 We have 12.50 a.m. Which means it's 2.50 p.m. here Should we go ahead and get started? Okay Let's get your seat. Okay So my name is Anne Gentel. I'm here with Justin Shepard This is our story about taking action when faced with a rather scary disease Diabetes and we're gonna walk you through that a little bit, but here we are at the OpenStack Summit welcome You can get in touch with us on Twitter if you have any questions We'll have our email addresses as well at the end and I work at Rackspace I've worked on OpenStack for five years now, and I'm a principal engineer And this is sort of a step outside of my typical role in OpenStack for me This is talking about what it's like to be a parent of a kid with type 1 diabetes so we both have different approaches to our medical monitoring solution and Come to find out we could talk to each other about what we've been doing here so This is my son Evan Right after he was diagnosed with type 1 diabetes He was 11 at the time and that was a year ago so he's 12 years old now and One of the first questions I get when I talk to anybody about Finding out your kids diagnosed with something is how did you know? And so in my case he ate a pixie stick and so that is a three-foot-long cylinder of sugar And he reacted oddly to it by kind of he kind of fell asleep in the car next to me And you know I kind of looked at him and and I said we're gonna go to the doctor or get this checked out So you know you have these blood tests and you find out that some of his numbers were out of range And our story was After we found out the second test was out of range our pediatrician called and said you have to take Evan to the emergency room And and it was a total shock. I have a sister with type 1 diabetes I knew the signs but none of them were what we were seeing with Evan But this is when we found out you take your son to the emergency room because it's Hossable that his blood sugar levels have gotten so high that they're dangerous For him and that he actually needs insulin to survive Type 1 means that your body doesn't make enough insulin type 2 means you don't use the insulin effectively, so there's two basic types and Because your body requires insulin when you're type 1 you're basically learning how to dose yourself based on these numbers that you're getting from monitoring your blood glucose and So the reasons why you want to take care of this is because if you give too much Insulin and they go into low blood sugar. It can actually cause seizures or coma or even death. It's very serious If they have too little insulin, which is what happens when they're first diagnosed They're actually so dehydrated and they can't get any sugar out of the blood And so it can cause kidney disease nerve eye damage all of the things that you hear about For why you want to manage this very carefully? Now Justin's story is a little different, so I'll hand it over to him to tell his So this is my beautiful wife. She got diagnosed with type 1 diabetes at 25 Technically she didn't get diagnosed with type 1. She actually got misdiagnosed as a type 2 diabetic And as I was talking about earlier a type 1 is insulin dependent They have to have insulin type 2 you can actually treat with Pills that remove a little bit of sugar out of your blood or you can handle it more so with Exercise and diet you can actually keep control of it. Well, when you're type 1 that doesn't actually help at all And so we ended up going into the hospital. My wife got super sick two years and us being married and We had to take her to the emergency room and the doctors said that she was hours away from organ failure She was diabetic ketone acidosis, which is where your blood turns acidic on yourself And so we spent a week in the critical care unit So that's kind of how we started this You know spent the next 10 years learning how to control her diabetes it takes Quite a commitment out of both partners or the whole family is it maybe You almost are both diabetic at that point all of your conversations revolve around her blood sugar Are you too high or you too low? When did you last eat? Do I need to get you some sugar? Are you starting to pass out in the middle of the night? Do I need to get you some orange juice? Let's take care of all of your blood glucose. So that becomes a big part of your life Excuse me so now we've been doing this for a few years. We started to get control of it We are being able to keep her blood sugars in very good control There's a test called an a1c which measures your three month blood sugar average And so you're looking for a number under seven and so she was right at seven six point nine So she was doing very well keeping your control of it and you start adding on different devices, right? So I think I showed on this picture on the on my wife's shoulder. She has a continuous glucose monitor This is a device that injects a metal pin into your skin and actually senses your interstitial fluid and can determine your blood sugar It takes readings every five minutes. So she has that on her. It's Transmitting to a little iPod looking device that has a reading on it that tells how high or high low and which way it's trending So that whenever you're getting ready to take action on a hot blood sugar, you know, am I coming down from a high? Am I on my way up to a high? Instead before all that you were just taking finger pricks And so you had no idea of what was happening before that you don't know what the roller coaster looks like before So you're just kind of treating it based off of one data point this way you actually start to get a trend Around this time we decided that we want to have kids So it took us about seven or eight years to get to that point So we're about nine years into it at this point and whenever you're going to have a child for a diabetic wife Whenever she's getting pregnant, she has to maintain massive control of her blood sugar Normal numbers that Anne was showing were 70 to 180 as kind of being a wide range of accept good acceptable numbers When you're getting trying to get pregnant you actually have to keep it inside of the 80 120 at all times And so you really are starting to act at a hundred you're starting to go a little high You have thresholds and you're starting to give yourself insulin you start going down to 90 You're starting to try and give yourself sugar. So you have this real narrow band that you're trying to do So my wife did wonderful at this. She actually got her a1c down to a 6.2 or a 6.1 Which is incredibly low number doing wonderful and then we come into Paris OpenStack Summit, so I have to go out of the country My wife is back at home and pregnant at this point. So we have gotten pregnant. She is maintaining her blood sugar Fun story whenever you get pregnant your child is diabetic while she's in that while he's in the womb He's completely dependent on the mother for regulating all his blood sugar So now you have two bodies messing with your blood sugars and all the time and whenever you eat you get half of your food Going to the baby or more so it's not quite getting into your blood sugar your bloodstream the same way your kids taking some of it So I have to go out to Paris and I need a way to be able to kind of keep track of her blood sugar So that I can call her in the middle of night and make sure if stuff's going too low or if she starts going too low And she doesn't respond I've got a friend that lives down the street that I can kind of call him up at three in the morning And would you please rush in and go check on my wife because she might be in a coma or whatever I need to do And so this is kind of the dilemma I found myself in while pregnant So we started looking around and my wife used the dexcom cgms and we started investigating And that product has a thing called dexcom share What this allows you to do is to take your data and the sensor reads it off of your cgms Sends it to this little iPod device the iPod device connects to your phone by a Bluetooth So it transmits all of your readings and then your phone uploads all that data to the cloud And then other people can actually subscribe to that so you can say honey I want you to be able to check my blood sugar. I can get access to it and start watching it in real time So this is the proprietary solution. Obviously. I mean, I think this solution cost about four hundred dollars Plus a monthly fee but it allowed me to go into Paris and I'm up most of the time when she's in the middle of night And she's kind of sleeping or she's awake while I'm sleeping so she can control it But I'm able to check on her while she's asleep So this is actually how me and Anne found out that we had this in common I'm standing outside of the Opus stack summit. I had stepped outside to cool off for a little bit Checking on my phone and Anne walks over and says what is that? So we started talking about just wait what it you're telling me that you can actually check your wife's blood sugar And so that actually started the whole conversation that led us here, right? Now that really interesting thing is I had the proprietary solution But all it does is connect a couple of devices and gives me those data points, right? I just have a trend line. I can set some alarms But a lot of things affect your diabetes control, you know, if you exercise that actually drops your blood sugar When you give yourself insulin it drops your blood sugar Whenever you eat you bolus it takes your blood sugar up So there's all this data out there that would be really interesting to start putting it together I mean everyone is wearing these little wristbands. So you know when you're active Whenever she's taking any kind of reading from a finger prick or her little device both of those data points are being stored Whenever you're eating you're entering in your calories and your food consumption into devices So there's all this data that be really interesting to put together And wouldn't it be amazing if there was an open source solution to this? Right and so that's actually where I Found that there was a dad who also had a kid named Evan who started this whole trend of We are not waiting. That is their hashtag. They're not waiting for a proprietary solution They're not waiting for a company They are sort of reverse engineering the system to figure out how to make it work for their needs today And so this is how I found out about something called night scout And I'm gonna talk a little bit about how that ties into open stack Originally this dad had to use an Android phone with a cable that connected to the dexcom transmitter And it was all very I mean you guys have seen hardware hacking, right? That's what this looked like was just all this stuff kind of glued together But even since I proposed this talk for open stack and came to give this talk We now can do it completely through no USB cable and use the dexcom rest API. I love rest API So here's the thing. It's time to start doing something right so in my case My story was that I was trying to figure out how to give my son Evan more control and at the same time train him He's going to middle school this year. He should have more independence. How can we give that to him? Well, I know we can manage this for technology and I'm a mom and I have access to a lot of cloud so This is this is the journey Would you rather have your kid your wife your friend pricking fingers five times a day or go ahead and get data? Every five minutes and so that's what continuous glucose monitoring gives you and I think that we have to emphasize how valuable this is and controlling this disease you get the steady picture and this Display is what the open source guys came up with and they said you know I'm actually type one myself and I'm going to start hacking on this and I want to see the 24-hour picture and guess what? I'm going to start writing an algorithm that finds trends lines And so this is how we get further and further towards the idea of night scout So night scout info is a really interesting parallel From where I sit of sort of that open source open community support of each other similar to open stack They actually started out as an open support group on Facebook And I don't know how many of you have tried try stack, but we actually do all the support through Facebook So this is another sort of interesting parallel world, right? So there's they're advocating for this citizen hacker for You know using open source development techniques to try to get this Spirit of open source development into the hands of those who want to do this medical monitoring So what does this actually look like? So my son Evan wears the sensor on his arm or backside he carries the little dexcom which is about this big not too heavy for a sixth grader to stick in his pocket all the time and We had to give him an iPhone and I don't know how many parents hear the struggle with getting your kid an iPhone and unlocking it And all we had to do all of that right so but that's the walk that's the walkthrough of what's on him at all times and Takes it to school, but now dexcom itself, which is the company the proprietary gives this transmitter and uploads the value through his iPhone so as long as a the sensor transmitter and iPhone are Close to either internet access or wireless. It is getting up to the dexcom share API And so then what you can do is actually run this night scout CGM remote monitor is the project I just took it from github And reading all the disclaimers right these are people who are parents or caretakers of someone with type 1 Diabetes they are always going to proclaim you can't you need to understand what's happening with this technology You have to rely on common sense sometimes if the numbers don't quite look right But that but that was a really brave thing for this person to do and I just really admire that I could just take this run it on a rack space cloud server and make sure I have no JS running make sure it Restarts anytime the cloud server restarts with PM2 and and I'm learning more and more about what it means to Run an app on open stack and how do I get everything working together and reliable enough for this to stay running and I think that the the opportunity is high and the the Uploading and the learning that I could do about their REST API data and How to store that in a MongoDB? That was a really interesting exercise for me and just how do I get environment variables to stick? How do I make sure the no JS server always has the ones I want because all I'm really doing is taking our dexcom? Credentials and sending them through so then you start looking at I don't know a lot about data security But you know do I have to be HIPAA compliant, which is a US based, you know Privacy policy around health data, so you get into all these sort of hypothetical questions And then lastly We can watch our son's blood sugar on my pebble my smart watch On my smart phone This has been amazing because I can have a babysitter come in and just tell her go to this web page on your phone And you can watch his blood sugar too and just make sure he's in safe ranges So this has been amazing for us to have all of this data have our son give us all this information But how do we connect all this together? And so I think we're trying to paint a picture of multiple open-source projects working together Multiple proprietary solutions working together and sort of show you how this all works, right? So this is a tiered application stack You have to gather the data through the sensor You have to upload it and then understand all of that infrastructure layer And in my case I had a lot of access to a lot of infrastructure but it also gave me a chance to learn more about how Application developers will always press the easy button, right? So this is probably one of the few night scout Things running on open stack on an open-source cloud because they were pressing the easy button for heroku and aws Azure and all these things and so that also gets my mind turning about well What is it that we need to learn from people who just want something to run just want something to work? And I was also inspired by their REST API docs So I have been working the last six months in trying to convert our waddle based API documentation in open stack to an open-source standard called swagger and so swagger will let us Display all of the resources for a REST API and looking at this you just click one of the resources It tells you all of the commands you can do against that resource And then if you click again say on like get entries and just to talk a little more through what this this is the REST API for the data storage display retrieval So the entries is actually a blood glucose level interstitial fluid to be technical That you can then retrieve and display the way the night scout project is doing if you click on get entries product or spec You're going to be able to see notes about it how the response should look and what you should expect to get what some of the Parameters are and so this is just really neat because I actually I don't know if you can see that URL But I got all of this documentation from installing their project itself and this gets me thinking Why don't we just have the REST API docs for open stack on horizon in a tab perhaps? That would be beautiful, right? So this is where I just this is why I want to talk a little bit more about what it means to really take on the Empathy of being an application developer or being a user of open stack resources, right? It's about the applications It's not about the infrastructure make the infrastructure as invisible as you can The night scout community like I said just does everything as easily as possible And so they've documented how to use a free is your website and simply fill in a web form and you get a web page Running node.js with the data connections you expect And so I'm trying to present this here at the summit to try to get us thinking about ways to make the Developer experience so much simpler for deploying an open stack and I know we've made huge strides But I would love to think of how I can do a Container setup for night scout and just hand that over to their developers. This is super easy These are the clouds you could run this on and so that is what I want to start thinking about now another hilarious thing And I think this is just kind of what the way developers think I could make my son's cgm tweet If I wanted because they built that integration and it's just kind of funny But I think this is the way that the world is starting to think and that I think as an open source cloud community We also can start to see where these solutions need to come together Where people need to really start thinking about how to solve your data problems solve your own problems And though we are not waiting really really resonated with me just this last August in Australia a Couple created an artificial pancreas they backwards engineered One of the dex comms backwards engineered one of the insulin pumps and they now have it running on a raspberry pi Which is a very small. I mean it's as small as some of the insulin pumps And so these are the kind of exciting, you know things that now that people are taking their own health data into their own hands This can be really exciting work And so this is where the data itself can be calling you to do something to get these Scenarios that Justin's even talking about can my Fitbit talk to my insulin pump talk to my cgm How can we start to get these things integrated and the way that open mHealth? Which is an organization working to provide standards for this data is starting to think about okay? If I publish the standard and other people can make their data this very the very exact same across devices That's when these scenarios can start to be real and true That's you know, that's the proactive action So of course this gets into the lake and this has to be the worst helicopter parent scenario ever I know exactly what my son is eating when he's eating it whether he's been running around like a crazy nut But it's that we want to start thinking about healing with your health data instead of revealing illness or revealing disease And you know when my son first went to a diabetic overnight camp that does not use cgm because they want to teach them the very basics It was kind of a relief to just turn that notification off And I just knew he was in the hands of someone else And so I also think that we need to realize when we need to make sure that you can take a break from constant monitoring and constant always on and another thing I want to point out is the US government doesn't currently Protect like provide cgm coverage So after you turn 65 if you need to go on Medicaid You have to go back to finger pricks and that kind of stinks So I just want to make everyone who's US base who could do something about this just make sure you know that This is really important technology that we are you know pushing through and that needs to be legislated as well So I'm gonna hand it back over to Justin for Just talk through some security considerations. I mentioned some yeah I mean so you're looking at right the HIPAA thing was a big thing I'm starting to put medical data out there on the web Is it protected is it password protected is it stored on secure servers? Am I now liable for putting this out there? Is there things that malicious that can happen to me for having this data? Which is the kind of reveal thing where you start worrying about having all this out there in the world? Does my employer start looking at this? Do they start watching my trends and start jacking with my insurance rates because I am being a bad diabetic and My I'm not don't have a good h1. Yeah, they can see it. They're actively watching it And then obviously you have all of the different componentry. So you have day layer That's maybe not protected because this is the push button install for a lot of these people these these families aren't necessarily Technologists they don't know how to run application servers. They don't have protect the Mongo database That's just wide open to the world and it can be accessed So I think those are very important considerations for this To think about and it opens up a whole world of security loopholes that you kind of expose yourself to So our hope is to inspire you to look into open source To think of ways to solve the data problems that you might have already Not let's not wait for someone else to solve it the open stack community is especially good at thinking this way Well, I can go ahead and dig into that problem myself But that's our goal here is to talk about the journey and I wanted to bring this story to the open stack summit to also get input from you On ideas for making the application developer experience all the better. So We have time for questions and before we jump into questions. I want to go back. Yeah, so we talked about the No, no, so you mentioned the artificial pancreas For those that don't know what the artificial pancreas is is your cgm s is taking all your data values And you have your insulin pump that delivers insulin back in your body right the second the human has to look at the data Make a decision enter it into the device and actually activate an insulin inflow I mean, and there's a little bit of art to it, right? So the artificial pancreas Actually links those together so then your robot on your arm talks to the robot on your hip That's connected to tube and automatically delivers insulin for you That's one big thing the other one that's really interesting that has absolutely nothing to do with this talk But is around the diabetic is the beta cell therapy So they're coming out where they're actually able to put in not quite stem cells, but beta cells and They regenerate your pancreas and actually your pancreas won't stop for about a year. Yeah, you go and get a little tab And I mean the the neat thing to me about the Raspberry Pi and that level of hacking was a lot of us wouldn't take that risk But in this woman's case She literally Could not wake herself up overnight and had enough really scary nights and her fiance was tired of driving To go wake her up. So they that's why they worked on this together And so I think that's part of you have to be pretty motivated to work on something that's high risk, but also You know lots of opportunity So yeah, open it up to questions. I can repeat back or you can go to the mic or yeah Yeah Well, I'll repeat it back. So we have it for the video, but so the question is around asthma devices or Oxygen saturation So I believe that there is data sensors that you can wear on a mask that then have an iPhone app That would tell you whether or not to go outside, but I don't know about the proactive You know, yeah, you'd have to yeah Right. I haven't seen the little finger cube that someone walks around with all the time that does the my are Yeah, but you could I mean the data is the exact same, right? You're just collecting samples and you could set thresholds and set alarms on it So I think that's where open mHealth becomes pretty interesting because you standardize that format absolutely and I mean I was just a grace hopper which is a Computing technology conference and presented something similar to this in a five minute format But she was working on building sensors that had circuits that would self charge based on body movement And so because the sensor our family members where you literally throw it away Beacause the battery just dies No, the actual sensor will throw away in six months or year. Okay, we haven't gotten that far yet But anyway, that's I think that's where some of the technology I'm seeing moving is getting energy to it. Yeah Yeah First of all, I appreciate your very inspirational share of experiences and actually That gives me a lot of Inspirations for how we should should be a trading or medical data and what it should be from now actually Actually, I'm not asking your question. I'm just giving you some comment on that kind of activities actually sharing medical data up to now has been a Relatively a commercial activities in the marketplaces up to now So that's why the government tried to some make some I mean the Controls where those activities that's the problem of tonight actually. However, this kind of open source activities like from volunteers and Any of the personal activities like this can make some more I think Can give some the government some pressure on Adapting those technologies thought those technologies for helping people Yeah, in real people. Yeah, you know help Indeed did deal help. So I think yeah, it is kind this your experiences and your trial Can be very very variable. I think the night scout is already helping So I don't remember the exact timing, but the Dexcom share with the rest API They originally applied for 120 days approval from the FDA in the US and they got it in 60 days because they knew people were using this successfully and safely That might not be exactly correlated, but I know when I talked to the Dexcom rep They couldn't ship these fast enough. And so I think it is Well, and it's driving innovation on their product too. I mean they Twice already because night's got exists. Yep. Yeah, I'm from Korea actually in South Korea and sharing medical data is very strict. Oh, yeah Yeah, we cannot do anything on medical data. Actually the data should be inside hospital. Yeah, it should Yeah, it should not be outside of hospitals. So Actually, however, this kind of movement, I mean open source medical data sharing world So tells how there's can be another chance to Some humanitarian works or some other people have helping people in Korea. They may be very variable, I think yeah Yeah, I had a question around the regulatory status because you'd mentioned about HIPAA compliance. Have you looked at how the FDA might views the system? Well, yeah, I mean we're not qualified to answer that really but the FDA Approval is of Dexcom itself. I have no approval from anyone to run what I'm running Yeah, so I just wondered if you got thoughts around sort of the open stack and The FDA or not open start open open source I think that like I said that dad was really brave to put it out anyway I mean, I think I haven't read a blog post from him where he said I could lose my house So I'm not going to take on liability for this But I know they've discussed do we apply to FDA approved Governance I think it's a big open question I mean hardware hacking is a thing and you can't really stop it I mean people can reverse engineer it you can hook it up to a raspberry pi and on that one I mean they had to crack the data format They literally backward engineered the data formats actually encrypted based off of the RFID on your cg mass And so you they had to sit there and look at it and actually backwards engineer to get the data out of the encryption format It's part of it, but it's a very good question So unknown going forward of does the government say, okay, this is happening. Let's embrace it or do they try and Yeah, cuz I think they're all sorts of sticky issues. So when you take the artificial pancreas It's not the the person who does it first time round might understand the risk because they've been able to develop the Technology, but then it gets used a second time around and they might not understand that risk and and that one specifically is very interesting Because that's a hacker version of it almost all of the cg mass companies and or the pump companies are paired up in groups and are Actively getting ready to release that so they have ongoing human trials through the FDA of artificial pancreas products from their services And someone beat them to it with a house. We could catch up. Yeah It's gonna push it. Yeah, make sure we get the other ones. We had one here The question is since I mentioned iPhone and dexcom. Is there any integration with the iOS health app very early? I haven't seen super As good of feature set as the other apps So the question is does the iOS proprietary make it more difficult? I think people aren't as motivated perhaps I don't know that people have taken the step of getting it into like the Apple health Tooling yeah Question yeah In my opinion, I think it's a now good or start point for in United States because as far as I know Dexcom is one of medical devices approved by FDA and country. There are a few device medical devices as far as I know and but my question is let's suppose and I know that Amazon AWS and also Rex place is complete They follow Hippocompliant. Yeah, I think and then my question is let's suppose that I Install open stack with several manual knows with new to the horizon Nova and so on and then how can I validate them? my installation follows Hippocompliant or not and the second question is that It's similar to his question there Is there any kind of security issues related to Between medical doctor and from between medical doctor and us Yeah, so the first question's a little unrelated That's more of so right the second a bunch of companies that are putting out open stack are doing a lot of work to start Kind of going down the path of certifying them as PCI or HIPAA various compliance and so that it Some of them being nice and open sourcing and I know that we're actually putting out some of the PCI work there So that you could apply it to any running open snack cloud But it is essentially just going through stick guidelines and adhering to government policies for doing that There's still a lot of work that you have to do as either the person running it or the person running the application So there's a whole bunch of different access models that you have to fit into the second one I Don't know that there's I mean you're taking on that liability by you know getting that data for your device and accessing it It's not like it's going to bleed into affecting the open stack foundation because it ran on open stack or even a company I mean they have takedown notifications and AUP policies that kind of protect them from that But you're kind of taking your power into your own hands. It's my medical device. It's my medical information and I'm using how I see fit So it's a good question. Yeah, thank you very much. Yeah, there's someone back there Can you pass it over? Technologies among the doctors medical community from my personal experience I find that they are one of the last adopters of such I mean no offense to any doctors or Family members that may be in the audience very true. I live in the Silicon Valley But still even doctors there the highest high-tech they might be willing to try his texting probably so With our diabetes educator we haven't seen that I Upload the data to this thing called dia send So I upload the CGM data. I upload the blood glucose monitor data And I'm like plugging things in the pump data and so our doctor takes all of that through a web-based upload So I totally have that behavior you have that problem my wife's a differentologist I can't tell you how many times we sit in front of her and she will say yeah Yeah, your CGM may be super accurate. You can't trust that I need you to do finger sticks And I don't want to hear about that device. We're like you don't understand This is the most accurate thing I've ever had my entire life and you're trying to give me these finger sticks Which five a day I gave you 288 a point. So we do see that quite a bit Yeah, it's really problematic. Yeah, I'm lucky. Thank you for pointing that out anybody else. Did you have one? So the question is do the people who manufacture these things actually give you any input on whether they appreciate this? Yeah, so I went to a diabetes conference where we had a dexcom rep Come talk to people and so his now. He's a rep He's not like senior leader at the company, but he was very open to the idea And he was like be honest how many of you have restarted your sensor because you really only supposed to wear it a week But everybody restarts it because the tape still sticking in your good So I think that they're the the the dexcom rep was super open to it and super open to insulin pump integration So I feel like the best technology companies are figuring out. This is what your constituency wants. I think you can see in the behaviors, right? I mean the dexcom API did not exist when the first version as the share came out And even when the second version of the share came out it didn't it wasn't like oh, we're gonna do on v2 It wasn't until that was out and then people started reverse engineering it again They're like, okay Well, we might as well go and turn on this API because it's gonna happen So I think you're seeing at least an acknowledgement. Maybe not an appreciation It's pushing them. I mean they're having to rev faster than they ever have Yeah, I mean the first version the share took three years the second took six months. Yeah Acceleration innovation all of that. Yeah, Lana Jim one. Yeah, I think I think we're at our time So we'll just leave it it. Thank you so much for coming and listening to our stories