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.

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...

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=au
• National 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.

In this episode of Consumer Health Partnerships, we speak with Anja Christoffersen from Champion Health Agency and Dr. Jeremy Kerr from QUT Design Lab about the importance and application of co-design in the healthcare sector.

Anja and Jeremy share their extensive experience in co-designing health services and projects, highlighting the need for genuine consumer collaboration. Discussing their respective roles and achievements, including Jeremy's project on resources for health professionals and Anja's integrated design methods. They aim to demystify co-design, explaining its methods and the significance of creative and empathetic collaboration. As well as addressing the benefits and challenges involved in implementing co-design practices in healthcare environments.

Key Takeaways:

• Participation Importance: Highlighting that co-design needs practical participation to fully understand its value.
• Co-Design Methods: Various methods like journey mapping and empathy mapping are critical in understanding lived and professional experiences.
• Starting Small: They recommend starting small with co-design methods, focusing on comfort and practicality.
• Framework Adaptability: Emphasising that co-design frameworks must be adaptable to different contexts and needs.
• Creative Collaboration: Successful co-design relies on creativity and empathetic collaboration, with no predetermined outcomes.

Links & Resources:

• Anja Christoffersen: https://www.linkedin.com/in/anja-christoffersen-999446152/
• Jeremy Kerr: https://www.qut.edu.au/about/our-people/academic-profiles/jeremy.kerr
• QUT, School of Design: https://www.qut.edu.au/about/faculty-of-creative-industries-education-social-justice/school-of-design
• Design for Health: https://research.qut.edu.au/designlab/programs/

References mentioned by Jeremy during the podcast:

• Link for the book via Australian distributor (cheaper than international publishers): https://www.hachette.com.au/jeremy-kerr/the-art-of-co-design-solving-problems-through-creative-collaboration
• Eating disorder co-design podcast link (In Full Bloom): https://open.spotify.com/show/6uhfJm0F2oUFOEdW1Y4K1W (it’s on Apple podcasts too!)

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.

In this episode of Consumer Health Partnerships, we speak with Tracey Johnson (CEO of Inala Primary Care), Dr Suzanne Williams (Senior Clinician at Inala Primary Care), and Veronica (a longstanding patient of Inala Primary Care) about the importance of collaboration and communication in healthcare settings, particularly in the context of patient-clinician partnerships.

Discussing the challenges and solutions in fostering effective communication between hospitals and general practitioners (GPs) and the vital role of patient-clinician relationships in achieving positive health outcomes. Veronica shares her patient perspective on continuity of care and the importance of mutual respect. Dr Suzanne Williams highlights instances where strong partnerships have significantly improved mental health outcomes. Tracey Johnson provides insights into system-level improvements and the need for better recognition and funding for general practices.

Key Takeaways:

• Importance of Asking Questions: They emphasise always asking questions to avoid assumptions in medical care.
• Positive Patient Outcomes: Effective patient-clinician partnerships lead to better mental health and reduced serious issues.
• Economic Efficiency: HIghlighting the need for better recognition and funding for general practices compared to hospital care.
• Listening to patients matters: Assumptions about patient needs and preferences should be avoided; always ask for patient input.
• Building trust through support: Patient recognition and encouragement are crucial for fostering trust and compliance with healthcare regimens.
• Communication Challenges: They point out the communication gap between hospitals and GPs and the need for more respect for patient knowledge.

Links & Resources:

• Tracey Johnson: https://www.linkedin.com/in/atraceyjohnson/
• Inala Primary Care: https://inalaprimarycare.org.au/

“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.

In this episode of Consumer Health Partnerships, we speak with Clayton Fletcher, Consumer Carer Senior Consultant, and Emma Hart, the Director of Nursing from Child and Youth Mental Health Service at Children's Health Queensland, about the impact and importance of co-design in creating effective mental health care systems.

Emma and Clayton discuss the success of their Jacaranda co-design project, which has had a profound influence on both the physical design of healthcare facilities and the delivery of services. Sharing insights into the collaborative processes involving consumers, carers, and clinicians that underpin their work, and highlight the importance of mutual respect, active feedback, and the inclusion of lived experiences in developing a care model. While also recounting memorable experiences and feedback that have shaped their current approach.

Key Takeaways:

• Recovery-focused building designs: The Jacaranda co-design project has fundamentally influenced building designs and services, focusing on recovery and community.
• Facilitating youth feedback: Clayton Fletcher's flexible role includes observing, engaging in, and facilitating feedback-driven group activities designed with young people.
• Lived experiences in healthcare: Emma Hart stresses the importance of embedding lived experiences into healthcare services to ensure they meet diverse needs.
• Holistic Co-design care: They both underscore the value of co-design by involving all stakeholders from the project's beginning to develop a holistic care model.
• Respect and recognition in teams: Respect and mutual recognition within a multidisciplinary team are crucial for effective and innovative healthcare delivery.

Links & Resources:

• Emma Hart: https://www.linkedin.com/in/emma-hart-48797aa5/
• Jacaranda Place:

1. https://www.childrens.health.qld.gov.au/services/locations/jacaranda-place
2. https://www.childrens.health.qld.gov.au/resources/health-services/welcome-to-jacaranda-place

"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.