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.

Links & Resources:

• Kalvin Hopper: https://www.linkedin.com/in/kalvinhopper/?originalSubdomain=au
• Dudeability, Kalvin’s YouTube channel: https://www.youtube.com/@dudeability
• Emma Weatherley: https://www.linkedin.com/in/emma-weatherley-29530a58/
• YouTube video: Cure FSHD Clinical Trial Passport Program: https://www.youtube.com/watch?v=ty-6KQGm14Q
• Muscular Dystrophy Australia: https://www.linkedin.com/company/muscular-dystrophy-australia/
• Muscular Dystrophy NSW: https://www.linkedin.com/company/muscular-dystrophy-nsw/
• Muscular Dystrophy Queensland: https://www.linkedin.com/company/mdq/
• Neuromuscular WA: https://www.linkedin.com/company/neuromuscular-wa/
• Genetic Alliance Australia: https://www.linkedin.com/company/genetic-alliance-australia/
• Rare Voices Australia: https://www.linkedin.com/company/rare-voices-australia/
• Springbok Analytics: https://www.linkedin.com/company/springbok-analytics/posts/?feedView=all
• Medicines Australia: https://www.linkedin.com/company/medicines-australia/posts/?feedView=all
• WeGuide: https://www.linkedin.com/company/weguidehealth/

"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.

This show 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. Learn more at www.talkinghealthtech.com/podcast/network.

In this episode of Consumer Health Partnerships, we speak with MND Ambassador and Chair of MND Research Collective Lived Experience, Jane Simpson and Julie Labra, Project Manager - National Lived Experience Model at MND Australia, about their National Motor Neurone Disease Lived Experience Network, a pioneering initiative aimed at bridging the gap between professionals in the healthcare sector and those with lived experience of Motor Neurone Disease (MND).

Jane and Julie discuss the importance of incorporating lived experience into healthcare projects, sharing insights from the development and implementation of the Lived Experience Network. They explore the challenges faced by MND patients and caregivers, the project's co-design process, and the profound impact on both consumers and professionals engaged in the network.

Key Takeaways:

• Empowering Collaboration: The National MND Lived Experience Network connects people with lived experience to professionals, fostering collaboration.
• Shaping Healthcare Priorities: Lived experience brings a valuable perspective to healthcare projects, often highlighting priorities that differ from those of healthcare professionals.
• Effective Engagement: Lived experience participants require clear objectives, sensitivity to time commitments, and consideration of individual circumstances and abilities.
• Enhancing Projects: Co-design processes benefit projects by incorporating diverse input, leading to more effective and inclusive outcomes.
• Shifting Culture: The initiative has shifted the culture in organisations like MND Australia and FightMND with valuing consumer involvement in core business activities.

Links & Resources:

• MND Australia: https://www.linkedin.com/company/mnd-australia/
• National MND Lived Experience Network: https://www.mndaustralia.org.au/get-involved/national-mnd-lived-experience-network
• Let's Talk MND Podcast (hosted by Jane Simpson): https://open.spotify.com/show/4WmtdSBhyuFX4ZB1Auzq2O?si=bb34bacdce3f404a
• FightMND: https://www.linkedin.com/company/fightmnd/posts/?feedView=all
• Checklist to Support Meaningful Engagement with People Impacted by MND:

https://www.mndaustralia.org.au/getmedia/a7d57b53-6030-4c46-a727-698550e35a25/Checklist-for-engaging-with-the-LEN.pdf

• Motor Neurone Disease (MND) Association (International):

https://www.linkedin.com/company/mndassociation/

“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.

This show 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. Learn more at www.talkinghealthtech.com/podcast/network.

In this episode of Consumer Health Partnerships, we speak with Debra Letica, former carer and citizen leader, and Dr Viktoria Stein from the International Foundation for Integrated Care, about the Citizens Leadership Research Project. They highlight the significant role of citizen leaders in co-creating integrated care systems and the impact of genuinely involving consumers in health care reform.

Debra shares her journey of becoming a citizen leader and how her personal experiences as a carer helped her advocate for better healthcare systems. Dr Viktoria Stein explains the origins of the Citizen Leadership Research Project, and their move to involve citizen leaders from around the globe. Both discuss the importance of genuine partnerships between health professionals and consumers, offering insights into how these relationships can enhance care delivery.

Key Takeaways:

• Importance of Inclusion: Including citizen leaders from the very start of the project to shape priorities and questions.
• Diverse Perspectives: Recognise that different communities want and need to be involved in various ways.
• Mentorship Value: Mentors play a crucial role in building confidence and guiding new citizen leaders.
• Collaborative Networks: Leverage existing networks and international collaborations to find and engage citizen leaders.
• Shared Challenges: Citizen leaders worldwide face similar barriers and motivations, reinforcing the universal need for integrated, consumer-driven care.

Links & Resources:

• Debra Letica: https://www.linkedin.com/in/debra-l-14b79b74/
• Viktoria Stein: https://www.linkedin.com/in/vikstein/
• Citizen Leadership Research: https://www.birmingham.ac.uk/research/health-and-social-care-leadership/research/citizen-leadership
• RACP: https://www.linkedin.com/company/royal-australasian-college-of-physicians/posts/?feedView=all
• International Journal of Integrated Care: https://ijic.org/
• Consumer Health Forum Canberra (National Body) : https://www.linkedin.com/company/consumers-health-forum/posts/?feedView=all

• Health Consumer Council WA : https://www.linkedin.com/company/healthconsumerscouncil/posts/?feedView=all
• Health Consumers NSW: https://www.linkedin.com/company/health-consumers-nsw/posts/?feedView=all
• Carers WA: https://www.linkedin.com/company/carers-wa/posts/?feedView=all
• Carers Australia: https://www.linkedin.com/company/carers-australia/posts/?feedView=all

“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.

This show 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. Learn more at www.talkinghealthtech.com/podcast/network.