The Kind of Selfie That Saves Lives
I am not a fan of selfies. I view them as the epitome of our age’s selfish abomination. That is unless I’m taking one of myself or my friends on a personal occasion of course; Then it is extremely cool and I know that because a large statistically irrelevant number of people will Like it on my Facebook or Twitter profile.
Last week a gentleman by the name of Steven Keating convinced me that the problem is not with the concept itself, but perhaps the way we approach our new abilities to document data about ourselves. The Selfie concept, as it turned out, literally saved Steven’s life and made him a phenomenon in the world of healthcare innovation.
Steven’s talk at Exponential Medicine 2015
It was the end of a very full mind-bending day at Exponential Medicine, when I was sitting in the Press room wrapping up work and I was told that I could interview Steven Keating who had a slot free up. I Googled him and it seemed like he was my age, with double the number of titles. He is a PhD student at MIT doing a lot of amazing projects involving additive fabrication (including manufacturing using a blend of biology and 3D printing techniques).
I was immediately intrigued and grabbed the interview spot.
A few minutes later, Steven walks in with a large suitcase full of 3D printed models of the human skull, tiny brain cut sections and a bunch of other toys. After a warm smiling welcome, Steven put all his objects on the desk and asked me:
“So what would you like to talk about?”
“Bio-fabrication” I quickly said, eyeing all the printed toys he had on the table.
“Finally! Someone wants to talk about what I do!” Steven sounded puzzled and excited “Everyone else just wants to hear my story”
“Wait, what is your story?”
I was glad I asked because in the next 15 minutes, Steven recounted the almost miraculous history behind his fight against a frontal brain cancer. A story that gave me the most profound insight about what the future of healthcare could be, from a guy who has no healthcare experience at all.
In 2007, curiosity led Steven to volunteer for an fMRI study. In addition to the $50 incentive, Steven also got his data back which showed a faint greyish area on his left lobe that remained constant when it was checked again 3 years later.
In the summer of 2014, Steven noticed a faint vinegar smell. After realizing that it may be his smell center in his brain, he gets a scan a month later and a whopping large Astrocytoma tumor aggressively occupied about 10% of his brain!
To make sense of this, he printed models of his skull, plastic replicas of his tumor, and got himself very engaged in understanding his condition and explaining it to other people. Driven by this idea, Steven sought to gather as much data as he could from clinical data, participating in research studies, and generating his own data. Data ranging from: Having his brain surgery recorded, doing a microbiome (gut bacteria) analysis before, during and after chemo, and even 2HG spectroscopy studies to see if the tumor is still active.
Steven posted all of that on his website, and used this data to make his own decisions as a patient, and communicate it to others to advance care and research. He quickly became a patient advocate speaking to others going through similar cancer conditions.
Watch the following quick 30 second clip of Steven’s full blown medical “Selfie” from the outside of his brain, into his skull, to the histopathology of the tumor and down to a graphical representation of the point mutation which caused the cancer.
This is quite phenomenal. Take a moment to consider this: What might your version of a Selfie look like?
“The process of getting this data was extremely hard, even though any of my doctors can have a nice representation of all my data through the click of a button. On the other hand, I needed to ask, wait and then I get it in the form of CDs and PDFs in the mail.” Steven told me sounding frustrated, “I mean, I don’t even have a CD player!”.
That video really got me thinking, because it was a run through of anatomy, physiology, surgery, histopathology and genetics all through a personalized lens, which brought the case to life. What if I were taught in medical school that way? I thought. What if patients are educated with such granularity about their conditions? Would it not be a richer more engaging experience?
This is what motivates Steven to go and talk to these patients, to help them gather and make sense of their own data. He is also combining it with his passion for fabrication, by working with his research colleagues at the MIT Media Lab, the Wyss Institute, and with his hospital on the idea of printing these 3D models with variable gradient material properties to be able to bring a real feel of the body part being discussed.
Steven is very optimistic and has commented on the specific part of the new Meaningful Use (MU) guidelines requiring all Electronic Medical Records to have an API by 2018, which means that theoretically there will be a standard for medical data upon which we can build apps and share as we wish.
In Steven I found a role-model for two futuristic personas: A curious patient that drives healthcare decisions by data, and a young maker that can inspire healthcare design and engagement.
Even though the average patient does not have Steven’s tools or knowledge, getting all this data should not be challenging to begin with. The best way we can push healthcare to provide us with more of our own data, is by simply being as curious about our medical “Selfies” as we are about the number of likes our social media selfies are getting. One of them can save us, while the other enslaves us.
I then interviewed Steven about the future of Bio-fabrication but that is a different upcoming article. Stay tuned to Health 2.0 News!
Watch Steven’s full TED talk below.