CFHealthHub is a digital self-care and behaviour change platform, co-designed with Cystic Fibrosis (CF) patients to allow them to track their adherence to treatment through the use of Bluetooth-enabled nebulisers. This provides both the patient and clinical teams with visibility of the nebuliser use, facilitating open discussion and ownership. The platform is currently used in more than 70% of adult CF units in the UK.
The ability to provide remote support has become even more acute as a result of COVID-19. Individuals with CF are some of the most vulnerable individuals so allowing clinicians to support such patients without them having to attend hospital is invaluable.
CFHealthHub was originally stored in the University of Manchester Trusted Research Environment (TRE) in the Centre for Health Informatics. However the TRE is now being decommissioned so an alternative hosting solution was required.
We approached Research IT who advised on possible solutions to migrate the service. Given the experience of using Amazon Web Services (AWS) within Research IT and the advice available from an AWS solutions architect, this platform was recommended. As time constraints were tight, the CFHealthHub team decided to replicate as closely as possible the existing architecture. Research IT were able to recommend a number of AWS services to make this possible and advise on and assist with their configuration.
Moving identifiable medical data to public cloud presented as many challenges outside of the technical migration as within. We closely engaged with the Project Sponsor to ensure participants were notified and worked very closely with the UoM Information Governance Office (Laurence Malbeaux-King and Lee Moffat in particular) to ensure our migration continued to protect our patients.
Research IT provided a lot of technical support throughout from Mark Lundie, Brian Blower and Simon Hood. When deciding on our approach, we were keen to ensure that we worked in a way that complemented the direction of the wider University – we didn’t want to create yet another standalone UoM environment. Research IT helped us to understand the roadmap for the University and the work being done as part of the Research Lifecycle Programme to manage restricted data.
The migration to AWS has contributed to the long-term future of the hub and Mark and Brian were instrumental in helping the team to achieve this. Their input allowed the researchers to focus on their core activity of software development whilst having the comfort of support from Research IT.
Dr Pauline Whelan co-lead of the Digital Health Software team and University of Manchester lead for CFHealthHub said “Mark and Brian really went above and beyond to support our migration and fielded a lot of questions from the team. We couldn’t have done it without them!”.
But how does the platform perform in real life situations? The leader of the CFHealthHub project, Dr Martin Wildman recently reported back to the team on his use of the platform –
“Just logged on and off and it worked perfectly, can’t really express how useful it is at the moment to have the system, just carried out a consultation with a 25 yr old mother of 2 with an exacerbation and I was able to talk to her whilst looking at her data and support her thru fact that we can avoid hospital by increasing nebs secure in knowledge that she had done nothing at all in past 10 days so I am confident I can add oral antibiotics at home and she can add nebs and we can avoid hospital…it is an immense privilege to work with the CF team and we all stand on the shoulders of giants (each other) and standing together we can make all the difference in the world”.
If you are interested in using Cloud resources in your research project, get in touch with us.