How is the digital age changing patient-hood?
I came across the story of Maya Nieder, and her parents, Dana and Dave, on Bloomberg Businessweek - but they’ve been out there for a while, in a bunch of different ways.
The Businessweek article was most interesting to me - the Nieders have been working with a researcher at Washington University in St. Louis to “crowd fund” gene mapping for their daughter, soliciting donations online so they could diagnose Maya. That’s because she was born with what seem to be inborn developmental delays, and no one knows why. Her exact array of symptoms have simply never been seen before.
Last month, that crowdfunded project bore fruit. The necessary money was raised - much of it from online donations - and when scientists mapped Maya’s genome, they found the gene they suspect is behind her illness. It won’t help her be treated - at least not yet - but now her parents have a way to frame their daughter’s disease.
The Nieders are fierce fighters for their daughter. Before this latest bit of news, they’d gotten some coverage in Time magazine for their battle to keep an app available to them via the Apple Store - it helped Maya communicate (she can’t talk), when other, more traditional technology couldn’t
All of which raises the question of how this digital era is changing how we think about disease, as patients and as doctors. The Nieders promoted their stories via the web (specifically, Dana’s blog, Uncommon Sense). Their doctor has been a TED Fellow, and is funding his genomic research online in conjunction with grant money - actively marketing his patients’ stories via the web.
Will these shifts be good for everyone? Certainly, it’s always been true that the loudest patients got the most care. But with the internet, those patients, and their doctors, have been given a megaphone. The shifts at work will be interesting to see play out.