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.