John Costik and son Evan


Download

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.

Check out Stacey’s book: The World’s Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

—–

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
—–

 

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription Below

sponsors & partners


Real Good Foods logo

 

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 about, you know, everything, right? Very, just an amazing individual really inspired me and opened my eyes to like, Look, there’s a lot of people trying to do this. And right now, between the two of us, we have all the components to make it happen. So it was very inspiring, because up until then, I mean, I was a software engineer at a supermarket. Right? Yeah, that wasn’t something I’d considered. You know, I lived in a small town. I never really looked beyond that. I liked my simple life. And part of my response to Evans diabetes was I want my simple life back. So these were the tools I wanted to build that I needed to take it back. Right. Yeah. But now seeing this really large unmet need across the entire, you know, population of people with diabetes. He’s in there and their loved ones woke me up to that. And then in November, I went to the data exchange, which is hosted by tide pool and diabetes mine. And then diabetes, mine has their Innovation Summit the same, you know, in that same couple days cycle. And that really sort of sealed the deal for me to see what type who was doing, starts trying to integrate all this data. And I’m like, wow, okay, this is really happening. So I can either join in, or, or not, right, and it just seemed like an obvious thing to, you know, pitch in and see what we could do. So, at that point, it was really just a matter of refining that code, to a certain point where other people could make it work. And personally, I didn’t think it would ever grow beyond, you know, a sort of core really technically savvy group of people that could set up their web server set up the cloud service, right, and compile a Java application for their Android phone.

 

Stacey Simms  21:04

Well, that’s what’s what’s remarkable about this whole movement is that, you know, as you say, this core of people, is making it all available to people who have no real technical knowledge, who are completely intimidated by the whole thing, but want access to this information to the point where they’re willing to get in a Facebook group and say, Hey, can you help me? And then people do it, people help. And it’s been really remarkable to see how it’s grown and how people like you are not just sharing your code, but sharing time to set up all of these systems. When you look back now. I mean, can you imagine that? There’s something like 14,000 people in the CGM in the cloud Facebook group. I know not everybody’s using the system. But they’re they’re looking at this stuff. Did you think I would get this big?

 

John Costik  21:50

No, no, not Not a clue. I mean, Laura and I, we had some inkling that what we built was awesome. Because it really enabled Evan to have as close to like that standard school kindergarten experience, as we could have ever imagined after his diagnosis, right? Oh, he had to carry, you know, a little bag around, but he would have had to anyway, right, he’d always need his glucagon and glucose and finger checker. So it wasn’t too much more of a burden to put a cell phone and and the the CGM monitor in their hand. Good. Yeah. So just enabled him and we worked with the school nurse, and we refined, you know, our web application and our care portal, to really be something that that she was comfortable using. And something you know, that that informed us, you know, in real time of what was going on in school. So it’s really just a nice experience. And again, like, like the daycare experience we’ve had an amazing experience with, with the Lavanya School District, the nurse in particular, she’s just a wonderful person just wants everyone to be happy and healthy, and every kid in that school, so she’s, she’s like Laura nine. Now. She just she knows his diabetes really well, because she can just glance at and she gets a really good sense for what’s going on in his day and how he’s feeling and how that will impact his blood sugar. And there’s almost never an occasion where we have to chime in or even text her to say, Hey, can you give him a grammar to, you know, and if we do do that she’s already on her way down, are already calling down to make it happen. So it’s just it’s just been an amazing thing for him and for us, and it’s been wonderful.

 

Stacey Simms  23:34

How’s he doing these days? He’s in second grade now.

 

John Costik  23:37

Yeah, second, he’s doing a good. So it’s, it’s nice with the share receiver, we can use the Bluetooth connection so that that Reagan’s gotten smaller and simpler for you know, it’s wireless now. So we really can get his, you know, physical burden of the devices to a minimum at this point. It’s also improved outcomes tremendously is a one C is great, you know, his standard deviation is time and range, all these things improve by having this sort of, always on and easy access to, to all this diabetes data.

 

Stacey Simms  24:13

And you mentioned the Dexcom share, we should note that Dexcom share Medtronic has is coming out with a system that is similar, where instead of doing it yourself, they’re setting it up for you. But that and I don’t know if I’m explaining this correctly, but there are still features that you all have set up and that the nightscout folks have set up that are not included in the share, is that correct?

 

John Costik  24:36

The main missing feature that people really enjoy, is that what folks refer to as raw data. So the ability to see some data during either a restart or a warm up period, or during the dreaded triple question marks. You know, there’s there’s some visibility data, you’re not totally blacked out from that data with nightscout. Whereas, as the standard Dexcom, system will do that.

 

Stacey Simms  25:11

Let me turn this around for just a moment and play devil’s advocate. While many people, obviously 1000s of people use nightscout, and are excited about the Dexcom, share, there are a lot of people who have type 1 diabetes, I’m going to put teenagers in this category, probably a lot of them who feel as though this is a bit overbearing, and who feel as though there needs to come a time when you know, parents, or others, you know, maybe don’t have access to their numbers, or that this creates a situation where there’s just so much hovering. Now, it’s difficult for me to ask you about that, because you’re doing this for your family, you didn’t do this for everybody else. What’s your take on that? And even still pretty little, but what’s your take on

 

John Costik  25:57

that? My take is always in law. And I’ve always said, you have to you have to find the systems and build your own system to an extent, you know, whether you’re selecting devices, or features on those devices, that that suits you, in that time in that context of I have a teenager with diabetes, I have a young child with diabetes. So if you have a teenager that is very trustworthy, and manages their diabetes really well, you know, maybe you’re, you’re not going to look at that remote monitoring, it’s an essential piece. Right. And for folks that may be worried more about their teenagers. I mean, at some point, you you, you do have to stand up and say like, Look, I’m I’m your parent, hovering or not, I want to keep you safe and alive. And I think there probably is a balance that you have to find with the individual child. Right? So if they feel it’s really invasive. You How can we make the system less invasive, maybe they don’t always have an always on access, but they get alerted to you know, impending hypoglycemia? Right. So there’s always ways that since it’s an open source system, people could take the system and, and really fine tune it to their particular needs. And for us, with epanet his age, it’s less about hovering, and more about actually giving him more freedom. Because us, knowing what his blood sugar is allows him to just be a kid. Right? And it’s, we don’t he doesn’t get bothered nearly as much as he would if we didn’t have it. So so there is that sort of aspect that I think gets overlooked, you don’t realize that it actually enables more freedom, in most cases?

 

Stacey Simms  27:45

I think that is a great point. Because it’s a parenting question, right? It’s not a technical question. The system exists, and it’s great. And how you use it is up to you I’ve shared before I have never used nightscout. It’s not something that I first when it first came out, I looked at that and said, we’ll break that in about three seconds, if we can even get it set up. It’s just not us. And when shear came out, I was one of the people who got the cradle and use it overnight, loved it and never really felt like I needed to get an upgrade because my son is at a point where he’s at a terrific school. He’s in fifth grade. And I did not feel that I needed to remote monitor because he’s at an age. And listen, I can get criticized for this. Or I think it’s better for him to make some mistakes, in what I know, after all these years is an incredibly safe and supportive environment. But I got the share receiver. And I use it, as you said, finding it gives him more freedom. There’s a tradition in my town, where the fifth graders walk from school on Friday afternoons to our little town and are allowed for like two hours the town tolerates them running around, going to the soda shop, yes, we have a soda shop, going to the green going to the library on their own. And I didn’t want him doing that, without at the very least a way to contact me. And we have both found that having the share system. And he only really takes a cell phone to school on Friday so I can see it. He doesn’t even need to check in. I know what’s going on. I’m not too worried about it. We text about well, what are you going to eat? And how are we going to deal with that. But it’s made it so much easier. So as somebody who doesn’t remote monitor on a regular basis, that little tool has given him freedom if he was two years old. I mean, my son’s diagnosed before he was two, would I feel differently? Probably. But it’s it is I think it’s more a parenting question than a technical question. So maybe it wasn’t fair to ask. You

 

John Costik  29:36

know, I think it’s fine because ultimately I mean, I’m, I’m a parent, there’s a lot of all this came out of what I felt were our needs as a family. Definitely one of our, you know, one of our family members safe and happy and to improve the quality of life at all. It does come down to how people you use the tool. It can be very invasive, if you’re a parent that is constantly paying that kid to do so. Right So the technology can enable hovering as much as reduce it, I think,

 

Stacey Simms  30:06

yeah. And ask me again in middle school and ask me again in high school. So you know, these things changes as the kids change, right. And as the setup changes, hey, you also share your information. With some recent guests of mine, I talked to Dana and Scott from the open APS project that do it yourself pancreas system, and they’re basically working on the you’re operating an artificial pancreas system that Dana has worn for almost two years. Now they close the loop last year, what do you think is going to happen next? What do you look at in technology? And say, yeah, that’s going to happen? And I’m going to have that forever? And

 

John Costik  30:42

that’s a good question. So obviously, you know, I want us all to be put out of business, just cure it. Exactly. But if if, if there’s a functional cure, whether it’s bigfoots product, or Dr. damianos product, or somebody else, you know, whether it’s encapsulated islet cells, you know, via site, if they figure it out, and are able to do an implant that reduces the insulin need, significantly, if not eliminated, those those are the sort of things that that make me excited, and I look forward to those and, and Scott, and Dana very clearly showed, like, Look, you need to get this AP stuff rolling, because it can be tremendously beneficial to people with diabetes, right? It reduces their burden makes them much healthier keeps their blood sugar’s in range, with a much higher percentage, right? Yeah. So early on, they were I think it was Scott reached out to me saw a couple tweets, he tweeted back and said, hey, how can I get this? So he was one of the folks that I shared the uploader code with early, you know, before it was publicly available for it was open source. You know, I knew you looked into his background, and we talked and it was very clearly the software wise, he was savvy. And so I was happy to share that with with him. And Jason calibres was another person that I gave the uploader to earlier. And Jason Adams, who founded the Facebook group, was another one of these folks that early on, had really reached out to me and got me rolling.

 

Stacey Simms  32:15

Oh, let me interrupt you here. Why not? Why not? Make it more proprietary? I mean, why? Why make it so easily available? When, obviously, people were clamoring for this and probably would have paid you for it? I feel like I should be twirling my mustache. When I asked you that question.

 

John Costik  32:32

That was a question. We got a lot, actually. So when people saw our system, even before we made it open source, they said, Oh, that’s a million dollar idea. I said, Yeah, but it’s not really my idea. Right? Everybody’s had this idea. Scott hanselman had the idea 15 years ago, you know, so people we’ve very smart people know that better, we can access our data, the healthier we’re going to be. So this was just, I just happened to be in the right time and right place. And to be honest, I’m not particularly entrepreneurial. So I wasn’t super motivated to go out and start my own company and raise funds to get this done and dig my heels in with regulatory issues. You know, it just, again, it was it was me trying to get our simple life back and starting a business around it was would have been a huge risk. And that’s something that I was particularly interested in doing.

 

Stacey Simms  33:22

Are you happy with how it turned out?

 

John Costik  33:24

Yeah, yeah. I mean, if I had tried to commercialize it, how many people would be using it? Maybe not? Right, maybe it would have fizzled, and people would still perhaps be waiting for the G phi or the share. If if that group hadn’t come up and sort of opened the FDA his eyes to that need. So yeah, I think it’s, at this point, the best possible outcome I could have imagined and the appreciation from folks, and I don’t deserve nearly any that I get, you know, it was a small part of the story. It just happened to be, you know, early on, but just that outpouring of gratitude, I mean, no one could have paid me enough to counter that.

 

Stacey Simms  34:05

And you are no longer doing software for Wegmans. Which is is that correctly, first of all, which is a fantastic supermarket up in upstate New York and across really the lot of the Northeast that people are familiar with, and I used to shop there all the time when I lived in New York, but you’re not there anymore. What are you doing?

 

John Costik  34:22

So I’ve moved over to the University of Rochester Medical Center. So I was looking for something in health care, because I knew, you know, that’s kind of where my heart was at this point was really to help find similar needs throughout health care. So I didn’t want to just do type 1 diabetes work. I really wanted to dig in and see see what else we could do. Across the wide spectrum of, of conditions and, and whatnot. So there was a position open. At the University of Rochester Medical Center, a new group called the Center for Clinical innovation. I came in and got talking with, with the leaders of the group, this surgeon, Dr. Dave Minton. And then Chris de Silva. Were the primary folks in the group. And we kind of hit it off. And I showed him what I built for Evan. And they said, Hey, I think you’d be a perfect fit for our group. And the rest is sort of history. So I left Wegmans at the beginning of June and have been here and working on software that’s very patient centric. And

 

Stacey Simms  35:35

I’m not just for diabetes,

 

John Costik  35:37

no, not just for diabetes. So the main piece of software that our group has written, will go out to all the clinics, or potentially all the clinics, they’d have to opt in to all the clinics at the University of Rochester Medical Center. So the entire health system, which is a big system, so we’ve built a tool that can aid all the clinics in gathering and interpreting patient reported outcome data. So that’s, that’s been a big push. And then I do have some projects that I can’t announce yet, for those that are diabetes related, because they obviously know that that’s always going to be a passion. So if I can work with the endocrinology groups here, to sort of advanced them along in their technology and how they use it at the clinical level, and how we can ease the movement of patient data to them. And while keeping the patient data, very patient centric, and give them ownership of that data is is sort of sort of a goal there. But there will be some, I’ll have some announcements at some point.

 

Stacey Simms  36:39

That’s great. Well, congratulations. It sounds like the perfect job. And it’s wonderful for the rest of us who are waiting to see what you’re working on.

 

John Costik  36:46

Yeah, no, it’s it’s been great. And it’s a it’s a dream job. I can’t complain.

 

Stacey Simms  36:51

It’s nice when those things can happen. Well, I’m curious, does your daughter she’s just a couple years older than Evan, right? Does she want the technology if she asked me for a cell phone and that sort of thing.

 

John Costik  37:01

She does have a cell phone and Pebble watch. But we don’t make her run. You know, our watch face on it. But it’s for an in basically and we told her it said this is you know, since you have to sit with your brother on the bus anyway, if there were ever an issue where his blood sugar started dropping quickly, we we gave her a tube of glucose tabs and, and a cell phone so we can we can get ahold of her on the phone. You text her and say, Hey, give your brother half a glucose tab, which we’ve only ever had to do maybe once or twice.

 

Stacey Simms  37:31

But she said she still likes him probably because I have an older sister younger brother situation here in my house. And when they were under 10 she was super helpful. And now she’s a teenager. It’s like nothing to do diabetes. It’s just your stinky younger brother.

 

John Kostic  37:43

Yeah, yeah, I could. It seemed that coming.

 

Stacey Simms  37:47

Still help him she’d always help him. But

 

John Costik  37:49

I think they’re both I mean, I’m biased and all but they’re both very sweet and compassionate. How old?

 

John Costik37:54

Are they?

 

John Costik37:56

Nine and so yeah,

 

Stacey Simms  37:57

of course. Yes, of course. Then they always will bait

 

John Costik38:01

breaking breakfast time where they can just they’re just nice. Okay, yeah.

 

Stacey Simms  38:08

It’s all good stuff. It’s all good stuff done caustic. Thank you so much for joining me. I spent a lot of time in upstate New York and central New York. So it’s fun to talk to you from the Rochester area, right?

 

John Costik 38:18

Yeah, you weren’t circulator.

 

Stacey Simms  38:20

I was in Syracuse, Utica. My husband is from Utica.

 

John Costik  38:23

Yeah, my dad went to cert Su and

 

Stacey Simms  38:25

excellent. Me too. That’s great. Well, thank you so much for joining me and I can’t wait to see what you’re working on. Next. Please let me know. And we’ll get the word out.

 

John Costik38:32

All right. Thank you very much.

 

John Costik38:39

You’re listening to Diabetes Connections

 

John Costik38:41

with Stacey Simms.

 

Stacey Simms  38:44

Quick behind the scenes story about this episode from back in the day. I remember when my editor and I think it was I don’t remember it was John Bukenas. Sorry, john, as you’re editing this, I don’t remember if it was john. Or if I was still working with somebody else at that time. I listened back I proof. Listen, I call it to every episode kind of like proofreading your work. And I got it back. And I was so excited because as you know, I’m so excited by the DIY stuff, even though I don’t understand half of it. And I couldn’t wait to listen to it till I got home and I was at Benny’s baseball game. And it was such a great mom. I’m like, No, I have to listen to this. So I’m listening. I’m walking around near the baseball field, kind of watching the game kind of on my phone. And this was at the time when we did not have share. But he did certainly did not have a cell phone. And we used to hang the Dexcom receiver by a clip on the dugout on the wire mesh of the dugout. We just just hang it there and like casually walk by occasionally or just really rely on the alarms to go off. I love baseball for diabetes. For a slow game. Somebody pauses so many times to treat. I mean, the only thing that’s problematic is sliding. And you can kind of figure that out by putting the Dexcom or putting your pump site in different places. But I will never forget right by Davidson Elementary School in the ballroom builds over there walking around and listen to playback of that original episode back in 2015.

Okay, well thank you to my editor john Bukenas from audio editing solutions. Thank you so much for listening. I’m Stacey Simms. I will see you back here next Tuesday for our very next episode. Until then, be kind to yourself.

 

Benny 40:23

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Leave a Reply