Why Empowering Patients’ Voices is so Important for Understanding Patients’ Needs – BRP member Karen, participated in a Trailblazer webinar to share her experiences so that patients’ preferences and barriers for participating in clinical trials can be heard and understood.
Karen was diagnosed with eosinophilic asthma in 2021 and is currently participating in an asthma clinical trial through the British Research Panel. Having always lived an active and healthy life, this diagnosis came as shock and has drastically changed her life.
“I’d never had asthma in my life, and I was super fit. I went to the gym and ran every day and did karate three times a week. Now I just feel like a blob because of all the steroids,” explains Karen.
As a result of her experiences with this life changing condition, she wanted to participate in the clinical trial to help others like her. Additionally, through joining the webinar she hoped to be a voice for these people and share the perspective of someone living with this condition and how it affects their daily life and trial participation.
Becoming a Voice for Patients
The Trailblazer webinar was co-hosted by Greenphire and CISCRP and aimed to understand patients’ preferences and barriers for participating in clinical trials. With Karen being a part of the panel, it was an opportunity for the patient voice to be heard.
“The main reason why I took part in this webinar was to be a voice for people with conditions like mine,” shared Karen.
Sharing how much value patient insight brings, Karen added:
I think it’s important that the patients’ voice is heard, because sometimes you don’t understand things unless it happens to you. You can step into other people’s shoes, but when you know how it feels, the thoughts and feelings of participating, it’s important that you’re able to speak up about it.
At the British Research Panel, we work to provide a platform for patients to share their opinions. The keen interest of our members to participate in research and share their voices is not only inspiring, but also a driving factor to make research more patient focused.
A Snapshot of Karen’s Experience
Not only did Karen lose her job due to her condition, she also hasn’t been on public transport since the pandemic through fear of catching Covid.
Among other things, these factors influence her opinions on logistics in clinical trials such as reimbursements, communication and transport services, making her contributions to the webinar insightful into a patients’ perspective.
“The financial compensation I receive wouldn’t have covered a day of my work, so that could be a deciding factor for those people who don’t have the flexibility that I do,” explains Karen when addressing the importance of financial compensation.
Continuing to reflect on the patient perspective, she added: “Communication during a trial is so important for reassurance. Sometimes, you just need that ear to say this is what’s happening and I’m quite frightened right now.”
To see the full webinar and hear Karen’s input, you can take a look here: Trailblazer Webinar
Placing Patients at the Centre of our Focus
One of the core values of the BRP is empowering patients’ voices, so that patients’ needs can be understood, influencing future research. The success of this webinar and willingness from our members to take part has highlighted how they add value to research, as well as helping patients to feel heard.
Head of Partnerships, Silvia Hurst reflects on the power of such webinars:
Webinars are a great way of sharing research-related patient insights with various stakeholders while providing patients with the opportunity to interact directly with us and ask questions. At the British Research Panel, we advocate for patient-centricity, so it made perfect sense to hear from one of our members.
“Karen’s concrete, real-life account of her experiences was a highly valuable look into what it means to be an asthma patient participating in a trial,” she continues.
We are proud to give patients the opportunity to speak up and we continue to strive towards making research more patient focused. Hearing how the British Research Panel’s work has benefitted our members is also extremely rewarding.
“It’s thanks to guys like you that research is being done so that better medications can be found,” shares Karen.
Tell us in the comments below, how you think research can be improved!
Written by
Eloise Healey