DIGITAL DATA SHARING CAN CHANGE HEALTHCARE CONVERSATIONS
Dan Beever was delighted when he was asked to join a research team evaluating a new cystic fibrosis (CF) digital health hub designed to help people with CF to adhere to their inhaled medications.
Dan had not only worked in clinical trials but had lived with his own cystic fibrosis for over 30 years and knew the challenges around taking long-term medications.
“When I was first approached to be the public and patient involvement lead for the project, my adherence was terrible,” Dan tells This Is MedTech. “It was probably around the time we had just had our eldest daughter and our routines were completely thrown.” While Dan was not eligible to trial the platform himself, simply talking to people about the behaviour change elements of the hub gave Dan the impetus to get his own medications on track. Once the trial was complete, Dan went on to use the hub himself and is now a strong advocate for the platform.
The digital self-care and behaviour change hub is designed to help people with CF to adhere to medications that are taken using nebulisers – medical devices that turn the medicines into a fine mist that is breathed into the lungs. Adherence is tracked using innovative Bluetooth-enabled nebulisers, which record the time, date and duration of each use and automatically transfer the inhalation data to the hub. By being able to see their adherence in real-time on their smartphone or desktop, and share it directly with their clinicians, people with CF are helped to identify their own barriers to treatment-taking and can access strategies, tools and information on the hub to help them stay on track.
“In the past, you couldn’t access your own nebuliser data like you can through the health hub,” Dan explains. “You had to take your nebuliser along at your clinic visit and someone would download it manually. It was like waiting for the results of an exam.”
“The resulting conversations probably weren’t as constructive as they are now either,” Dan reflects. “But with the health hub, it is all very transparent and open. The way the health team approach it and the whole behaviour change aspect of the hub means that I think those conversations feel a lot better. It’s about seeing where someone might struggle and identifying what can be done to help.”
Even with good adherence, Dan still benefits from using the system. “It is nice to see over a period of time how well you’ve done, and there are notifications and well-done messages which I still quite like, even after all these years,” Dan says. “I also feel like if things did drop off, for whatever reason, we’re all just very well versed on how things are going with the adherence. It’s just a really powerful tool for opening up conversations.”
“While the hub is very focused on nebuliser use and things like lung function, I think it’s actually a tool for the management of the entire relationship between the clinician and the patient,” Dan reflects. “If you can have that trust and understanding around adherence, that just feeds into all the other aspects as well. I think it has made a huge difference to CF care from my perspective.”