CFHealthHub for managing cystic fibrosis during the COVID-19 pandemic

Level of innovation

One of the experts found CFHealthHub to be highly innovative because it reports how well a person is taking their medicines to both the person and their clinical team. This helps discussion about improving how well people take their medicines and self-manage their cystic fibrosis (CF). Another expert noted that virtual monitoring of people with CF during the COVID‑19 pandemic is now very common, but still described CFHealthHub as novel. One expert noted that while there are other apps and data collection systems on the market, CFHealthHub was the only system that works with both of the most commonly used nebulisers (I‑neb and eTrack). Others need manual data input rather than automatic data collection. One expert stated that CFHealthHub was not a major innovation because using nebulisers that can monitor how well people take their medicines is not new. However, another expert noted that the optional linking of data to the patient's clinical team was novel. There were 2 experts who noted that the innovative aspect of CFHealthHub is the included behaviour change tools.

Potential patient impact

All 4 experts acknowledged that there is a lack of evidence to show the effectiveness of CFHealthHub. They noted that the results of the upcoming RCT will be essential to prove its effect. One of the experts noted that evidence is needed to prove that CFHealthHub improves medicines adherence and that this is linked to improvements in patient outcomes such as exacerbation rates.

All 4 experts noted that using CFHealthHub could offer benefits to patients. Of the experts, 3 stated that they would expect the benefits of CFHealthHub to be improving medicines adherence. Two experts added that CFHealthHub has improved clinical consultations by enabling discussions about this. One noted that patients often overestimate how well they stick to their medicine plans, and having an honest discussion about the data was helpful. An expert reflected that these discussions included how the patient may be struggling with the burden of treatment, how they fit treatment around their everyday activities, and how the CF team can support them in this. They noted that CFHealthHub may be particularly useful for people with CF who are transitioning from paediatric to adult care and gradually taking over responsibility for their treatment from their parents.

An expert stated that while some people engage well with CFHealthHub (about 60% adults with CF in their centre), others have found it to be intimidating and have declined engaging with the system. The expert liked the fact that the patients are in control of this decision, rather than their clinical team, and patients could remove themselves from the system if they wish.

Potential system impact

Of the experts, 3 acknowledged that there is currently a lack of published evidence to support the claimed system benefits of CFHealthHub.

All 4 experts noted that (if proven effective) CFHealthHub may lead to system benefits. Benefits included reducing hospital admissions, reducing the need for intravenous antibiotic treatment, and reduced medicine waste. One expert was sceptical that these benefits would be realised in practice. Three experts considered that CFHealthHub would present an additional cost to standard care. One expert thought using CFHealthHub would be unlikely to need additional staffing and was likely to improve the way that medicines adherence was assessed.

General comments

One of the experts noted that the introduction of new CF transmembrane conductance regulator (CFTR) modulator therapies is changing the care landscape of CF. This means many people with CF may move away from having nebulised therapy. Two experts noted that there was currently a lack of evidence to correlate medicines adherence with improvements in longer-term patient outcomes. Another expert noted that some people with CF use dry powder inhalers instead of nebulised therapies, and so CFHealthHub would not automatically track these.