be treated earlier.
“It was kind of a light-bulb moment, that if we could do something to solve both of those problems, it would improve quality of life,” says Hill, who lives in Reading, west of London. “We built the solution around solving those two problems.”
Tharmananthar was part of a small innovation team incubated at that time in Microsoft Digital that had been looking into solutions for digital health care. The vision of using technology to enable patient-driven health care beyond traditional medical settings had been around for 15 years or more, Tharmananthar says, but hadn’t made much concrete, sustainable progress. Hill’s idea seemed like a promising opportunity.
“Everything Dave wanted to do for cystic fibrosis was a tangible example of this thing we’d been talking about, which is a patient-centric platform that allows clinicians to access patient data,” he says. “There’s a concept of treatment pathways in health care, but it’s usually about the condition, and we wanted to put the patient at the center of it.”
As the project moved forward, Microsoft employees from across the company volunteered their time to help, Tharmananthar says, inspired by the personal story behind Project Breathe and the potential to make a difference.
“It really embodies that thing that Satya (Nadella, Microsoft’s CEO) talks about,” he says. “It’s not about what you do for Microsoft. It’s about the impact you can have in the world with what Microsoft can bring. It really does speak to that.”
With initial funding from Microsoft Digital, Innovate UK and the Cystic Fibrosis Trust, a small team led by Kirsty Hill, with support from Microsoft employees and input from health care professionals and CF patients at Royal Papworth Hospital, developed the Project Breathe app and a back-end solution that securely stores patient data in Azure. The app and solution, built entirely with Microsoft technology, have since been extensively developed and are operated by Magic Bullet for several health organizations in the U.K.
During the SmartCareCF study, Floto and Winn, with help from a Ph.D. student, used patient data to develop a predictive model that uses machine learning to detect signals which might be hidden in the data and can indicate when a patient is becoming unwell. The model is now being tested as part of the current Project Breathe study at Royal Papworth.
The study, which Floto oversees, initially enrolled 95 patients at Royal Papworth and was quickly scaled up after the pandemic hit to include two additional sites in Wales and Scotland, with around 500 patients expected to be enrolled by the end of the year. Plans for the coming year include adding a fourth site in the U.K. and working with Cystic Fibrosis Canada to implement a research study in Toronto.
“Project Breathe is about turning the previous study into a reality, in terms of actually changing clinical practice,” Winn says.
The first phase of the study aims to prove that home monitoring is safe and effective; later phases will involve testing novel new devices and capabilities with the solution and applying the predictive model to determine when patients are becoming sick. Early results show that the model can identify a decline in a patient’s condition an average of 11 days earlier than antibiotics would typically be started, Floto says. And almost all patients in the study have been able to skip clinics by using the app and reviewing their data with a clinician.
“We think Project Breathe may be a great solution to realize the widespread rolling out of virtual clinics,” Floto says. “If we can intervene earlier, we should be able to protect the lungs from long-term, ongoing damage.”
For Kate Eveling, who enrolled in the study in July 2019, being able to skip clinics has not only reduced the three-hour round trips required to attend them but alleviated her worries about going into hospitals.
“It’s just a scary thing. For me, it gives me a lot of anxiety,” she says. “I definitely think (the Project Breathe approach) is the future of CF clinics. It’s made things a lot easier.”
The novel coronavirus has raised new questions about what the future standard of care for CF patients might look like — whether there will be a return to in-person clinics at some point, more of a reliance on remote clinics, or a mix of both.
“The impact of COVID-19 is that everybody’s been forced to use a completely remote model for an unknown length of time,” Kirsty Hill says. “And what became apparent immediately is that patients already enrolled in Project Breathe have a huge advantage in that doctors can have a data-informed discussion with them, whereas for everybody else, there was no data reference to discuss.”
Britain’s National Health Service (NHS) is providing funding to supply spirometers to thousands of cystic fibrosis patients throughout the U.K., giving CF patients at least one of the pieces of equipment needed for the Project Breathe solution. The team hopes to find funding to cover the costs of making the solution’s back-end available to clinics beyond the study, which the NHS currently doesn’t cover. Ultimately, the goal is to enable Project Breathe to collect patient data passively and eliminate the need for self-monitoring, but reaching that point will require additional funding.
In the meantime, as coronavirus cases are again ticking upward in England and other countries, Project Breathe participants like Sammie Read are getting insights into their health from the safety of home. For years, Read was spending two weeks in the hospital about every three months being treated with antibiotics for infections caused by CF. She takes more than 40 pills a day and follows a daily routine of nebulizers, exercise and physiotherapy.
About five years ago, Read became so stressed between juggling work and caring for her school-aged son that her health spiraled dangerously downward. On her husband’s urging, she quit her job.
“With CF, it’s quite unpredictable. You can have a perfectly good day and be fine and the next day it’s like bang, you can’t breathe,” says Read, who lives in a rural area near Stowmarket, England. “It’s sort of like you’re just walking on eggshells.”
A longtime patient at Royal Papworth and a participant in the SmartCareCF study, Read heard about the Project Breathe study, enrolled and began monitoring her health at home.
By tracking her data and making adjustments as needed — exercising a little more if her lung function drops, starting antibiotics at home when an infection is coming on — Read went 18 months without being hospitalized. Even before the coronavirus halted in-person clinics, she was able to skip some of her scheduled visits after remotely reviewing her data with a nurse.
These days, with her son moved out of the house and her health more stable, Read is thinking about going back to work.
“Project Breathe has made a massive impact on my life,” says Read. “It’s definitely made my life easier. You’re in control, rather than CF being in control of you.”
Top image: David Hill, left, looks on while his son George uses a spirometer to gauge his lung function. Photo by Jonathan Banks.