Consumer Health Partnerships
The podcast where health care meets human care.
Episode 10:
From Patient Stories to Clinical Solutions: A Journey in FSHD Patient Empowerment
with
Emma Weatherley and Kalvin Hopper
In this episode of Consumer Health Partnerships, we speak with Emma Weatherley, Managing Director of FSHD Global Research Foundation, and Kalvin Hopper, an advocate and world-ranked wheelchair tennis player, about the beginning and impact of the CURE FSHD registry, a groundbreaking patient-led initiative designed to support clinical trials for Facioscapulohumeral Muscular Dystrophy.
They delve into the challenges faced by people living with FSHD, the innovative approaches adopted to overcome these hurdles, and the strategic partnerships that have been formed to make the registry a reality. Emma and Kalvin explore the project's patient-centric approach, highlighting the significance of lived experiences in shaping effective healthcare solutions. They also touched on the journey of developing a comprehensive clinical trial passport programme and the anticipated positive outcomes for the FSHD community.
Key Takeaways:
-
- The CURE FSHD registry is a world-first initiative designed to empower those with FSHD to become clinical trial ready
- The registry facilitates a ‘clinical trial passport’ approach, making it easier for patients to participate in upcoming trials
- Patient involvement from the outset ensures the registry meets the real needs of people with FSHD, enhancing user experience
- Emma emphasises the importance of lived experience in healthcare design and decision-making for genuine engagement
- The initiative is set to bring more clinical trials to Australia, offering new hope and treatment possibilities for the FSHD community.
Listen to Consumer Health Podcasts on Spotify and Apple Podcasts.
Click to listen to this episode on your favourite podcast player.
Episode Links & Further Reading...
- Connect with Kalvin Hopper on LinkedIn
- Visit Dudeability - Kalvin’s YouTube channel
- Connect with Emma Weatherley on LinkedIn
- YouTube video: Cure FSHD Clinical Trial Passport Program
- Muscular Dystrophy Australia
- Muscular Dystrophy NSW
- Muscular Dystrophy Queensland
- Neuromuscular WA
- Genetic Alliance Australia
- Rare Voices Australia
- Springbok Analytics
- Medicines Australia
- WeGuide
Ready to start making real PX-led change in your practice?
Check out our range of patient experience (PX) improvement learning resources and courses.
Receive 20% off the full price when you quote PODCAST at the checkout!
Never miss an episode of Consumer Health Partnerships!
Enter your details below to join our PX Factor e-newsletter list and get all the latest news on patient experience improvement, consumer engagement and alerts about new episodes of the Consumer Health Partnerships podcast.
Consumer Health Partnerships is a podcast for healthcare stakeholders that spotlights the synergistic power of partnering with consumers to share a human-centred health system. We share inspiring stories and practical strategies from healthcare professionals at the forefront of embracing a human-centred approach to patient experience and a patient-centred approach to patient experience and co-design. We are redefining care by respecting their patients’ equal place in conversations about their health. Click here to listen to discover more episodes.
The Consumer Health Partnerships podcast is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Click here to learn more.
Let's get social!
Follow Patient Experience Agency on LinkedIn and Facebook
