A journey map examines a person’s needs, processes they follow and perceptions they have throughout their healthcare journey. In 2023, MDC created our first journey map which was specifically for Canadians affected by myasthenia gravis (MG), a rare autoimmune neuromuscular condition. To inform all journey maps, we ask individuals affected by the disorder, across Canada, to participate in surveys, interviews and roundtable discussions related to their experiences with their diagnosis, treatment, information provided and day-to-day life.
We then collect a comprehensive view of the journey by illustrating their clinical, attitudinal, cost and informational journey including time to diagnosis, diagnostic experience, treatment, emotions during each stage of their journey, and pressure points.
Myasthenia Gravis
We summarized the results from the MG Journey Mapping Project in this webinar.
The infographic below illustrates a high-level summary of the MG patient journey throughout five phases and outlines the top ten overarching themes.
The map created for the Canadian MG Journey highlights barriers, gaps and opportunities to improve the experiences of those affected. The results of this study are currently being leveraged to influence public policies and healthcare system planning; and, used as Canadian evidence to improve access and decisions related to clinical trials, drugs and therapies. If you are interested in learning more about action items for influencing change in the Canadian MG Journey Map or discussing the results further, contact research@muscle.ca.
Nemaline Myopathy
We’re currently looking for Canadians affected by nemaline myopathy to participate in our next journey mapping project. We’re looking to learn about Canadians’ experiences from symptom onset to diagnosis and day to day life. So tell us, what does life with nemaline myopathy in Canada look like for you? Please contact research@muscle.ca to share your story.
There will be opportunities for participation in surveys and roundtable discussions about diagnosis, treatment, information provided and your lives today. From this work, we hope to highlight barriers, gaps and opportunities to improve the journey for Canadians with nemaline myopathy. Our goal is for this work to inform policy changes that can positively affect the healthcare journey for those affected.
To participate, please email us at research@muscle.ca or call 1-800-567-2873 ext 1114.
Contact Us
If you are interested in participating in journey mapping projects or have questions, please email us at research@muscle.ca or call 1-800-567-2873 ext 1114.