This article is more than 3 months old
“It's really inspiring how the CF community come together”
How would you describe ‘PPIE’?
PPIE stands for Patient and Public Involvement and Engagement, and it consists of two key areas. Involvement is working with people who have lived experience of a condition (in this case members of the CF community) to help shape how research is carried out. This could be by providing input on research plans and design, reviewing research information materials, or helping to interpret and disseminate results. Engagement is sharing information about research to people with CF and the general public. This can happen in a range of different ways, such as displays at science festivals, organising community events (eg CF LIVE), and sharing lay summaries of research findings. These activities help to increase understanding, awareness, and interest in the topic.
How did you get interested in this area?
I studied Human Biology and Science Communication at university. My Science Communication Masters covered all of the areas that you could do in the field, and public engagement really appealed to me. Since then I’ve worked in range of different places like science centres and museums, universities and educational charities. My current role is a bit different. I’m really excited to be working on this project. It’s really inspiring how the CF community come together, even though they can’t meet each other directly.
Why do you think it’s important to involve and engage people with CF in research?
People with CF are experts in their own condition and have those insights of living with it day-to-day. They’re the people who are going to benefit, or deal with any burdens and side effects of treatments. It’s also really important to understand how CF impacts not just them, but their families, their work, their social and personal lives, everything.
When we’re thinking about engaging with young people, they’re going to be the CF community of the future. They’ll be the people who might take some of these new treatments, so it’s important we talk to them.
It’s also important to talk to people who may have been taking antibiotics for decades, and experienced lots of side effects as a result. Understanding why a treatment is not effective, isn’t tolerable, or why it stops working helps us understand what the alternative might look like.
Tell us about some of the activities you’ve done so far.
One key research area within the Trailfinder-CF Innovation Hub is phage therapy, which is a potential new approach for treating chronic respiratory infections. I’ve interviewed people with CF about their experiences of having long term lung infections and trying to access phage therapy. Their comments have changed our plans about how we talk about phage therapy, so everyone can understand it.
Another thing I’ve worked on in collaboration between the Trailfinder-CF Innovation Hub and the CF AMR Syndicate, is the development of a Target Product Profile – also known as TPP – for phage therapy for people with CF. The goal is to create a document that will help guide researchers making new phage therapies in the future.
We worked closely with Cystic Fibrosis Trust to involve members of the CF community in focus groups and one-to-one conversations, to see what they think, what their priorities and preferences are, and hear their experiences of things like antibiotics and side effects of antibiotic treatments. Their feedback will impact what’s included in the TPP.
What involvement and engagement activities are coming up?
We’re going to be doing more science festivals and events in the coming year. We’re also just at the start of a really exciting project to co-create podcast episodes with children and young people who have CF.
Another thing in the pipeline, following on from conversations with people with CF, is creating patient information sheets and clinician information sheets to improve communication about phage therapy. We want to improve understanding across the board of what phage is. That way if people want to access phage in the future, people will already have the knowledge of what it is.
What would you say to a researcher considering how to involve people with lived experience?
Just have an open mind and give it a go! You might be surprised by what can come out of it. Good involvement is bringing people along for the whole research journey, from the very beginning when thinking about the research design and what questions.
Guidance for researchers
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.
Our e-newsletter
Sign up to our free newsletter and be the first to hear about the latest CF research breakthroughs, stories from our community and how you can unite for a life unlimited with us.