Earlier today Xeni posted an incredible and haunting piece that captures her diagnostic process. Chronicling her initial Yelp search for a mammography center, to her nervous use of twitter in a waiting room, Xeni shares her patient experience through the eyes of a true digital-citizen.
Her account of the medical and non-medical electronic tools around her is particularly interesting. Unceremonious pictures of her ultrasound printouts and GE scanning device are coupled with an emotional description of her attempt to dial a loved one on her iPhone mid-bioposy. But (like all great Xeni pieces) the story doesn’t get lost or hid behind empty technical jargon despite her appreciation of the technology around her.
So is Xeni’s work an “e-patient” post? It’s difficult to say.
Xeni is the quintessential example of growing group of people that are “e” (empowered / electronic) by default. We often hear of patients turning to technology for the first time as a result of a catastrophic diagnosis. But there are many people, like Xeni, who already use the internet as a key piece of their everyday life.
In a chapter titled Sharing Anchors Community, Clay Shirky writes about the temporary identities assumed by those who regularly share information online explaining how latent groups can have a significant impact where a formalized groups might struggle. In this case, Xeni may not (yet) have assumed the identity of an e-patient. But her post highlights the potential support a latent group of digital-citizens like her might offer the more established e-Patient Movement.
We thank Xeni for publicly sharing this raw and painful process, challenging us to think outside the box and continuing to be a digital leader even in her darkest moments. Our thoughts are with you, Madam Boing.