"It wasn't something I was going to wait for" - John Costik Frees the Dexcom Data (Classic Episode)
"It wasn't something I was going to wait for" - John Costik Frees the Dexcom Data (Classic Episode)
Eight years ago, you could use a CGM but you couldn't share the data. Dexcom transmitters didn't connect to phones and parents and caregivers couldn't Follow anyone. That started to change - and change quickly - in 2013. That's when John Costik posted a photo on Twitter. That photo showed John's laptop, at home, monitoring his son Evan's blood sugar while Evan was miles away, at daycare. John soon linked up with others who were also working on improving existing diabetes tech. That was the start of Nightscout and a host of other "We are not waiting" improvements, many of which are now integrated into commercial offerings. This interview with John is from October of 2015. He has since left his job as a supermarket software engineer and is currently the director of digital product development at Beta Bionics. That's the company founded by Ed Damiano that's developing the iLet insulin pump. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Below Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know stuff. Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome to a classic episode of Diabetes Connections. As always, though, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are something new this year, we are bringing back some interviews that are from the very first year of year and a half of the show. We started in 2015, coming up on six years. So there's a lot of episodes that newer listeners haven't heard. And it's kind of fun to go back and give some perspective. I like revisiting. I'm emailing everybody that was featured. If they're getting a classic episode, I'm sending them a text message or a DM or email or you know, I'm just getting in touch with them to say anything you want to share, you know, any new stuff. And it's been really fun to reconnect with some of those previous guests. I’ll be honest with you, I have really hesitated about bringing by older tech type episodes into this run of classics. We did a lot of interviews, like we do now with the pump companies and technology and things like that. And I think it could just be kind of confusing if you're a newer listener, or if you know, you put a classic episode on and you're thinking it's new. But I mean, let's say I run an episode from 2015, when Dexcom, for example, is talking about an upcoming piece of technology that now in 2021, is outdated or never happened. So I'm purposefully avoiding most of those interviews. If you're interested, though, there's a great search box. I'm really proud of the website. It's very robust, you can go and search the 372 episodes that we have put index calm, see how its evolved over time, put in animists and find out what happened, you know, that kind of stuff. Some of those types of interviews, though, especially from the Do It Yourself community are, in my opinion, very valuable and very much worth revisiting. So that is the topic for this week. All right, come with me now let us go back to the olden days of diabetes back before 2013. Now I know most of you that's not the olden days for real. But you think about what has changed since then. Before 2013. It was a time where continuous glucose monitors were used. They were around we were at the time using I want to say the g4 Platinum pediatric. But you know, you could use it, you had a nifty little receiver, but you could not share the data. And it I don't believe in 2013 it was on anybody's phone, you definitely couldn't share. Then we saw the tweet. I've been on Twitter since 2008, thanks to my radio days, but I can't say that I was following john Costik at this time, but he was retweeted by somebody else I knew. And I saw this amazing thing. It was a dad watching his young son's blood sugar. On the dad's laptop. The kid was in daycare, the dad was at home, they were across town from each other in 2013. I started following that dad, john Costik. And of course, I was far from the only one john linked up with others who were also working on improving existing diabetes technology. And all of that was really the start of nightscout and a host of other we are not waiting type improvements, many of which are now integrated into commercial offerings. We are going to revisit that time with john Costik in just a moment and catch up on what he's doing now. But first Diabetes Connections is brought to you by inside the breakthrough on the surface. This podcast is a collection of fun, entertaining and even surprising stories from the history of science. But host Dan riskin digs deeper and he really does entertained while drawing connections between these stories and the challenges faced by modern day medical researchers. The latest episode it was just released a couple of days ago. It is wild Dan explains why it took a dozen people 200 years to discover and then undiscovered a planet. I love this podcast. I'm so glad to partner with them. You can search for inside the breakthrough anywhere you listen to audio wherever you found this podcast and if you are listening through the website or social media, click on Diabetes, Connections COMM And you'll see the insight the breakthrough logo. By the way, good time to remind you this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. A couple of things to know before we jump into the interview, I did reach out to john Costik of course, as I mentioned, and he said let's let folks know I'm hard at work on the islet and its digital products. He is currently the Director of digital product development at beta bionics. He would love that and he says hope you're doing well Stacey and if you are not familiar in the islet is the product from Ed Damiano. We've had him on the show a couple of times beta bionics is the company that is now developing it The islet is finishing some clinical trials this year and should be submitted to the FDA. Pretty soon I am speaking to the folks at beta bionics about coming on the show and giving us an update. So we will work on that as well. But also remember, this is from the fall of 2015, there are going to be dated references. I just want to kind of keep that in your brain. Because while it's fascinating to take a look back, you have to keep in mind as you listen, this is nearly six years ago, but I gotta tell you, I'm just as excited listening back to this interview as I was when I first saw that tweet, John Costik. I am thrilled to have you as my guest this week. Welcome to Diabetes Connections. John Costik 5:41 Oh, thank you. so thrilled to be here. Stacey Simms 5:43 Thank you very much. Let's talk about how this all started. Your son was diagnosed in 2012. He was four. But unlike a lot of people who have children diagnosed at any age, you had more technical knowledge than a lot of us. Can you take us through first, you know your diagnosis story, what happened to lead you to find out that your son have diabetes? And then you know, what made you think to look at the equipment and think well, this isn't good enough. John Costik 6:11 Right? So it was late summer, end of August 2012. And Evan was showing sort of those classic signs that now we know are classic signs, right that he was thirsty all the time peeing all the time and just, you know, little get more lethargic as the day went on. And the 24th was a Friday and my wife Laura went over to pick them up from daycare surprise him with an early lunch. And when she got there that the instructor said, He's so thirsty, he's crying. So she called me and I was out for a run on the canal path. And I remember, she told me what was going on. I said, That's not good. And, you know, he's been really thirsty and really sweaty. past couple days, let's I said just, you know, both of our guts, were telling us, let's get into the doctor. So she called our primary care. And on like most appointments, where they're like, Well, yeah, we'll see you in a couple days, they were really quick to say, Okay, come in, at one o'clock, then, you know, so like a one hour delay from the time they called. So little did we know they I mean, they knew pretty much right away what it was. So as soon as they got there, of course, he had to go to the bathroom. So they did urine check. And he was clearly spilling sugars than they needed to finger check. And he maxed it out. And they basically said, we're gonna call the hospital, you get in the car and just go to the ER, we'll tell them. You're on your way. Stacey Simms 7:42 Did you know anything about diabetes at that point? John Costik 7:45 No, no. And this was Laura was at the doctor. So she called me I was at work at this point. And it was just like, getting hit in the head basically. And yeah, my, my knowledge of diabetes was very limited, much some family members that were type two, and I knew there was no type one and type two, and one was curable, one wasn't. And that was mostly because growing up my mother, my mother, she still is a nurse, but she's retired. But she was the school nurse. And there were a couple kids with type one. And I remember just hearing stories of her having to, you know, go to people's homes to pick up their insulin for them if they forgot it. So understanding that type one was distinctly different, I at least knew that much. But the next three days at the hospital, obviously, they put us through the type one boot camp, and send you on your way, basically with vials of insulin, and, in our case, humalog pen, and we had to sort of figure it out from there. Yeah, they gave us the general guidelines for how much insulin he may or may not need, how much lantis to give him. And we were on our way. Stacey Simms 8:53 Now, it seems like you started on a continuous glucose monitor pretty quickly, how soon after you got home? Did you start thinking about that? John Costik 9:00 So it was mentioned to us while we were at the hospital by the endocrinologist that diagnosed HIV. And at the time was the Dexcom. Seven, and the I think it was still the Medtronic soft sensor at that point. So those were the only two that were shown to us. And he said, okay, it's a lot of information up front. So we actually went with shots and did a lot of finger checking, initially. But one of the one of the things we recognized real quickly, was the ability to to log this data and communicate this data was sort of hampered you know, if the nurse was writing things down in a log book that didn't inform Laura and I how Evan was doing during the day. So the first thing I did was set up a website for logging, you know, nutritional data, finger checks and how much insulin we were giving him. So that was within probably a week after diagnosis had some semblance of that. And that was to prepare him for going back to daycare. So we could all stay in the loop. So that system would send Lauren an email, a text message whenever a treatment was entered. Stacey Simms 10:11 Alright, so then a few months later, though, you decided to go with the Dexcom. g4. John Costik 10:15 Yeah, we started looking around, so around November when I got approved. So I immediately signed up for all the diabetes technology, news letters and everything I could and started, you know, as, as my mind kind of settled down from the diagnosis. You know, I started looking to see what can we use to keep him safer, healthier, both in the short term and long term. And the g4 was approved, I believe it was November in that ballpark of 2012. So I began the process almost immediately to get that it took a while to get it through insurance. Because they actually like to see hypoglycemia before they'll give you tools to avoid it. Stacey Simms 10:52 I know. And if you do, too well, they want they might take it away. That's the craziest part. John Costik 10:56 No, no, your son's still healthy doesn't need the thing that's keeping him healthy. Yeah. So. So unfortunately, or, you know, he did have a low in January, that basically put us over the edge. Then they approved it, and we had it in, you know, the second or third week of February 2013. And that's when we began using that. And does that mean immediately it was sort of a revelation to have this second order data, this trend data along with the blood sugar, just so to know directionally where he's going. And you know, what's happening in those periods that we were blind to before. So immediately after meals, we'd see these big spikes that come right down. But, you know, got our mind spinning on, what can we do to improve that? And at the same time, when we sent him to school, is there any way for us to have continued access to the CGM data? Stacey Simms 11:52 Now you both you and your wife both have backgrounds in engineering? Correct. And so this was something that you looked at, and what did you think of the system because somebody like me, you know, I was a communications major in college, I've worked in broadcasting my whole life. I looked at the CGM. And I thought, Wow, this is so great. How could it get any better? You looked at and thought this is the dumbest device in terms of talking to anything else? John Costik 12:14 Right, but but I understood the position that everything sort of has, has to go through that growing cycle. So I understood that. So I also my wife worked at an FDA regulated company. So we had some idea that putting a medical device online and presenting that data to people is more daunting for the commercial entity than it would be for us as individuals to just extend it. So we I mean, we were never, I never really railed against Dexcom. In at the time, I think they had sort of shown off some semblance of share, or there'd been some patents that came along that indicated that they were clearly moving towards remote monitoring at some point. But it wasn't something I was going to wait for. Right. So I have the CGM. Now this great device, I have a laptop that can talk to it. And I know, I can take that data off and send it to a cloud service. Or, in our case, we just started with a simple Google spreadsheet that we sent the data to. And then I wrote an iPhone app that pulled that data down and your web app, so the school could just see, you know, his current blood sugar and trend. So we integrated that with with our care portal website. And that was powered by a laptop top load. So initially, I just used a repurposed Dexcom zone, what I call a DLL, linking library dynamic linking library. So that's basically just a program that allows you to interface programmatically with the receiver. So I just repurposed that wrote a fairly simple Windows application to just pull that data every five minutes, and then upload it to that. Like I said, that Google spreadsheet. Stacey Simms 14:02 Okay, so I'm just curious, was it hard for you to do that? Did it take you a long time? Or did you sit down and tap the tap tap? You know, you're done. You got it? John Costik 14:10 It wasn't, wasn't challenge. So my background in software, I it was relatively recent background, but it was all focused around windows code, and specifically writing these sorts of libraries for other hardware devices. So I understood if I took their library and put it into what what I would call, you know, a software project, that I wouldn't be able to see exactly the interfaces that could pull that data into my own application. So it really only took probably an hour or two, to write to write the basic windows uploader. Stacey Simms 14:46 And then you put this picture on Twitter. I don't know how long after that said, Look at what we're doing. Isn't that interesting? And did you expect the reaction that you got which was basically jaws dropping around the country, saying how Do I do that? John Costik 15:01 Yeah, that's, I took some pictures of the windows one initially. And that didn't get a ton of attention. And when when I started going after a truly ambulatory like a mobile solution, that is what really drew people in. So I knew Evan was going to kindergarten, I wanted him to be able to remotely monitor, monitor, monitor, no matter where he was, was, he was on the bus, in class moving around, so I knew, you know, even a really small laptop wouldn't cut, it just wouldn't be convenient for him. But if I could get a small cell phone, smartphone and do that, great. So I started in Android was really the only choice they make much easier to communicate with USB devices and other accessories. So I started working on that, beginning of May, in about a week or two into may, I had sort of unraveled how Dexcom was communicating with the device and, and what that communication looked like and how to interpret that, and then send it along to to a web service to a cloud service. So those tweets got people's attention. And I think I chimed in on on a bulletin board somewhere. And that's when Wayne Desborough reached out and said, Hey, I'd really like to do the same thing for my son, he's his room is too far for the receiver to be in our room and reach him. So we'd like to do to build a remote monitoring system. Stacey Simms 16:36 Okay, so let me stop you there and tell me if this is all correct. Lane despereaux. Now with Bigfoot biomedical, yep. He has an engineering background as well, I think you work for Medtronic for a while, but he had designed his own home display system. He He's the guy who came up with the nightscout name, right. But he didn't connect it to the internet. John Costik 16:56 Now, he, he did so ln really took my uploader and created that open source nightscout back end. So the the website you see today is is an evolution of his original design, and uses the same architecture. So a Mongo database, and a Node JS application sitting on a web server somewhere, and allowing people to view you know, their data or their loved ones data. Okay, so that that core was was Lane's work. And later, he brought on Ross nailer, software engineer, and they sort of refined that and got it to that point where, where it could could go live. So for my part, they, they took my uploader code, you know, I gave that to them. And I took their chart code, and put that into, into our home system. And that's sort of where it took off. So in the middle of the summer, I started using the Pebble watch, because I my whole goal this whole time was just how simple can I make this? How glanceable and easy can I make this for everybody involved, because I don't want to stare at the chart all day at work, I just want to know when something's up, I want to go on my day, but know that this system will tap me on the shoulder when it needs to. So Pebble watch was was a good way to do that. Because you can make it vibrate and do all sorts of things to get your attention. Stacey Simms 18:25 Okay, so now you've got it on your Pebble watch laying despereaux and other people that you've mentioned, are coming up with their own additions. When did what we now recognize as nightscout? When did that all come into play? Was it a few weeks or months after you all kind of shared your codes? John Costik 18:45 So I think lane started using that name fairly early on. And we all met Finally, actually, Lane was in Rochester, New York for a sailing competition that I believe he won at the end of August 2013. So he actually was at our house for Evans first diversity. And that was a great time when he and I got talking...