In typical nerd fashion, I spend far too much time contemplating the inadequacies of systems. Perhaps my mental wanderings happen because of all the time I spend fighting for breaths, climbing up Swiss ‘hills’. I spend much of my time raging because I want to learn best practices about living and managing my dystonia but am prevented because the system for connecting intervention to outcome data in the medical record STINKS. Even more disappointing is the method for assessing dystonia patient outcomes, the TWISTR scoring, which is a rudimentary physician assessment. It’s the equivalent of measuring the growth changes of an amoeba using a meter stick.
During one of my many hospital stays as part of my DBS surgery, my roommate was a lovely women who had Parkinson’s Disease. She had to titrate off her medications for tests and was so frustrated with all the excess movement in her body and even worse, her challenges with bladder and bowel control. We shared different supportive treatments we have tried, both of us searching for solutions in how to LIVE with a movement disorder. I need to emphasize this, as someone with unmet medical need, just because doctors have no more solutions to offer, it doesn’t change our needs. It doesn’t make us go – oh ok, I guess I will just accept this half existence. Our desire to LIVE FULLY in the sunshine remains and that currently means we will go beyond our doctors and start experimenting in our N-of-One ways. Unfortunately, with all this N-of-One trial and error, knowledge sharing is impossible.
If I were to let myself dream of the unreachable knowledge in existence, I would want a system that allows consenting of patients to share their medical record and beyond data. To enable profiles where we can connect with each other and with researchers who need critical data, all with privacy protections. To expand beyond the basic medical record and truly build knowledge on how to LIVE with these conditions. It would need to be a precompetitive space where collaboration of drug developers provides them the values of: enabling CDP strategy, clinical trial recruitment, real world evidence and disease biology research. Privacy can be protected at different levels decided by a patient based on direct consent. For someone like me, I would be happily known by name to dystonia researchers. They create the hope for living in the sunshine. The least I can share is my data and experiences to help them learn faster.
Everything I am dreaming about is possible with today’s technology and privacy regulations. Building our collective knowledge is possible if we put aside egos and turf wars and really focus on what matters – changing lives through innovation and enabling us all to have a little bit of sunshine in our lives.