Video: A closer look into CFHealthHub, a platform to improve care for those living with Cystic Fibrosis

For HTN Now September 2021, we welcomed Dr Pauline Whelan from the Digital Health Software Team at the University of Manchester for a session focused on its CFHealthHub, a  platform that aims to improve care for those living with Cystic Fibrosis (CF).

Pauline started her presentation by providing a background on the Digital Health Software Team and their work: “We apply mobile and web technologies to health informatics research across a wide range of health domains. We adopt agile methodologies to co-produce digital platforms with clinical teams, with patients, with academic research teams, and with various other stakeholders.”

Pauline then moved on to discuss some of their work: “One of the projects we’re currently involved with is called CaFI, a project led by Professor Dawn Edge at the University of Manchester. The project aims to develop and test a culturally adapted family intervention for African and Caribbean people diagnosed with psychosis and their families. We know that people who experience psychosis that come from African and Caribbean backgrounds, often get poor treatment in mental health services.”

Pauline went on to explain how her team contributed to the overall CaFI project: “We became involved to develop the digital platform and to support the delivery of the intervention remotely. This obviously became increasingly important during lockdown when the delivery of face to face therapies was really difficult.”

CFHealthHub was the main topic of the presentation, and Pauline outlined the goal of CFHealthHub: “The overarching aim is to support adherence to treatment for people with CF, and so we want to reduce the burden of treatment for people with CF. This is one of the top patient priorities identified and the overarching aim really is to shift care from expensive hospital-based reactive care to affordable community-based prevention.

“We’re now at the point now of being used in about 60% of CF centres in the UK.  What we have really built is a digital learning health system, so it’s not just about technology, but it’s about the programme, supporting it and the implementation around it.

“One of the things we have started to do recently is to integrate directly with hospital record systems. A key goal is obviously to provide a seamless experience for clinical teams and reduce the burden of managing multiple logins, so nobody wants to have to log into multiple stand-alone systems. The goal of this really is that if a clinician logs into their normal NHS system they can be taken through to CFHealthHub platform seamlessly and view patient data directly rather than needing to log into a stand-alone system to access the CFHealthHub.  The overall goal there is obviously to reduce the clinical burden and increase clinical engagement.”

Pauline then described the start of the CFHealth development process: “Going back to the beginning, we started with a 14-month extensive and intensive period of co-production with people with CF understanding the requirements. Then we entered the 12-month pilot study across two adult CF centres with 64 patients and after that we had a 12-month randomised controlled trial across the UK. That had 19 adult centres and 607 patients is one of the largest CF trials in the UK.”

Towards the end of the presentation, Pauline focused on the lessons learned: “I think we learnt that things will change, requirements will change, being agile really helped us to be set-up to accommodate change and to be able to release software frequently. We definitely learned interoperability is a goal across the system, it’s not a widespread reality yet and integrating with hospital records systems is still a big challenge.”

To view the session in full, watch the video below: