Transcript

Can Selfies Save You? | Steven Keating | TEDxYYC

[Music] we create View and share data every day and an easy way to see this is with photos so for example if you're curious what it looks like up here I can actually take a photo so everybody do like a goofy pose or wave or something like that ready so there's an event I documented it and I can share it now that was a selfie photo that I took and a lot of people think selfies are selfish right but what if in the future could sharing our selfies actually save us that's what we be talking about today and in terms of sticking with photos this is the most important photo of the presentation for me it's my family and we can use photos to remember important events like this but but also silly and embarrassing things for example these are the best graduate photos I have so my house mate it's pretty bad and we can actually use data so we can pull out a face we can actually put it on t-shirts for April fools so yes [Applause] jackm and so we share data every day and we interact with it to satisfy our curiosity but what about our Medical data do you have you ever accessed or used or shared your medical data do you even know what data the hospitals have on you well for me this is what my medical photo looked like last summer it's an extremely large cancerous brain tumor actually took up about 10% of my brain and this is actually a one to one size um copy of that tumor and yes it's in my frontal left lobe and a lot of people think that's where the personality is kept so if I'm boring today it's because they cut out the exciting Parts okay all right so let's we we're keeping me on a tight time here so I'm going to cruise um I'm going to go back to the initial photo and actually show you what it looks like as a medical selfie so we zoom in there's my repaired skull to my brain to the MRI scans and down to my actual surgery this is my brain if we go down to the cellular level we can actually get down and see the idh1 mutant protein and that's right here and the genetic code behind it there's a single point mutation it's a g to an a that's what drove the primary mutation behind my tumor so could sharing our medical selfies actually save us there's huge benefits for patients for hospitals for medical science as a whole and I'm going to tell you today why I think the future is in patient Centric Healthcare and why if we share our selfies it could save us but first let me rewind and explain why I'm here um I'm a very curious fellow and even when growing up we're we're all curious when we're young and I was even looking at my brain when I was 10 years old all right that Curiosity took me to MIT where I'm currently a PhD candidate and I work under Professor Nar oxman and David Wallace and I work on how to make things so I work on all kinds of things ranging from buildings to bacteria this is actually a 3D printer for a house so we can actually print with not concrete and insulation but we can also print with metal we can print with glass we can actually get down to the micro scale and actually use it to control biology so we can 3D print microfluidics and we can house specialized bacteria in them and that's where the future is it's designing biology so that's where my curiosity took me professionally but that's not what this talk is about this is a personal story so I'm a huge dork and a lot of people in this audience know that and I always try to collect as much data especially on myself and so in 2007 I was curious about my brain and I volunteered for a research study where they scanned me and the scan was fine but when we looked at the data there was something else an abnormality if you look at the top right corner you can see it's a little bit lighter we didn't know what that was I had it rechecked by doctors in 2007 and 2010 no real changes I continued living my life I didn't have symptoms I felt normal then last summer I started to smell a very faint vinegar smell for a few seconds a day and after about the third day I remembered that abnormality is kind of close to my smell Center so I went to the doctors asked for a rescan they weren't concerned they booked it for a month later this is what it looked like so three weeks later I had it surgically removed by an amazing medical team uh led by Dr Eno kiyoka at Bri and Women's Hospital and get this it was an awake 10-hour brain surgery so they kept me awake so that I could talk like this with my head open so that The Language Center wouldn't be damaged so because I want to know what's happened to me and collect data I asked if it could be videotaped and they said sure So I'm gonna ask you guys are you curious to view it all right good I'm glad I'm glad good so close your eyes if this is too graphic because it is going to be graphic all right this is a 10-hour brain surgery in 30 seconds I'm awake they're going to make the primary cut and they're going to have me talking and if you listen carefully you'll hear how I met my incredible girlfriend with my head open ready talk to us again9 and here you can see the rest of the surgery and it was honestly the most surreal experience to feel them inside the Machinery of my brain while I was lying there awake [Applause] that that Applause is for the doctors because I really didn't do anything I just lay there that's for the doctors this was my brain before and after and because it was such an incredible medical team I was very lucky actually as well 3 days later I was back on campus um I had side effects terrible sleep loss I've lost a good chunk of my sense of smell but doing well and I I'm on I did proton radiation at Mass General Hospital and I followed up and I'm on a year of Cho therapy my next round of chemo starts on Monday so it's a very real and current thing for me but what did I learn and this is you know as a d as a dork this is what I like so I do dove into the data and I'm not going to dive into the details but it was over a 100 gigabytes of data it was not easy to access it was not easy to understand or to share but it had incredible benefits for example I actually got to access my brain tumor and I'm going to show you this is actually a slice of my tumor I was able to actually cut it stain it and image it see my own cancer now going down to the cellular level and yes this is a self Fe um we looking at the genetic U mutations behind is actually very valuable I can then start to know what clinical trials for new inhibitor drugs might work for my specific mutations I can make personalized medical decisions and if I can share this data other patients and other doctors can learn what decisions I made and the results that occurred they can then plan out their own map all right so I could also take this data and I could visualize it in interesting ways so 3D printing um I was able actually in the proton accelerator to take selfies using protons which are fired at over 600 million kilm per hour at my face and with multimaterial 3D printing we could actually look at new surgical tools imagine in the future medical students could actually dissect themselves right it's crazy and this right here is actually my skull and this is actually a one to one scale representation and if you want to see how the surgery went they basically pulled out this part of the skull and then they pulled out this tumor over 10 hours so imagine if you go to the hospital you get your X-rays and you get this if you pay your $50 you know the the right I made these as a Christmas tree or for my family it was pretty funny uh so the data was fascinating and it was very interesting and actually very incredibly important for medical decisions but the most important lesson I learned was a question and it was why do patients have the least access to their own data we're put last in line I found there's barriers everywhere even simple ones like MRIs comes in dozens of CDs without tools to interact can share or use the data is very complex hundreds of pages of technical reports and forms hospitals can't even communicate with each other due to the complexity many times and there's many legal gray zones of what I can access and what I can share for example I still don't have access to my whole genome sequence so there was a study done by my hospital and by my University and they asked me if I would donate part of my brain tumor tissue to get it sequenced to help science of course course I was thrilled and there's the on the informed consent form it listed a way for patients to actually request data it said you could so I was thrilled and right now my doctors and my University colleagues can see my genome but I still can I'm still waiting uh it's been a two-month legal process I'm still waiting for the answer why can they see my future and not me why can't I share that with the world to help improve medical science so I wanted to share the data and I couldn't find many good tools online so I put it on a website and this was originally for friends and family many who are in this audience and it was great I was able to tell people what was going on and it actually resulted in an MIT Professor inviting me to give a patient perspective talk during one of his lectures the response was incredible and it actually resulted in a New York Times article being published on April 1st which coincidentally is one of my favorite holidays it's true and it resulted in over a thousand emails that day thousands more in the weeks to follow and they were from patients from doctors and from researchers and they all said this matters so I did 49 days of chemo and protons and on my first day after treatment I got invited to President Obama's Precision medicine announcements and I'll be very honest I was very worried about setting off the Geer counters in the way to the White House because I went straight from the hospital to the White House on my first day post treatment I had to course document with another terribly embarrassing selfie and yes I was very excited right it's pretty amazing but it encouraged me to keep asking this question why can't we have a hospital share button and it wouldn't just benefit me it would actually benefit friends and family with understanding getting second opinions doctors could have engaged patients which results in better care scientists could have data with context and hospitals could use the feedback to optimize we could have input and output we could make Healthcare a two-way street to show you that my partial brain is not completely crazy there's some precedents open Notes was a project done in three major US hospitals they gave patients full access to doctor's notes and in in the course of one year they found 99% wanted continued access four out of five would choose a future provider based on having access and 70% reported taking better care of themselves all of these hospitals expanded these programs and none of the doctors dropped out what about sharing would you share and it could be anything it could be blood work would you share your x-rays well if we look at Apple research kit which is a recent platform an open platform launched to share data with medical researchers 50,000 users joined in the first week over 75% opted in to share their data with any credible researcher so if the tools are simple they're interactive people will share but I always get ask this question is too much data damaging and yes all data has liabilities and it's extremely important that privacy is kept under patient control if you don't want to share anything then you don't share anything but if you want to access if you want to use if you want to share your data we need a voice we need patients as partners so we need access that's patient Centric and clear the first step is access we can push for an open API an API is an application programming interface what that is is like a key to your data which where you can then send it to third parties and actually control it and if this happens we could then have Google Maps for health we could have Facebook for health we could have Dropbox for health we could use capitalism to democratize medical data and the possibilities are incredible we could cure diseases by sharing and for you personally your watch could diagnose you could save your life and from Medical Science we're not talking a million person study we're talking a billion and personally data generates support and this is often lost on researchers but I can tell you from personal experience support give me the most important medicine a lot of friends and family audience and they they all sent videos right before my surgery and this is what I got to see including some of my favorite TV shows you'll get a kick out of this happy brain surgery Steve Steve it's Jimmy Kimmel we hope you get better t-shirts these number one and number two Steve dance pool time to and you get there happy brain surgery to you happy brain surgery to you so I need to thank everybody and I wanted to end with my family dancing because their dancing during the toughest times kept me dancing during protons so it's not over to start juggling my brain tumors this kill time there's one thing to take away it's to stay curious stay curious about yourself ask your doctor about your data think about sharing it think about sharing the idea of sharing it and I'm going to end on a very very personal note but first I want to thank people who saved my life friends and family medical doctors the groups are working towards patient data access the researchers I work with and the references I'm going to end I'm G to end on a very personal statement so put yourselves in my shoe shoes you're normal then they tell you in 3 weeks they're going to cut out 10% of your brain I hardest part for me was telling friends and family so I a final email before the surgery these are the last three sentences from that email perspective is everything and switching choose yields the most powerful thoughts family and friends many who are here are what remains when the world blurs I'm going to let you read that one on your own Jesus Christ [Applause] [Music] [Applause] w [Applause] there's one more to go and this was the final sentence in that email the world is a lovely Splendid and fascinating place but most of all to me it's beautifully curious so thank you and to this audience with friends and family thank you for everything w [Applause]