From Patient Stories to Clinical Solutions: A Journey in FSHD Patient Empowerment
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=auDudeability, Kalvin’s YouTube channel: https://www.youtube.com/@dudeabilityEmma Weatherley: https://www.linkedin.com/in/emma-weatherley-29530a58/YouTube video: Cure FSHD Clinical Trial Passport Program: https://www.youtube.com/watch?v=ty-6KQGm14QMuscular 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=allMedicines Australia: https://www.linkedin.com/company/medicines-australia/posts/?feedView=allWeGuide: 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.
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49:42
Building Bridges: The Impact of the MND Lived Experience Network in Australia
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-networkLet'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=allChecklist 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.pdfMotor 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.
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39:27
The Citizen Leadership Research Project: Debra Letica and Dr Viktoria Stein on Integrated Care
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-leadershipRACP: https://www.linkedin.com/company/royal-australasian-college-of-physicians/posts/?feedView=allInternational Journal of Integrated Care: https://ijic.org/Consumer Health Forum Canberra (National Body) : https://www.linkedin.com/company/consumers-health-forum/posts/?feedView=allHealth Consumer Council WA : https://www.linkedin.com/company/healthconsumerscouncil/posts/?feedView=allHealth Consumers NSW: https://www.linkedin.com/company/health-consumers-nsw/posts/?feedView=allCarers WA: https://www.linkedin.com/company/carers-wa/posts/?feedView=allCarers 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.
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48:30
Consumer-Centred Digital Health: Belinda Swan and Harry Iles-Mann's Approach to My Health Record
In this episode of Consumer Health Partnerships, we speak with Belinda Swan from the Australian Government Department of Health and Aged Care and Harry Iles-Mann, Consumer Representative Advisor to the Digital Health Branch who discuss their My Health Record project and the importance of consumer partnerships in digital health initiatives.Belinda Swan sheds light on the My Health Record project exploring the project's goals to modernise the system, improve health interoperability, and encourage greater use by healthcare providers and consumers. Harry Iles-Mann discusses his journey from healthcare consumer to advisor, sharing insights on consumer advocacy and the significance of lived experience in shaping digital health solutions. They delve into how incorporating consumers' perspectives leads to more effective healthcare policies and practices.Key Takeaways:My Health Record Overview: My Health Record is Australia's consumer-controlled electronic health record system designed to improve access to and sharing of health information.Consumer Involvement: Engaging consumers in the early stages of healthcare projects ensures that solutions are genuinely aligned with their needs.Partnership Approach: The collaboration between the Digital Health Branch and consumer representatives like Harry Iles-Mann fosters a culture of trust and innovation in healthcare.Practical Strategies: Highlighting the practical aspects of embedding consumers in health projects, such as flexible work arrangements and ensuring secure documentation processes.Advocacy and Impact: Harry's role has significantly influenced how the Digital Health Branch approaches consumer partnerships, aiming for policies that reflect real consumer needs.Links & Resources:Belinda Swan: https://www.linkedin.com/in/belinda-swan-84983b10a/Harry Iles-Mann: https://www.linkedin.com/in/harryilesmann/ Electronic health records: https://www.health.gov.au/topics/health-technologies-and-digital-health/about/electronic-health-records Use of My Health Record data: https://www.health.gov.au/topics/health-technologies-and-digital-health/what-we-do/use-of-my-health-record-data Framework to guide the secondary use of My Health Record system data: https://www.health.gov.au/resources/publications/framework-to-guide-the-secondary-use-of-my-health-record-system-data?language=en "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 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...
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30:31
Collaborative Efforts in Preterm Birth Prevention with Melanie McKenzie and Dr Chayel Klein
In this episode of Consumer Health Partnerships, we speak with Melanie McKenzie from Harrison's Little Wings and Dr Chayel Klein an Obstetrician at the Royal Brisbane and Women's Hospital, on the Preterm Birth Prevention Collaborative. Melanie McKenzie and Dr Chayel Klein explored the collaborative efforts to reduce preterm and early term births through consumer engagement and innovative practice changes.Along with the importance of involving consumer representatives in healthcare projects to have patient-focused outcomes, they also discussed the challenges and successes of the Royal Brisbane and Women's Hospital's initiative, the impact of the discontinuation of the Foetal Fibronectin test, and the broader systemic issues in women’s health. Key Takeaways:Consumer involvement: Involving consumer representatives prioritises patient needs and personal experiences in healthcare projects.Effective communication: Early and consistent communication with consumers is crucial for effective feedback and engagement.Clear project goals: Clear project goals and remuneration helps new participants feel valued and committed to the project.Test discontinuation impact: The discontinuation of the Foetal Fibronectin test could impact rural services significantly.Partnership and goal-setting: Effective partnerships with consumer organisations and realistic goal-setting are essential for successful healthcare projects and achieving desired outcomes.Links & Resources:Melanie McKenzie: https://www.linkedin.com/in/melanie-mckenzie-320b8542/?originalSubdomain=auNational Preterm Birth Prevention collaboration: https://women.wcha.asn.au/collaborate/breakthrough-collaboratives/the-national-preterm-birth-prevention-collaborative/Harrison's Little Wings: https://harrisonslittlewings.org.au/staff-member/melanie-mckenzie/"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 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.
Welcome to "Consumer Health Partnerships”, the podcast where healthcare meets human care. Our show is a compelling journey into the heart of human-centred reform, showcasing the power of collaboration between consumers and healthcare professionals to forge a more empathetic and effective health system in Australia.
Who should tune in? This podcast is crafted for digital health professionals, clinicians, practice owners, and anyone invested in the future of healthcare. Whether you’re a seasoned practitioner or a newcomer to the field, our stories will provide you with the inspiration and practical advice needed to elevate consumer health experiences and outcomes.
Why should you listen? "Consumer Health Partnerships" isn't just another medical podcast; it's a beacon for change in an industry on the brink of transformation. In each episode, we highlight real-world examples of how partnerships between patients and providers lead to groundbreaking improvements in care delivery. Our conversations are more than discussions; they are narratives of change, lessons in empathy, and blueprints for action.
Our guests are the changemakers – the healthcare professionals, innovators, and patient advocates who are paving the way for a new era of healthcare. They share not just their successes, but their challenges and the lessons learned along the way. You'll hear inspiring tales of transformation, from small-scale practice shifts to large systemic reforms, all with the common thread of patient partnership.
We also delve into the nitty-gritty of implementing change, with practical strategies on how to effectively engage with patients, integrate their feedback into care models, and measure the outcomes that truly matter. The podcast provides a platform for you to learn, engage, and be part of a community committed to making healthcare more inclusive, effective, and compassionate.
"Consumer Health Partnerships" is more than just a learning resource; it's a movement towards a value-led healthcare approach. By listening, you’ll gain insights into the PX Strategy methodology, understand the PX Maturity Indicator Assessment, and be equipped to incorporate these tools into your practice.
Join us as we explore the future of healthcare in Australia and be part of the revolution that is setting up our health system for success. Subscribe to "Consumer Health Partnerships" to ensure you never miss an episode that could redefine the way you think about health care and patient engagement.
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