The Educated Patient

Taking a Risk with a Chronic Condition

MitoNet 2019

Stunning news. I am travelling next month to the MitoNet 2019 Conference in Toronto, ON, Canada. They contacted me to tell me the UMDF Poster presented in Washington DC In June has been accepted. It’s unusual to present a poster twice but I am bringing a very different research focus to the poster this time around.

I plan to focus on the process and not the content of the research collaboration. Without spending too much time on the result, I want to discuss how the collaboration evolved, what the challenges were, and how it led to an unexpectedly successful outcome.

I rejected the standard of care options because I couldn’t face further surgery for my MSL. Instead, I looked for alternatives. I couldn’t find any templates to help navigate this unusual research situation. My medical team couldn’t help much because I was operating outside the standard of care. I want to develop a template for other teams based on our experience.

Currently, there aren’t enough rare disease patients to study. An ethical model for enhanced risk taking with an educated patient makes sense to me, especially when there are no good medical options. We just need a good template to guide the collaboration design.

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