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"Research is more meaningful and more effective when it is shaped alongside the people it is intended to benefit"
Governance and oversight
The CF Community Advisory Board (or CF-CAB for short) is an important part of the CF Lung Health Network’s oversight and governance. It is a group of people with CF and their loved ones who help shape the research within the network.
They support the Network by reviewing progress updates from the researchers and discussing their results. We met some of the members of the CF-CAB to hear about why they wanted to get involved.
Anna Maria
My late husband Tim had CF. We met at university when we were 20 and we were together for 17 years. For him, it was antimicrobial resistance that was the problem – the antibiotics didn't work anymore. We need better research into microbiology and sharing people’s stories is one way to get the public interested in this topic. He always supported any research project that was out there, and I want to carry that on.
Anwen
I'm a mum to a seven-year-old girl with CF. In her lifetime I've seen such a transformation in terms of the treatments offered and I’ve learned a lot during that journey. I want to give back and to be part of that kind of research.
Megan
I have a one-year-old son with CF. He has been born in a time where there is so much research and so much development and that’s great. It’s something I want to be involved in. We can offer insights on the practicalities of doing the studies, for example ‘how is my one year old son going to do that?!’ We can also shape the information about the studies that is shared with the CF community.
Inclusion of the CF CAB in the network is so important as it brings lived experience to the heart of research, ensuring studies and communications are relevant, accessible and hopeful for people and families living with CF. By working with researchers, community members help shape science that is important to them and ensures clearer messaging and real-world impact.
Claire Water, PPIE Partnerships Manager at the Trust
Shaping research within the Innovation Hubs
Across the Innovation Hubs, there are studies happening on everything from understanding exacerbations (flare ups of infections) to using phage therapy as treatments for infections. Laura and Ailsa are helping to shape this research by sharing their lived experiences.
“This research is deeply personal to me” – Laura’s story
Professor Alex Horsley invited me to get involved in the Pulse-CF Innovation Hub to ensure that the patient voice is included in discussions, decision-making and the direction of the Hub’s work. I’m a member of the Pulse-CF Innovation Hub Steering Committee and Chair of its Patient Advisory Group.
The Pulse-CF Innovation Hub is looking to better understand the different causes of exacerbations, and why people respond differently to treatment.
Living with CF involves a lot of uncertainty and ongoing management, it affects day-to-day activities in ways that people don’t always see. I experience multiple exacerbations a year and these have both short and long-term effects that significantly impact my life. This research is deeply personal to me.
Being part of the Pulse-CF Innovation Hub gives me the opportunity to use that experience constructively. It is important that lived experience is not just heard, but genuinely considered when planning research and innovation. For the future, I hope to see continued progress that translates more quickly into practical improvements in care – and that patient involvement remains central in shaping that progress.
“I’m excited to be able to combine my passion for scientific communication with my lived experience of CF” – Ailsa’s story
My CF centre approached me about getting involved in this research programme and I gladly accepted. It’s quite rare to find yourself in a situation where your professional and personal lives intersect and complement each other.
As a member of the Trailfinder-CF Innovation Hub, I’m excited to be able to combine my passion for scientific communication with my lived experience of CF. Actively engaging with researchers and collaborating with them from the earliest stages, will help ensure the solutions meet the needs and expectations of patients. Collaborations like these make sure patient voice is a part of the conversation and shows respect for the different perspectives and expertise that come from personal experience of CF.
The Trailfinder-CF Innovation Hub aims to develop phage therapy, a novel treatment approach for CF infections, and help to better tailor existing treatments for each infection and each person.
I know from personal experience that chest infections in CF can be hard to manage and often mean time off work or school, missing out on some of the things you want to do and reducing quality of life for people living with CF. I hope that this research will help to bring more and better treatment options for lung infections, helping people with CF to do the things they want for longer.
People with lived experience bring invaluable insight to research, and we want to see them meaningfully involved from the earliest stages. The CF Lung Health Network is a powerful example of how this expertise can be embedded at both project and programme level, helping research better reflect real needs and make a genuine difference for people with CF.
Natasha Ratcliffe, Principal, Patient Engagement at LifeArc
Involving people with lived experience is now recognised by many as an essential part of translating promising findings from the lab into real-world impact. The Charities Research Involvement Group, together with LifeArc and the Translating and Accelerating Research (TAR) Network, recently published a report sharing examples of how involvement is shaping translational research, including top tips for researchers and organisations.