Cystic Fibrosis Trust
Since the Cystic Fibrosis Trust was established 50 years ago, much has changed for people and their families living with the condition.
Today people with cystic fibrosis (cf) live longer and this means that the support, advice and services that the Trust provides to the cf community which it exists to serve have changed too.
The Trust renewed its ambitious strategy in 2014, committing to raise more money so that everyone with cf could live a life unlimited. Part of this strategy was to engage with the cf community in a new way. In order to develop support, advice and services that really meets the needs of people with cf, the Trust wanted to involve them in the development from the start.
“Involving the cf community from the start really helped gain their buy-in which has led to far richer insights about how the Trust can support them than we would have gained from focus groups or more traditional customer research.” Iain McAndrew, Director of Engagement and Income Generation, Cystic Fibrosis Trust
The Trust chose to do this through an online platform where people can respond to challenges set by the Trust and the cf community, suggest solutions, build on ideas and develop support, advice and services that help people with cf to live a life unlimited.
Lucidity in partnership with 100%Open ran a series of workshops with employees, volunteers and most importantly people with cf to design the online platform.
The result was the Hack It Up! crowd which enables people with cf to collaborate to find solutions to some of the challenges that a life with cf presents.
Hack It Up! required and also helped to drive a cultural shift at the Trust. The platform was a new way of engaging with audiences and it was also a new technology. Hack it up! is co-facilitated by 100%Open and a member of staff from the Trust and the process of having a live project to work on has helped employees and volunteers learn as they go along – more effective than time spent writing strategies or talking about digital transformation.
The Hack It Up crowd has uncovered dozens of insights into the practicalities of living with cf, including how to keep active in hospital. Ideas have been generated for a new networked system for remote care that enables people with cf to manage their condition with less medical help. And the Trust is continuing its learning and transition to a more open and collaborative approach in order that they can better help everyone with cf to live a life unlimited.
"For the Trust, launching a platform like this felt like a leap of faith, but it's paid off both in terms of the ideas that are being worked on as well as shifting our approach to using digital and putting our beneficiaries at the centre of our work. Rather than just talking about lean methodologies - we did it and learned as we went along."Iain McAndrew, Director of Engagement and Income Generation, Cystic Fibrosis Trust