 Stay tuned. We're actually going to have the world premiere launch of the open patient Which is a documentary film produced by Red Hat and their open-source series So please stay tuned to watch that and we'll be back with lots more coverage here of the cube from Red Hat Summit 2016 And I think we're recording here This message is for myself And friends or family maybe but hopefully just for myself My name is Stephen Keating and going into brain surgery tomorrow and in case I change at all I wanted to provide my future self with my present selves thoughts So I've always been interested in data and learning about things I used to take apart GPS devices and strap them to my ankle and Capture my daily routes and look at that data and try to figure out what it meant and Throughout university, I would always try to participate in lots of studies one to help science But also because I was curious about it all I saw a opportunity to do a research scan So I volunteered and I wanted to see what the data would be like and I asked to see it And they showed me and they said by the way, we actually found a small abnormality here They didn't know what the abnormality was But there wasn't a huge amount of concern because I wasn't symptomatic in any way. So what about my life? came down to MIT and then Last year in the summer in 2014. I started to smell a very faint vinegar smell for just a few seconds a day And I went actually back to that original data set of the scan and saw what the abnormality was and realized That's near the smell center of my brain I pushed to have another scan done because of the previous findings And I really didn't think that the scan was going to show anything because the doctors weren't concerned they booked it for a month later and Usually that the people running the scan will let you leave and let the doctor explain the results But when I had the scan the person running the scan said you're not leaving you need to stay in the hospital You have a massive tumor. I mean, I don't necessarily know I know that I'm not a typical patient I think everyone's trying to do what they can to stay alive The part that I was very interested in was trying to collect as much data as I could to make the best decision possible There's nothing better than a really engaged patient Medicine's not easy. It's still an art and a science Making the right choices is complicated not only for the patient but also for the clinician and a frank and open discourse About that makes all the difference in the world patients Don't always have access to the medical information that they need to really join the conversation And that's what I've been sharing which is this question How come as a patient we're last in line to her own data? How come my doctors and my university researchers can see my tumor genome and I can't? Why are there so many barriers for for getting access to my own data? No one really sees the problems involved with getting access to your own data until you're in the hot seat In July 2008 just a week after my 29th birthday. I was diagnosed with a slow growing but malignant brain cancer And immediately admitted me to the hospital and schedules me to have brain surgery the following week And then the tumor grew back within six months and so I was all Cruel at all. I guess I don't have a job anymore and I'm gonna have another brain surgery and now dealing with cancer is my life And this is my job and maybe because I saw it as this is my job Everything that I had in my toolbox of skill sets related to my job. I applied towards it And my toolbox of skill sets was I'm gonna communicate. I'm gonna write. I'm gonna design cool graphics I'm gonna make little memes. I'm gonna make a video. I'm gonna do those things So I write a blog called the Liz army and it's just basically about a person who's living with brain cancer As a layperson who's gone through this cancer experience I definitely can tell you for a fact that other patients Are interested in connecting with somebody like me that they can share their story who can understand what they're going through And I don't expect people to go to read my blog to get advice on how they should cure their disease But it is A legitimate a very legitimate source of what an actual patient experience is I was just out there being as honest as possible to let other people know what this experience is like And I think that's one of the things people appreciate most um, you know the first thing I think of when I when I think of Seeing the effect she's had on other people um, we went to a young adult it's basically like cancer con And there was this girl emily and she just came up and like gave lis the biggest hug And was just so excited to meet lis like came up to me gave me a hug. I was like, oh my god I've read all about you And uh, you know just to see that she could have that kind of impact on people. I think that was pretty amazing Thank you so much for this beautiful blog. My husband was diagnosed with a glioblastoma grade four 27 months ago And he's doing great Well pretty much great aside from the whole brain cancer thing Ha ha your voice and that of those like you has been missing from this conversation Thanks for all you do for us If you were to get diagnosed with something uh today and you would want to access the system the same way I do We don't all have the same tools. It's not the same outside of my health system It's not the same throughout the state. It's not the same throughout the country. There is no One open electronic medical record system that everyone knows So for me in cancer There's not a roadmap at all right now. I can do many different types of clinical trials Chemotherapies different types of radiation So how do they vary in terms of liability and risk? What is the patient experience like right? Maybe I don't care that it's this one treatment has a 1 higher chance of survival If it involves terrible misery and pain for the next six months of my life, right? So how come we can't Have that data in an easy to digest format that we can share and use to make proper decisions I'm like well, I have this data and this is to help the good of mankind and it if I could just like Quantify myself my way to a cure. I don't I didn't see that being the right phrase so I remembered the phrase open source I was like I I just want to open source my quantified self and share whatever I have to offer to hopefully get to something greater that could help people diagnosed one day It actually helped me make medical uh decision. So being at mit I actually had the incredible fortune of having an amazing advisor Who helped me find a surgeon? Basically we put my data online and sent it around and said Which surgical studio and surgeon has the most experience with this specific condition? So putting that data online being able to share it was able to actually figure out which surgeon to use Yeah, so this is the surgery footage. It's 10 hours. This is a one minute version of it. It's sped up Yeah, there's 10 hours in one minute And this isn't actually cutting out my brain And kind of my skull and here's them opening up my brain tissue there and You can hear me talking here I don't know if you could hear that but I just said this is a pretty cool experience I guess I started thinking about patients having access to data Sort of as a byproduct of having a lot of conversations with patients and with clinicians over the years And I've heard the doctors in particular Talk about The idea of actually sharing notes with patients, you know when I suggested it to my colleagues Half of them thought I'd lost it and half of them thought it was kind of a neat idea Open notes sort of spraying out of that parallel story from both clinicians and patients It's basically the notion we should share equally. We should be totally transparent with what we're thinking It's the patient's body. It's the patient's mind and it's up to us to understand that for them to understand the way We're thinking for us to get together to share decisions to share plans. And that's what open notes is the beginning of We wanted to offer ready access To patients for those things that we write about them the law Gives them that access but we've made it as difficult as humanly possible for them to get that And so it's been helpful for you to see your notes Oh, it's fantastic. It's everything's right there that you said to me. Okay. I said awesome Because sometimes I miss you know with the cochlear implant that makes it difficult sometimes to hear time with me Unfortunately, it's very short and patients will have questions or want clarification on items that we may not have time to get through in a visit And so it's it's a vital importance in that way Like I said, I don't always catch everything that she's saying to me and I could call it up again And then remember what it was I wanted to discuss with her the next time I came and it was right there Patients told us that they felt much more in control of their care that they felt much better educated They felt much better prepared And particularly thrilling was the fact that they were taking their medicines better at the end of the study with a 12 month commitment the doctors had the option to stop Not one of the participating doctors turned it off So if you want to play devil's advocate because a lot I get asked these questions a lot of the time Is too much information possible, right? What about privacy concerns? What about health insurance concerns? Um, and these are all valid questions Privacy in itself is a very complicated topic If you're healthy you worry about privacy if you're sick Or if you're in the emergency room, you could give a damn about privacy You just want everyone to have access to everything right away so you can be helped. So it's a complicated dynamic I think it's first of all important to remember that all patients are not the same And that we should allow a variance depending on the patient's choice If you don't want to share anything, of course, you don't need to share anything If you want to share everything you should be able to As long as the patient is able to understand the liabilities they are taking they should be able to make those decisions And we think full transparency Is the platform for better care for engaging patients much more actively in their care And there's no reason why it can't be a two-way street like that instead of a paternalistic view where it's all top down We should have bottom-up communication from the patient side, right? You should be able to not just receive data from the hospital, you should be able to provide it You know far better than I what happened to you in the last month. Why shouldn't you write it down? Why shouldn't that become part of the record? That holds I think frankly greater promise For patient engagement than just plain reading it That's all on the horizon How to get the health care system to acknowledge that benefit and somehow help Elevate and and empower patients to be open about it being willing to share their data for research purposes in some capacity They recognize that could be a benefit Then that just opens the door for us to work together and somehow Benefit patients and people being diagnosed with things in the future Why can't we have a you know an app where you can say yeah 3d print my skull or donate this blood to research And they're going to make me an author on this paper instead of me having to Create my own website and put all that data there. There needs to be a more standard way. Why can't we have a share button? By opening the conversation about my story There are many people who have Told me how much it has been of value to them whether they are an individual and they're going through this experience And they're saying hey, that's exactly how I feel or thanks for giving me a heads up that this is down the line Or you're a caregiver going thanks for letting me know that You know, this is probably what my husband's saying and he he's not sharing with me One of the most powerful comments I've ever received is from a parent and their child can't verbalize or tell them What it is is going on in their mind They feel like by reading my words that this may be what their child could say if they could speak There's not many benefits to having a brain tumor One is that I have a good excuse if I forget something. I just say they must have cut that part out I've done that many times um And another one is that you get a very interesting perspective on life And so I I sent out a final email to all my friends and family right before the surgery I wanted to read a couple of those last few sentences from that email Perspective is everything and switching shoes yields the most powerful thoughts Family and friends are what remain when the world blurs gather data as often as possible and share with the world It could save your life one day I never would have gone to the neurological folks if I didn't have the open data from the research scan Uh, and then the very last sentence of that email now Was the world is a lovely splendid and fascinating place But most of all to me it's beautifully curious Said you'd always be my right blood Circulate the right love Giving me your right love said you'd always be my