Back to browse newsQ1. What is your role in the European Cystic Fibrosis Society: Clinical Trial Network in order to build a story around your unique contribution
Kate: I have worked at Queen’s with the European Cystic Fibrosis Society: Clinical Trial Network (ECFS-CTN) since 2015. Working as a project manager for their network, I coordinate trial and clinical projects across a wide variety of research areas within CF, to standardise practice across the 57 European cystic fibrosis centres.
Q2. Why is it essential to include PPI in your research?
Kate: PPI is an integral part of our research. Working with patients and carers helps us to improve our research and make it truly meaningful from the patients’ perspective. With the support of the Queen’s University Engaged Research Seed Fund, we worked with CF Europe, the European federation of patient organisations, on a collaborative project to improve CF research communication. We established a glossary of CF-related scientific terms that can be used in lay materials including clinical trial summary documents, patient information leaflets and plain language summaries of scientific reviews.
Q3. What did you or your team learn from the process of working with the PPI Contributors?
Kate: Working with PPI contributors taught us several key lessons! Jade, one of our PPI panel taught us many useful tips, namely, the patient voice must be included at every stage of a project, not just at the start and the end! Continuous feedback and reassessment of a project allows improvement and refinement. Having a broad involvement pool allows a wide variety of perspectives to be included. Fundamental to a successful partnership is the skill of ‘listening’ – really listening. She also highlighted the importance of being mindful of expert patients’ medical conditions, ensuring that meetings are accessible to all, allowing virtual attendance if needed, building in regular breaks or writing any information in simple, clear language. Be prepared for the truth and expect your perspective to shift.
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