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Providing evidence to UK Parliament’s Health and Social Care Committee on behalf of the CF community
This hearing saw Members of Parliament sitting on the committee question witnesses on the opportunities, issues, and progress of using digital technologies across the NHS.
Joined by Liz Ashall-Payne of ORCHA and Chris Askew of Diabetes UK, David presented the exciting opportunities and applications of digital technologies in CF care and highlighted the importance of involving people with CF and their experience as experts in their condition when designing and delivering new technologies.
Drawing on the CF community’s experience in this area, whether that is the application of home monitoring technologies or the effective use of extensive, secure data via the UK CF Registry, it was an opportunity to demonstrate how the CF community is helping drive forward digital transformation in the NHS.
During the inquiry, we also highlighted the need for consultation with the most important experts, people with cystic fibrosis, to make sure technologies work for them and the importance of our communities’ multi-disciplinary teams to support the adoption of new technologies.
Members of the committee were enthusiastic about the Trust’s own research projects to drive improvements and understandings in this area. They were particularly interested in our funded research into the feasibility of home monitoring of young people with CF and the use of algorithms to detect changes in an individual’s condition before they become symptomatically aware. Our own experience of obtaining access agreements for modulator therapies was also presented as a way in which data can be used to deliver opportunities and drive improvements for our community.
These sessions are useful opportunities for the Trust to provide meaningful input into the political decisions that affect how our care systems work for us and allows us to demonstrate our own expertise in this space. We will continue to respond to these government opportunities and campaign hard to influence change and showcase our success towards a life unlimited for everyone with cystic fibrosis.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.
We're uniting to campaign for better care and services for people with CF. Together, we can create a brighter future where people with CF can truly live a life unlimited.
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