Showcasing Partnerships: Cystic Fibrosis Trust

By Belinda Cupid, Senior Impact Adviser, Cystic Fibrosis Trust

Published: 6 September 2023

AMRC’s Festival of Partnerships is shining a light on partnering – how best to do it, the challenges it brings, and showcasing great examples from the sector. A highlight of the Festival so far has been hearing from our member charities about the diversity of ways in which to partner: with each other, industry, government and more. We didn’t think it was fair to keep all these insights to ourselves. So, in this ‘Showcasing Partnerships’ blog series we’ll be hearing from some of our charities about these partnerships, their challenges and successes, as well as lessons learnt.

The fifth blog in this series comes from Belinda Cupid, Senior Impact Adviser at Cystic Fibrosis Trust, and covers the charity’s work with researchers at the University of Nottingham, members of the CF community and the James Lind Alliance to refresh its research priorities.

Tell us a bit about your charity and the research it funds

Cystic Fibrosis Trust is the only UK-wide charity uniting people to stop cystic fibrosis (CF). We fund vital research, improve care, speak out and race towards effective treatments for all. We won't stop until everyone with cystic fibrosis can live without limits.

The Trust is supporting and enabling delivery of a broad and dynamic portfolio of world-class innovative research. Through our research funding awards, our population-based UK CF Registry and our Clinical Trials Accelerator Platform (CTAP) our aim is to ensure that every person with CF in the UK can live a long and full life.

What is your role at your charity and what does a typical day look like for you?

I’m the Senior Impact Adviser in the research team at the Trust. I’m involved in communicating our research activities, and sharing the impact of the research we fund. A typical day might range from liaising with researchers to hear about their research, writing updates on research for colleagues in our marketing and communications team to share, to keeping up with the latest news in CF research.

Tell us about a partnership your charity has been involved in

Last year we were part of a project to refresh the priorities for CF research, it was an exciting project to be involved in.

We’re proud to say that we were the first disease-specific group to conduct a refresh of a James Lind Alliance Priority Setting Partnership (PSP). So much had changed for people with CF and their families since the PSP was conducted in 2017, that it was time to review whether the priorities had changed.

It’s been an eventful time for people with CF in the last few years, for example moving to more online appointments and digital health monitoring during and since the pandemic, and for many, access to new medicines that have significantly improved their health.

CF research priority refresh project was a partnership between Cystic Fibrosis Trust, researchers at the University of Nottingham and members of the CF community – that is adults living with CF, children with CF, family members and their loved ones. The partnership was facilitated by the James Lind Alliance (JLA) team at the NIHR and supported by a steering committee with a wide range of nationalities and expertise.

What were the main benefits of this partnership as opposed to doing the same project alone?

Two things were really important in this project – to share, disseminate and encourage participation in the project surveys as widely as possible; and to ensure we had a robust discussion and analysis of the results from the surveys. To achieve this, all members of the partnership played to their strengths; we simply couldn’t have done this project alone without our partners' expertise and contacts.

Members of the CF community were essential for us to be able to reach their peers, at the Trust we used all of our channels and contacts as widely as we could. We were also able to benefit from the support of other patient organisations throughout Europe to translate the surveys into different languages. Colleagues at the University of Nottingham conducted the detailed and painstaking coding and analysis of the responses to the surveys. The JLA team were our objective, meticulous and patient guide through the project.

What makes charities such good partners?

I think charities that support people living with a condition and also fund and support research are an essential partner for many different projects. For this project we were able to gather the views and opinions of a wide range of people. We are now directing our energies to ensuring that we fund the right research to address the priorities that have been identified.

To do this, we’re going to need more partnerships than ever before! For example, in October we’re running a workshop on CF and ageing. We’re keen to engage researchers outside the field of CF to help us understand the topic and the challenges that need to be addressed.

What are the main challenges you’ve faced in partnerships and how did you overcome them?

We had a really fantastic response from people with CF and their families about their research priorities. Because of this, it took us a lot longer analyse the data than we anticipated at the beginning of the project. We addressed this by amending the timelines, so we could ensure we didn’t overlook anyone’s point of view.

If you could give one tip to another charity entering a similar partnership, what would it be?

I’d definitely recommend having the support of an objective third party. The JLA team were fantastic at keeping us on track, summarising discussions and spotting when we were heading off at tangents!

If your charity has a partnership you’d like to share via this blog series, we want to hear from you! Get in touch with Ellen at [email protected]. Read other blogs in the series on our Festival of Partnerships: blogs page.

Images:
Belinda Cupid, Senior Impact Adviser at Cystic Fibrosis Trust
The people holding up the research priorities represent all the different groups of people who were involved, from people with CF, parents, members of the committee, healthcare professionals and researchers.
Screenshot from the final JLA workshop.