I love this. And I’m honored to be a part. I love that it captures the value of rapidly prototyping, testing, and adapting — of sculpting, so to speak — especially for something as enormous and daunting as health care.

Here’s the thing I’m struggling with a bit. I don’t see patients and families as being spectators and coming out to cheer or gawk at the change taking place. I think we’re the bold, brash, change-making hackers too.

We usually do it on a personal scale for our own health (at least initially), but we’re thinking up new solutions, doing things a different and better way, bucking the system and prodding it to change all the time. I’d argue that ingenuity comes not from outsider status, but from almost the very opposite — a powerful combination of desperation, drive and blinders.

When I think about my foundation’s work to drive research on my rare, understudied CF mutation—we’re hacking the system because the system wasn’t working for us and I don’t have the time to wait for the system to catch up. We forced change and assumed the role of the Mikes and Mary Anns because we had to. We realized that standing on the sidelines — even cheering — never would have gotten us there in time.

    Emily Kramer-Golinkoff

    Written by

    Co-Founder @EmsEntourage4CF, Project Manager @PennSoMeLab, Patient Advocate, Digital Health Enthusiast, Bioethicist, Stanford #MedX ePatient, To-Do List Writer