The Educated Patient

Taking a Risk with a Chronic Condition

An improved communication model

I just returned from the MitNET 2019 Conference in Toronto. What an amazing event! My research on an improved communication model is picking up speed! It feels like the last three years of hard work are finally starting to pay off. I met a lot of Canadian researchers and patients working to advance the research in mitochondrial disease. There were also some researchers that came in from the UK and the US. I still felt like I was sitting with the home team crowd. Maybe the weather had something to do with it?

The poster won a $500 award! Although the only poster in the patient category, it’s still very encouraging to be recognized. I hope that next year there are more patient entries in this category. I also connected with Blaine Penny, the co-founder and CEO of MitoCanada and was asked to speak at the Next MitoNET Conference in Ottawa. Very honoured and still more encouragement on this path.


Having the patients and the researchers together in the same room is a benefit to sparking some real discussion. We all share some insight and experience whether as a researcher, a patient, or a caregiver. Each of has has something to contribute to the larger discussion of how to best manage mitochondrial disease. Each of us deserves the respect of being heard, which is not the same as agreement. For me, because of my conflict resolution background, I get curious and excited by conflict. I welcome it. To me that’s the creative space where new ideas come forward. Conflict to me means change is coming and I really want change.

Improved communication model picking up steam

I kind of think of the communication challenge between patients and researchers as two sides of the same coin. If you only look at the coin face down, you can only see one side of the discussion at a time. I want to put the discussion on edge and spin it. I want researchers and patients to work together in a new and unexpected way because we need new and unexpected innovations in mitochondrial disease research. Each of us needs a better understanding of the interests that motivate the other side. That’s where I plan to devote my energy going forward. I want to create a new and more collaborative communication model in this space. And fingers crossed, it might be this new communication model is getting some attention!

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