Reduce The Burden of Type 1 Diabetes with #OpenAPS with Dana Lewis, Co-founder at OpenAPS
Episode 67

Dana Lewis,

Reduce The Burden of Type 1 Diabetes

Improving outcomes by opening closed loops APS technology to anyone with medically compatible devices

Reduce The Burden of Type 1 Diabetes with #OpenAPS with Dana Lewis, Co-founder at OpenAPS

Episode 67

Healthcare Podcast

Full Podcast Transcript

Reduce The Burden of Type 1 Diabetes with #OpenAPS with Dana Lewis, Co-founder at OpenAPS

: [00:00:01] Welcome to the outcomes rocket podcast where we inspire collaborative thinking, improved outcomes and business success with today’s most successful and inspiring healthcare leaders and influencers. And now your host Saul Marquez

Saul Marquez: [00:00:19] Outcomes Rocket listeners welcome back once again to the outcomes Rocket where we chat with today’s most inspiring and successful healthcare leaders. If you liked the show, please do leave us a review on Apple podcasts. Go to outcomesrocket.com/review and let us know what you think. Love to hear from you all. Without further ado, I want to introduce my outstanding guest Dana Lewis. She is the co-founder of open APS. And she is been in healthcare for quite some time looking to apply the best of analytics data and programming to health care so that we can leverage these technologies to make healthcare better. Dana, I want to welcome you to the show.

Dana Lewis: [00:01:05] Thanks for having me.

Saul Marquez: [00:01:05] Absolutely so maybe you could round that out a little bit better and give the audience a better understanding of what Open APS is and what you are focused on in health care.

Dana Lewis: [00:01:16] Sure. So open APS is the open source artificial pancreas movement which is led by patients like me who have said we’re not waiting for commercial technology to come to the market in a couple of years. So we’ve created DIY technology whether it’s remote monitoring or artificial pancreas says and are using open source principles to make the code better to share with other people and to bring other people into the community. And that’s one big focus of my work.

Dana Lewis: [00:01:39] But the other thing I’m working on is how do we scale what we’ve done in the diabetes community to other patient communities. And I’m actually now the principal investigator I cret funded by the Robert Wood Johnson Foundation in order to study this work but also figure out how to leverage it and scale it to other communities.

Saul Marquez: [00:01:55] I think what you’re doing is so awesome. It’s sort of like at the center of the patient as CEO. I had Robin Farmanfarmian on the show and you are literally doing just that.

Saul Marquez: [00:02:06] Dana you are the patient CEO representing for all those with diabetes which is so cool and opening up the floor to anybody that wants to collaborate and innovate.

Dana Lewis: [00:02:17] Yeah I think it’s really important that we have a lot of flexibility and providing opportunities to patients. There are some patients who want to do more and they’re just not able to. But not everybody needs to create a non-profit or create a company or truly be CEO all the time. So one of the things I’m very interested in doing is exploring what are the many many different ways patients can be involved when they have a spare hour during the week where they want something longer term and really being flexible and adapting to people at all levels and all parts of the world. However they can’t so people can take time off of work to do stuff some people can’t. So we really need to think about what are different ways we can engage patients at different levels of activity.

Saul Marquez: [00:02:53] Now it’s such a good call out. And Dana what would you say the turning point was that got you into the medical sector.

Dana Lewis: [00:03:00] So I was diagnosed with Type 1 15 years ago this weekend actually at my age of 14 and high school. And so that really was my first training point of deciding I was going to do something in health care. And I really wanted to figure out how do I help as many people as possible. I thought about going to medical school becoming an endocrinologist decided that wasn’t the way I could make the most difference. But I’ve really focused on using communications throughout my professional traditional career as well as what I’ve done with Open APS to educate and inform people about what’s possible and to bring people together to collaborate because I think that’s one of the strengths that social media provides us in the modern era of healthcare is really how can we come together in new and different ways when traditional infrastructure of companies businesses and healthcare hasn’t allowed that. So for me the turning point was really that realization of social media as a powerful connector of people and then figuring out what are the different ways we can apply that to make health care about her.

Saul Marquez: [00:03:53] That’s huge and just being able to knock down the barriers and help bring solutions by using social media is so awesome.

Saul Marquez: [00:04:01] And I just you know I think of the DIY movement my brain goes directly to like the 3D printers and all the other things that are going on I 3D printers is just comes up to mind and the stuff that was able to happen because of the DIY movement in 3D printing is just phenomenal. And I’m really intrigued what will happen now that you and your team have started this movement it’s kind of exciting.

Dana Lewis: [00:04:24] I think it’s incredibly exciting and I’m so excited to see what comes next. I mean I think diabetes is actually a data driven disease. So it was quote unquote easy for us because we had the data we knew already how to deal with the data to really kind of push the envelope and figure out what came next.

Dana Lewis: [00:04:37] But I’m really interested to see other communities as they leverage technology and collaborate with others how they to decide to apply this DIY technology whether it’s 3D printing or open source algorithms and software or open source hardware but really see what’s possible because I think people who live with these diseases they deeply understand we deeply understand the problems and what we think is the number one thing that we should be solving and what we think should be solved is not always what companies and the bottom financial line decide are important.

Dana Lewis: [00:05:07] There’s often a gap there. So I’m excited to see more people working together and sharing the ideas. It’s not that all of them can’t eventually become commercial solutions. Many of them can but they and we’ll start from a really deep place of understanding and solving somebody’s problem and then turning around sighting. I want to share with other people because it really helped me. And they’re allowing it to grow and improve as people take it on and make it their own and make it even better.

Saul Marquez: [00:05:31] The movement has started no doubt. Dana you bring such a great point. What is driving innovation isn’t always exactly meeting the needs of patients.

Saul Marquez: [00:05:40] And so it will be really interesting to see what bubbles up from your efforts and the people that are getting involved. What do you think a hot topic you feel should be on every medical agenda today. And how are you and your organization approaching.

Dana Lewis: [00:05:53] So I think interoperability is absolutely key. And I mean that because the devices that are designed today and health care are often designed for the company that makes them they’re not designed for the patient or the doctor or whoever the end user is. It’s incredibly frustrating. And then also if you take device a device b they do not play together. And that’s going to stymie further innovation. It’s going to stymie outcomes and quality of life. And we’re just at a point where we can’t accept that anymore. And so I think companies really need to be thinking about having flexible architecture and infrastructure that yes maybe a patient or a doctor out there might build something really great but they shouldn’t see that as a threat. They should see that as an opportunity to have these small innovation labs out in the community out in the world figuring out how to better work with their product. It’s a win win for the company getting additional perspective has just been shut down. Don’t be interoperable that’s a bad thing. But I think what we’re seeing is true interoperability is really going to be the game changer for the bottom line for these businesses.

Saul Marquez: [00:06:49] It’s a great column Dana and I think about Bluetooth. For instance the things that we could do because everybody decided Bluetooth is the standard right. We need Bluetooth for devices.

Dana Lewis: [00:06:58] Yes. And that exact ability of we went to that built into the device that we can communicate the way we want. Maybe the average person isn’t going to control their pump themselves but there’s a small community of people out there who deeply want to understand and control their device to make it better for them and they’re going to stay on your product and get better outcomes versus moving away to a competitor in search of a product that’s going to work better for them so that interoperability and that flexibility for customization is really going to help everybody. And again it shows the company the market of here’s what people are wanting to do if they’re that willing to DIY. There is a market need out there and you don’t really see that market grow.

Saul Marquez: [00:07:35] Yeah absolutely. And then you start getting innovation that stems from the actual user and things that maybe would not have ever come up in your innovation lab during your R and D.

Dana Lewis: [00:07:46] Yeah I think it’s fascinating from my seat in the diabetes world for things that I’ve heard people say that’s totally impossible and people don’t want that and people aren’t willing to do that. Well as I said today there’s over 400 people worldwide who have self built hardware and software to have an artificial pancreas and there are definitely pros and cons to that and a lot of risk. But people have decided that the net risk reduction is worth it and they’re willing to go through a lot of effort to get those outcomes and so no it’s not impossible and people aren’t willing to do it. And it’s really I think important for companies and people of companies to take a step back and listen to users and listen to customers and listen to patients to really see how is a quality of life such that they are willing to make such a significant investment and time and energy to have a better quality of life.

Saul Marquez: [00:08:29] Dana, you’re an example a healthcare leader that refuses to accept no for an answer.

Saul Marquez: [00:08:36] You refuse to accept convention as the way and it’s this courageous view that you have that really will be the catalyst for change. I really commend you for your courage and your strength and not accept what is and can you give the listeners an example of how you have done things differently to improve outcomes.

Dana Lewis: [00:08:56] I think it really comes down to a lot of the open source principles that are part of the open apx community for those who are not familiar open source Houghton’s maybe fluid and scary but this open source mindset is really about allowing other people to see the source of what you’re working on to be able to have an open and transparent discussion about what could be better show your work in progress. Allow other people to review it and that’s what we do and open APS is the code that runs the open hardware and the open software is freely available for anybody to review whether that’s individuals or companies and so they can chip in ideas or suggestions on how to improve it. They can also take it for themselves apply it and make it better which is awesome but also our documentation is open sourced to like people would be doing this if we didn’t have documentation that helped kind of show them. This is the safest way to do it. Here’s the things to be thinking about and people are constantly coming back and feeding and new ideas. And that sounds pretty straightforward and it seems like maybe everybody should be doing that. But when you think about the traditional way of designing medical devices everybody has closed Sorens devices. They have closed source user guides and so people like me patients will turn to social media and create wikis, blogs and forums and all this other content that’s not maybe always 100 percent open source but it’s working towards that open source of. We need to be able to freely share ideas about what doesn’t does not work and how to hack at work around. And if companies aren’t willing to adopt that and different and allow people to interact like that. People are going to find a way. But I think it would be better for more companies to think about this open source principle of being transparent about what their product does and does not do and allow people to help make it better.

Saul Marquez: [00:10:29] Totally. Give me an example Dana of a time when you had a setback. And what did you learn from that setback.

Dana Lewis: [00:10:38] So when we first close the loop and that means adding a small computer to send commands to my insulin pump to automatically adjustments when dosing. We did this on a Thursday night and I went to bed and I woke up the next morning my blood sugars were great and we designed the system is just an overnight system. But I loved it so much that I was like I’m never letting this out of my sight.

Dana Lewis: [00:10:57] I unplugged it put a battery and it took it to work brought it home and did that. However the computer we were using at the time a Raspberry Pi has a known issue where if you unplug it suddenly sometimes I’ll crash the SD a crash the SD card. It was Friday afternoon and by the time we figured it out. This was before Amazon to our shipping and so I can get a SD card until Monday and I had to go the whole weekend without looping which after two days of looping was heartbreaking and so upsetting and so we very quickly learned to always carry backups and have a backup for that so that we didn’t have that. But that was a very important lesson for us to have early on was to assume that the hardware is going to fail in ways that we didn’t expect and making sure we know what to do. But that became a very important principle Open APS community which is designed for failure we had planned a design for failure around. What happens if you lose communication for any other reason but it really reemphasized to us that we have to assume that every command at the system sends is the absolute last command it would send. So be conservative and do the safest thing based on the available data and that’s really stayed true. So I’ve had many other quote unquote failures for years with this project. But the big major setbacks are really big disappointment because we just had this mindset of assuming you will fail and always try to learn from it and try to make it better. It’s very easy to look at it as a learning opportunity. You always have this growth mindset of. OK. We learned something else that didn’t work. Or we found another edge case. We’re going to design some more safety constraints around that so it’s better for the next person and you do that and you move on. And it’s really great to have that mindset and not to feel threatened or worried by oh gosh something went wrong. It’s like that’s a matter of fact moving on.

Saul Marquez: [00:12:33] Now that’s exciting and I can’t imagine being in your shoes and all of a sudden it crashes and oh my gosh. Now I know I’m not getting my insulin delivered and you’re just freaking out.

Dana Lewis: [00:12:43] It’s not that I wasn’t getting insulin delivered. It’s just I have to go back to the old way of doing things where I had to do God like I see. OK. Out of that analogy. Yeah the automation goes away like it was the best two days of my life.

Saul Marquez: [00:12:56] And that was too funny.

Saul Marquez: [00:12:59] And you know the thing that sticks out is what you said earlier in the podcast is this idea of net risk reduction.

Saul Marquez: [00:13:06] You know sure there are some risks to doing this but you’re doing it on your own accord and the overall net risk reduction is there and that’s why you’re going for it.

Dana Lewis: [00:13:15] And I think that’s so incredibly important when people talk about it and question open apx and questioning is good that’s where the transparency comes in we say yes there is additional risk but the overall benefit makes it a net risk reduction and that’s why so many people have decided to do this is yes they understand the risk. They understand how it could crash and go wrong but in hundreds of people over many years and like millions of hours of experience with this technology we’ve never had any terrible significant adverse event outcome like you might expect or predict happen and that’s because of the safeguards. And it’s also because people go into this with their eyes open they know it’s DIY. They know they’re taking the risk on themselves and they get to decide what level do they put their safety threshold how much insulin can the device give it. And so they are really in control of their experience. And like all projects you see different personalities coming in that people do everything without reading the instructions and they get up and running and then they crank their safety settings all the way to the max like on day one which is for me because I’m not that personality that terrifies me. And then you have other people who will start in Phase 1 with like all the safety settings turn to the lowest possible and they stay there for weeks until they’re comfortable moving on. And that’s fine. But I think again that customization that flexibility and having that knowledge being transparent to the person so that they get to decide their level of concern about risk and safety. And it’s up to them about do they keep using this device day in and day out and they think that people who continue to use this year after year is testament to having the right amount of knowledge for people to feel informed and to decide that it is true that risk reduction and that they are safer with the system about.

Saul Marquez: [00:14:49] What would you say.

Saul Marquez: [00:14:50] One of the proudest moments that you’ve experienced to date is.

Dana Lewis: [00:14:54] Oh there are some good ones that when I think about just give me chills.

Dana Lewis: [00:14:57] I mean for me I was proud day one because the reason I did this is because I was afraid to go to sleep at night that my blood sugar would drop dangerously low. And so the first time I traveled after I had the system and I was in a hotel room by myself you know I was getting ready to go to bed. I used to kind of like lay there for a couple of minutes and kind of mentally prepare myself for how bad it was going to go I was going to wake up and have to drink juice where I wasn’t going wake up and I’m going to feel terrible in the morning and what if I didn’t wake up and being afraid to go to sleep that night is not something that people experience forget. And so after we had the system in the first night I used on the road I went to sleep without worrying and I woke up the next morning going I was able to go to sleep without fear. And that was just a light huge weight lifted off of me and a light bulb went off.

Dana Lewis: [00:15:39] And for me that was that moment. But then I hear parents who talked about being able to be at work and a kid being able to be at school. The kid does their job which is to be at school. The parent does their job at work and nobody worried about diabetes for the day because a systematic cupboard or a parent being able to go with their teenage daughter for not talking about diabetes for 36 hours for the first time and two years since they were diagnosed just a little moments like that where different people have these different relationships different burdens of diabetes and this type of technology freeing them up for that or giving them new experiences to me just makes it all rewarding. I have never thought that we would have so many people using this kind of technology. But I always said if one other person found it as valuable as I did it would be worth open sourcing it. So the fact that we continue to hear these stories week after week and for people around the world to different life situations it’s just absolutely amazing.

Saul Marquez: [00:16:29] It’s a testament to the applicability of what you’re doing. So Dana give us a little bit on an exciting project that you’re working on today.

Dana Lewis: [00:16:38] So open APS to me is the exciting project but one cool thing is that the system that we designed to almost three years ago is the same system we’re using today we’ve continued to innovate on algorithms and features. Yes. Where the version in development that I’m testing right now is one such that instead of having to manually just make insulin at the start of a meal instead of having to count carbs and dose insulin and let the system pick up from there I’m now able to simply put in a carb estimate entry like this is a medium sized 60 Karmiel and I do not have to manually dose my insulin and it’s able to pick up and go from there and give you to similar outcomes when before I was manually dosing. So the most people that may not sound like a big deal but having to remove the burden and the decision making from somebody around meal time was one of those like last big barriers for having a more automated system. And that’s totally what’s exciting to me as we’ve crossed another one of those barriers of making this even more frictionless for people with diabetes.

Saul Marquez: [00:17:35] I love it that’s so exciting. And you just kind of continue to find those barriers and keep breaking through. Hey maybe you’ll be the next Medtronic.

Dana Lewis: [00:17:42] No no no we’re not going commercial. But it’s exciting to see is the speed at which we can innovate. We always think OK Shirley we’re done. We can’t do anything else to top ourselves. You know as a community about the future. And then somebody comes up with an idea and we coded and test it and roll it out to the community people like oh my gosh it’s even better than the last. Nice spread that we thought was amazing. And I think it is a testament to the whole entire community that works on this. But also again that open source of being able to have fresh ideas fresh energy people contributing around the world at all hours. And we all have that shared goal of making life with diabetes better. So it’s just it’s cool to be a part of something like that.

Saul Marquez: [00:18:22] Very cool.

Saul Marquez: [00:18:22] I think it’s super cool and I always think that if you’re getting the traction that you’re getting now I mean just imagine the number of lives that you’re going to be able to improve just by what you’re doing.

Dana Lewis: [00:18:35] Yeah I mean they see it in the people who have chosen to use this technology but what I’m also really excited about is there are companies looking at our code and looking at how do they make their product better as a result of what we’ve learned. And I think that’s where you start to really see the ripple effect as it’s not about commercializing it’s scaling our particular thing. We don’t want to commercialize that we want to keep it open source but that doesn’t mean that the traditional companies who have the ability to scale to hundreds of thousands of people shouldn’t be leveraging what we’ve learned over the last couple of years and taking advantage of that iteration and that’s what I’m excited to see more of is companies partnering with the patient communities with these open source communities that deeply understand and have solved a lot of the problems that maybe they couldn’t figure out how to solve with their infrastructure and their resources. And it doesn’t always have to be complex. We found some very very simple approaches for solving some really really complicated problems. And what we found is that if you can’t simply explain your solution it’s probably still too complicated. And so I’m excited to see more of those conversations and relationships happen and again beyond diabetes too because there’s a lot of expertise out there and other patient communities whether we’re talking about cystic fibrosis or cancer or you name the health condition. There’s expertise out there by nontraditional experts and it’s crazy for us with all the health care problems we have to look that expertise wherever it is.

Saul Marquez: [00:19:54] I love it. That’s great. Dana. This is the part of the show where you and I do a lightning round. It is basically we’re going to put together a course on what it takes to be successful using technology and healthcare the 101 of Dana in tech and health. And so I have got five questions for you. And we’re going to go through these pretty quickly. So I just want to know you’re ready.

Dana Lewis: [00:20:19] I’m ready. Awesome.

Saul Marquez: [00:20:20] OK. So what is the best way to leverage data to improve outcomes.

Dana Lewis: [00:20:25] Design for data first and not last.

Dana Lewis: [00:20:27] Oftentimes data is thrown on at the end of the hour we need to display something versus made central to the design experience. And it also means that people are usually designing for the company’s use and not truly the end user or the patient the doctor whoever’s actually going to be using the technology.

Saul Marquez: [00:20:44] What common pitfalls or mistakes should be avoided.

Dana Lewis: [00:20:47] Forgetting about your end user and that means again designing for the patient first the doctor second the hospital third and your company. Fourth and it’s really about easing the way of the person who’s going to be using it versus making it easy to get it approved through your company or proved through regulatory.

Saul Marquez: [00:21:02] What is the one thing companies or providers must focus on to create meaningful improvements.

Dana Lewis: [00:21:07] I would say to stop thinking about the next tiny incremental change and to really step back and think about designing for what is best for your end user and really what is going to make the biggest difference. I think we often let these companies limit themselves way too much in terms of what they should do next versus thinking about what is really possible and applying their expertise to solving that problem.

Saul Marquez: [00:21:28] Now that’s a great one. And what can organizations do to stay relevant with rapidly changing technologies.

Dana Lewis: [00:21:36] Say what we patients say which is we’re not waiting we are going to find a way to leverage everything possible the fastest technology and change the company in order to catch up. But don’t be beholden to decades old manufacturing or design processes.

Saul Marquez: [00:21:50] I love that. And finally they know what book would you recommend to the listeners.

Dana Lewis: [00:21:53] So I really appreciated reading Thomas Friedman. Thank you for being late. I think he does a fantastic job talking about technology and some of the pivot points of where the technology really sped up and how the technology companies themselves adopted but also just it’s an interesting mindset for us individuals as we work in health care about how do we both speed up to take advantage of the technology but also slow down and really think about the problem and the end users that we’re trying to solve for.

Saul Marquez: [00:22:20] Low that I’ll have to pick that one up. I haven’t heard of it before.

Dana Lewis: [00:22:23] It’s a really good read.

Saul Marquez: [00:22:24] Thank you for being late. So there you have it listeners take a look at the show notes for all the things that Dana has discussed with us today. You can go to outcomesrcoket.com/Dana that’s a and a. And you’re going to be able to find all of the show notes a summary of what we’ve talked about including links to the fun stuff that Dana’s working on and a community that she’s built. So I just want to ask you Dana to ask really just to conclude with a closing thought and then share the best place that the listeners could get ahold of you.

Dana Lewis: [00:22:56] I would say the closing thought is we are not waiting because we can’t afford to wait. And I would love to see more people working in healthcare adopt that urgency mentality and to find me. I’d say check me out on Twitter. I’m Dana M. Lewis. And then also open AP and org and at up yes on Twitter to learn more about the DIY artificial pancreas.

Saul Marquez: [00:23:13] We love it Dana. Keep up all the amazing things that you’re up to. I’m just going to folks. She’s a girl you want to follow. Definitely somebody that’s going to be making some moves here to improve patient outcomes.

Saul Marquez: [00:23:25] Dana thank you so much for being with us.

Dana Lewis: [00:23:27] Thanks for having me.

: [00:23:31] Thanks for listening to the Outcomes Rocket podcast.

: [00:23:35] Be sure to visit us on the web at www.outcomesrocket.health for the show notes, resources, inspiration and so much more.

Recommended Book/s:

Thank You for Being Late: An Optimist’s Guide to Thriving in the Age of Accelerations

The Best Way To Contact Dana:

Twitter – @danamlewis

Mentioned Link/s:


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