A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers.
This was no academic exercise. It was as if I had painted their portrait and shown it with confidence to other audiences, but that day I’d hear from the portrait’s subjects. Would they see the likeness?
I prepare carefully for every speech, but I knew that the Moebius Syndrome conference audience would be different. One quarter of the attendees would have full facial paralysis. They can’t smile, frown, or in some cases, blink. I wondered what it would be like to speak to a potentially stony-faced audience.
I looked online at pictures of people with Moebius. I watched videos, too, getting used to seeing people talk without moving their mouths, like master ventriloquists.
There would also be a lot of parents and grandparents of kids with Moebius in attendance. Pew Internet’s most recent health report focused on caregivers and their voices were fresh in my mind. I haven’t seen a more passionate patient advocate than a mom or dad whose child is facing a serious health issue.
In my remarks, I told them that I am always looking for what Tim O’Reilly calls “alpha geeks” – people who are forging new paths that others will follow. His alpha geeks are computer hackers, people who create new tools and work-arounds with software and hardware.
I found my alpha geeks among people living with rare disease because they are health care hackers. They have been forced to navigate the maze of health care in new and interesting ways, creating tools, and making connections.
People living with Moebius Syndrome know instinctively what most people had to learn: on the internet, the expression of your spirit has nothing to do with the expression on your face.
After spending time looking at patterns in rare-disease communities, I looked for similar patterns in the general population. They are there. Other people are behind people with rare conditions, but they’re on the same path. And it’s a path leading to what I call peer-to-peer health care.
If you would like to read more from my remarks, please see: Health Care Hackers
My slides are also available.
The bottom line: It was an extraordinary experience.
I spend my days analyzing data, hoping that I’m getting it right, wondering if the portrait I’m painting is accurate . This community’s affirmation that yes, I got it right, is incredibly meaningful to me.
I urge other researchers to find a way to present their data directly to the people affected by or part of the work. We all have something to learn. We all have something to teach.
For further reading, please see: