How did you become a member of SIB?
I've been interested in CF research for a number of years and find out a lot online, especially through the CF community on Twitter, the Cystic Fibrosis Trust and researchers. A good friend of mine Laura, who also has CF, was already on SIB and mentioned there was an opening for a patient representative just over a year ago. I got in touch, and after several conversations with the Trust’s Head of Research, I agreed to join the Strategy Implementation Board.
Why is it important for SIB to represent different parts of the CF community?
The experience of having and living with CF is very different from what it is to have clinical or research expertise. As a person with CF on the Board, my role is to add the real-life experience; it particularly helps with understanding the value and impact that research may bring to people with cystic fibrosis.
How often do you meet?
We meet twice a year – once to review and find new applications, and then again to review how previously funded SRCs are getting on. In between these meetings, we receive the applications to review and assess too.
What will be happening at today’s meeting?
We are reviewing the latest round of full applications for funding. It’s the culmination of months of work: from the team of researchers applying for funding and the research team at the Trust, to the external research experts and the Board as well. Each funding application has been assessed by a process called ‘peer review’, a system for independently scrutinising scientific research. The Trust is a member of the Association of Medical Research Charities (AMRC) and they review our peer review processes every five years.
At the meeting, the Board will be discussing the comments from the peer review assessment and adding in their own expertise. If anyone on the Board is an any way involved in the application, they won’t take part in the discussion due to conflicts of interest (and will leave the call during the discussion). We discuss the merits and failings of each application with great rigour. Later on, after we’ve gone through each application in turn, we will discuss all of the applications together and make a recommendation on which ones should be funded by the Trust.
What’s it like trying to understand the science?
Sometimes the conversations can be quite detailed and specific – I think that's important as we are funding medical research! – but there is a good effort to help "non-science" members to understand. For example, all applications must have a lay, non-scientific summary, and we can ask questions or clarify. It's quite an open and safe environment, and the researchers are also aware that their work has to be understood by the CF community. The Trust is very committed to making research more accessible to the whole CF community and I believe it's vital for everyone to be able to understand what brilliant things scientists are thinking about.
Do you always agree?
Everyone on the board is extremely passionate and recognises the importance of which SRCs are funded. This means there are often disagreements and going back over aspects of an application in depth to really assess the detail. What has struck me is how much everyone really cares about people with CF and really wants to fund the best research. The debates are interesting, and everyone gets to add their view.
At the end of the meeting, the Board will have agreed on a list of applications that they have ranked and will recommend for funding. The Trust’s decision to fund, based on the ranking, is centred around the budget that has been allocated for research funding and the recommendations from the Strategy Implementation Board. Applications approved for funding are scheduled to begin in the autumn of 2021.
More information on our funding and governance processes is available on our website.