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8 episodes with wearenotwaiting
2 episodes with wearenotwaiting
2 episodes with wearenotwaiting
Shane O'Donnell, a sociologist and researcher, has been at the forefront of the "device activism" and #WeAreNotWaiting movement, a globe-spanning community of techies and people living with diabetes who have pioneered patient-led innovations in medical devices and healthcare. Outflanking a stodgy, risk-averse medical device industry, the movement has relied on commoning to develop the Tidepool Loop device, the first open source, interoperable, and automatic insulin-delivery system, and Nightscout, a collectively managed data system for treating diabetes more effectively.
Today, Pam speaks with Renza Scibilia, a renowned diabetes advocate. Renza is a leader who has been using her voice to make significant strides in addressing stigma and improving the language used when discussing diabetes. Don't miss this discussion and chance to learn more from one of the world's leading diabetes advocates as we explore The Importance of Diabetes Advocacy, Addressing Stigma and The Language We Use. Renza Scibilia has lived with type 1 diabetes since 1998 and has worked in diabetes organizations for 22 years. She is the Director of Community Building and Communications in the Global Team at JDRF International. She is also the Global Head of Advocacy for #dedoc°, a European-based organization providing opportunities for diabetes advocates from across the world to become part of a peer network and attend professional conferences under the banner #NothingAboutUsWithoutUs. She is a consultant, facilitator, and media spokesperson who is frequently invited to speak about peer support, diabetes technology, communication in healthcare, and how to reduce diabetes-related stigma. Renza is well-known in the diabetes community and is the author of Diabetogenic, and a regular contributor to many health publications. Since August 2017, Renza has been wearing a DIY automated insulin delivery device and she is part of the #WeAreNotWaiting movement. If you're enjoying this podcast, we'd love to hear from you! Your feedback helps us create content that serves you better. So, if you have a moment, please head over to Apple Podcasts—or wherever you listen to your podcasts—and give us a rating and review. Five-star ratings really help us reach more listeners. You can also Join the Diapoint mailing list for exclusive insights, offers and diabetes wisdom. The Diapoint Family Weekend taking place on 4-5 November 2023 in Dubai! Just imagine—a space where you and your child's diabetes journey is not just understood but it is celebrated! The weekend is packed with activities for children and parents; from team building to fun games and other activities. Registration is now open, and space is limited, so don't miss the opportunity to reserve your spot. You can find out more information at www.diapointshop.com or just drop me an email at info@diapointme.com Don't miss this chance to connect with others. Don't forget to hit that 'Subscribe' button so you never miss an episode. And, if any of our episodes or guests resonate with you, share them on social media or forward them to friends and family who would benefit from our community's collective wisdom. Visit the D-Shop where we offer beautiful, practical diabetes supplies and lifestyle accessories. The Ultimate T1D Game Plan: A game-changing home study program for parents of school-aged children with Type 1 Diabetes. Diabetes resources. Looking for health support? Set up a FREE Health Plan call today! Book a time to meet with Pam at this link. Watch our podcast episodes and more on our YouTube Channel! @DiapointTV Connect with Diapoint @diapointme: Instagram | Facebook | Twitter | Pinterest Connect with Diapoint Arabia - in Arabic!: Instagram | Facebook | DiapointArabia.com Find episodes, show notes and guest info from all Dia-Logue episodes on the Diapoint website. Would you like to sponsor our podcast? Get in touch: info@diapointme.com Diapoint is the place for people touched by diabetes. For more information and full details of our work, visit diapointme.com . Subscribe to the podcast so you get notifications for all our episodes, and please share it on social media or with anyone you think could benefit from this free content. Thank you for listening!
Get caught up on the news and headlines around the diabetes community! The top stories in the last seven days: Senate Republicans nixed an insulin copay cap, but Democrats say they will revisit this issue in a few weeks, Dexcom pushed back their G7 timeline in the USA after the FDA asks for changes, once weekly basal insulin moves forward in trials. Plus, Beyond Type 1 is back in the NYC Marathon and much more! Learn more about the T1D Exchange: https://t1dexchange.org/stacey/ 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! ----- Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD* *Click here to learn more about AFREZZA* *Click here to learn more about DEXCOM* Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. XX In the news is brought to you by T1D Exchange! T1D Exchange is a nonprofit organization dedicated to improving outcomes for the entire T1D population. https://t1dexchange.org/stacey/ XX The copay cap on insulin may come back before the Senate in a few weeks. Senate Majority Leader Charles Schumer say he'll bring tht issue back up.. after Republicans blocked it in a sweeping climate, inflation and health care package passed by the Senate on Monday. Speaking on MSNBC's “The Rachel Maddow Show.” Schumer said, “We're going to come back and make them vote on that again.” Seven Republicans still voted with all 50 Democrats, three short of the 60 votes needed, and it is possible more Republicans would support it if it came up as a standalone measure. It's not clear if this would again be a copay cap or in fact a cap on the actual price of insulin for all, including the uninsured. https://thehill.com/policy/healthcare/3594003-schumer-senate-will-vote-again-on-35-insulin-cap-after-gop-blocked-it/ XX Dexcom is pushing back the timeline for a U.S. launch the G7. That's after the FDA raised questions about the device's software during a review. This has something to do with how the G7 and it's smartphone apps deliver alarms to users. Looks like maybe a limited release in the 4th quarter of this year and full rollout in 2023 if there aren't any other hiccups. As you likely know, the G7 is nearly 60-percent smaller than the G6, it's transmitter and sensor all in one and has a much shorter warmup period. It's been approved in Europe since March. https://www.fiercebiotech.com/medtech/dexcom-resubmit-g7-glucose-monitor-software-fda-review-pushing-back-us-launch XX One type of once-a-week basal insulin gets the go ahead to move forward with clinical trials in the US. Gan & Lee Pharmaceuticals says it's investigation drug called GZR4 is more stable with less day to day variation than once a day basal insulin. There are a few of these weekly insulins in trials, none yet approved. Gan & Lee is also doing trials of the drug in China where they are already a big player in the insulin market. https://www.ganlee.com/detail/668.html XX XX Good news for Senseonics, makers of the Eversense implantable CGM. Shares were up on second quarter earnings and future expectations. I don't generally report on stock market moves of diabetes companies, but the past few years have been a bit iffy for Senseonics and there was speculation on whether this CGM option might not be available in the US. They partnered with Ascensia Diabetes Care and got the six month approval for Eversense earlier this year. https://www.massdevice.com/senseonics-stock-q2-2022/ XX A new call for comments to the FDA but the deadline is TODAY august 15 at midnight eastern time. I'm going to read directly from a post by Joanne Milo in the CGM in the Cloud off topic group. Joanne's been a guest of the show and leads the loop and learn group – she writes. “We have until August 15, 2022 to provide comments on FDA changes to the way CGM display and alarm systems are regulated. This has implications for remote monitoring and automated insulin delivery systems, both commercial and DIY. We request your assistance in helping the FDA and device providers (FDA considers software for treatment of disease to be a device) understand the benefits of real-time CGM access and the risks we carry by not having ubiquitous real-time access to our diabetes device data. We hope you will choose to spend a moment to add your voice to the #WeAreNotWaiting chorus. They provide some text which I'll link up in the show notes as well as the links to this post and the FDA comment portal. https://www.regulations.gov/commenton/FDA-2018-N-1910-0047?fbclid=IwAR2WAtGl3vjTUonamNdlBtAu_pg2-xQOVy8bSqG2peLCUz2eq8R8OgLqtHQ https://www.facebook.com/groups/CGMITCOFFTOPIC XX The T1D Exchange Registry is a research study conducted online over time, designed to foster innovation and improve the lives of people with T1D. The platform is open to both adults and children with T1D living in the U.S. Personal information remains confidential and participation is fully voluntary. Once enrolled, participants will complete annual surveys and have the opportunity to sign up for other studies on specific topics related to T1D. The registry aims to improve knowledge of T1D, accelerate the discovery and development of new treatments and technologies, and generate evidence to support policy or insurance changes that help the T1D community. By sharing opinions, experiences and data, patients can help advance meaningful T1D treatment, care and policy. The registry is now available on the T1D Exchange website and is simple to navigate, mobile and user-friendly. For more information or to register, go to www.t1dregistry.org/stacey XX Team of 50 individuals living with type 1 diabetes will raise awareness and funds for their chronic illness SAN MATEO, Calif., (Aug. 3, 2022) – Going the extra mile this year, global diabetes nonprofit Beyond Type 1 was named an Official Charity Partner for the 2022 TCS New York City Marathon, taking place on November 6. Beyond Type 1 will be among the 500 official charity partners providing thousands of runners the opportunity to run in the world's most popular marathon. This year's Beyond Type Run team includes nearly 50 runners across the United States, Canada, Ecuador and Australia, who are raising awareness and funds for type 1 diabetes as ambassadors for Beyond Type 1, showcasing how they live beyond their diagnoses and supporting crucial efforts and programs for others affected by this condition. First-time Marathon Runner Kyle Banks, known for his tour with the Broadway cast of The Lion King, is the team captain. “The Beyond Type Run team displays the ultimate resilience and strength as they run the marathon. If it weren't for the team jerseys or the technology attached to their bodies, you'd never know they were living with a chronic illness,” said Beyond Type 1 CEO Deborah Dugan. “We are grateful to them for helping us raise awareness, and we thank all of our sponsors for their generous support and donations to the team.” Since 2017, Beyond Type 1 has had roughly 150 people with type 1 diabetes run the TCS New York City Marathon through the New York Road Runners (NYRR) Official Charity Partner Program. “The TCS New York City Marathon serves as one of the world's largest fundraising platforms supporting hundreds of charities and philanthropic efforts,” said Christine Burke, Senior VP of Strategic Partnerships, NYRR. “We are very proud to support Beyond Type 1 and the incredible impact they have made to the diabetes community as they raise important funds to support people with diabetes.” The NYRR Official Charity Partner Program offers an opportunity for nonprofit organizations to raise funds to support their missions and services. Participating charities can offer guaranteed entry to runners who fundraise on their behalf. Since its inception in 2006, the TCS New York City Marathon Official Charity Partner Program has raised more than $400 million for more than 1,000 worthy nonprofit organizations across the globe. Prior to the start of the official program, the New York City Marathon had served as an outlet for individual philanthropic runners since the 1980s. https://beyondtype1.org/beyond-type-1-nyc-marathon-2022/ XX Morgan Shepard book Morgan Shepherd So happy to announce my book “ T1D Looks Like Us! A Type 1 Diabetes Story” is now available to order! I am so excited to share this piece of my heart with you ❤️ Rose was diagnosed with Type 1 Diabetes (T1D) when she was seven years old. Now she is nine and at times feels lonely because she doesn't know any other kids with T1D. With help from her mom, Rose meets people from all over the world who also live with T1D and have their own unique stories to share! This book is intended to spark conversations about empathy, differences, and self-compassion. Through the text children will learn not only about Type 1 Diabetes but also about the diversity of people who are living bravely with T1D. The book is perfect for newly diagnosed children, siblings, and classrooms that have a student living with T1D. XX Next week I'm talking to the folks at Patients For Affordable Drugs about the bill that passed the Senate this week. The insulin copay cap was removed, but what does it really mean for medication prices? The episode out right now is our special 500th episode where I'm interviewed by news anchor Cristina Frank, who hosts the morning show at WMTW in Maine lives with type 1. Listen wherever you get your podcasts That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
It's In the News... the only Diabetes newscast! This week learn about: The DIY #WeAreNotWaiting movement gets a medical write up in the Lancet, a big move for #T1D stem cell therapy and identifying the cause behind a common #T2D condition. We also look at coffee & gestational diabetes and find out why the molecular structure of insulin pictured on an Olympic-hopeful's skis -- Join Stacey LIVE every Wednesday at 4:30pm EDT 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: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast.. XX In the News is brought to you by The World's Worst Diabetes Mom, Real life stories of raising a child with diabetes. Bit of breaking news here.. we just found out today we won a pretty big deal prize. American Book Fest announced The World's Worst Diabetes Mom is the winner of their Best New Non-Fiction category! Huge thanks to the judges and to Spark Publications. How about that? You can find the book – it's my book if that's not clear - in paperback, on Kindle or as an audio book – all at Amazon.com. -- XX Our top story.. a stamp of professional approval for the do it yourself #WeAreNotWaiting movement. Over 40 doctors, legal experts, and other healthcare professionals published a consensus statement in The Lancet, one of the most prestigious and respected medical journals. The authors conclude: “Although we do not suggest that open-source AID systems be universally recommended over commercial options, strong ethical reasons support the use of open-source AID systems, with safety and effectiveness data derived from real-world evidence." Essentially, they say it's time for the medical industry to take these methods seriously, and to establish some standards and protocols to help further access and safe use. https://mashable.com/article/doctors-approve-diy-diabetes-tech-treatments XX Stem cell therapy for type 1 moves forward. CRISPR therapeutics and Viactye announce approval for a clinical trial application. We've covered this before and talked to ViaCyte on the podcast. They've been moving forward with stem cell research and you may know Crispr as a gene editing platform. The idea is that together these companies could find a functional cure for type 1. This is a Phase 1 clinical trial designed to look at safety and efficacy. They expect to start enrolling patients by the end of the year. https://finance.yahoo.com/news/crispr-therapeutics-viacyte-inc-start-133000366.html XX A new study suggests a lack of a specific molecule in red blood cells may be the root cause of vascular problems in people with type 2. Red blood cells are important for many reasons, one of which is maintaining what's called cardiovascular equilibrium. This is partly achieved through the production of nitric oxide. This is a problem in people with type 2 and these researchers speculate it's because they have much less of something called micro-RNA-210 than those without diabetes. Interestingly, blood sugar control through medication appeared to cause no major improvement here – it didn't affect the red blood cells. https://www.medicalnewstoday.com/articles/scientists-identify-new-cause-of-vascular-injury-in-type-2-diabetes XX Good news for pregnant coffee lovers: Consuming a low amount of caffeine during pregnancy could help to reduce gestational diabetes. This is one of those confusing health issues that seem to change every year.. right? Drink more coffee, drink less coffee.. this study says if you're already drinking coffee or any caffeine, about two cups a day is just fine and may reduce your risk of gestational diabetes. If you're not already a coffee drinker, there's really no reason to start. There were no statistically significant differences in blood pressure, preeclampsia, or hypertension between those who did and did not drink caffeine during pregnancy. https://www.news-medical.net/news/20211111/Low-amount-of-caffeine-intake-during-pregnancy-may-help-reduce-gestational-diabetes-risk.aspx XX The government of Japan announced this week that a company there has developed quote - the world's first blood glucose level sensor that requires no blood sampling. The sensor uses cutting-edge laser technology for a much brighter infrared laser, enabling anyone to hold a fingertip over its light for about 5 seconds to easily measure their blood glucose levels. The company is now working on mass production. Not a lot of info here but the website says 2023 is their goal for launch. http://www.light-tt.co.jp/?lang=en&fbclid=IwAR0h6rlJKXwxEuUDQ8O0_KFYLCg885_pITiVE9xPjgsIXLPCaK9cuJntjSo XX Scotland has become the world's first country to begin routine testing of C-peptide levels in patients with type 1 diabetes. Couple of goals here they say… first to identify people who have retained robust natural insulin production and second.. to see some who might not have type 1 at all. C-peptide is a substance that is created as a byproduct of natural insulin production. A preliminary study looked at 850 people with type 1 and found that about 13% had more than what's thought to be the usual expectation of insulin production. They also found that 5.1% were reclassified to type 2 diabetes and 1.6% were reclassified to monogenic diabetes. Many of those people didn't need to take insulin any more. One quick note – I've seen this article floating around which says that half of the people in this study did NOT have type one. That's not the case at all. The only thing I can think is that someone misread the 5.1% reclassified to type 2 and misread it as 51%? But it's a tiny number. Many more people are misdiagnosed as type 2 when they have LADA or type 1. https://www.diabetesdaily.com/blog/why-scotland-is-now-testing-the-c-peptide-levels-of-everyone-with-type-1-diabetes-691720/ XX Finally Something really unique for Diabetes Month. A ski company has created a custom set – with the pattern of the chemical composition of insulin. I'll show it here and in the FB group for those listening.. Lauren Salko is a cross racer who lives with type 1. Elan Skis worked with her to design the skis and they're donating all the profits to Children with Diabetes.. It's the Limited edition Ripstick 94 W ski. Lauren Salko has an eye on next year's Olympics.. we'll be watching. https://elanskis.com/lauren-salko quick reminder that the podcast this week is all about less stress for the holidays. It's an ask the D-Moms and guys.. I got an amazing message from a mom who said she quote – cried tears of relief listening to it. I remember how tough it is at first.. but really, we can make great memories and worry less. Let the Dmoms help! you can listen to wherever you get your podcasts or if you're listening to this as on a podcast app, just go back an episode. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
Today we bring you the second half of Harry's conversation with Dave deBronkart, better known as E-Patient Dave for all the work he's done to help empower patients to be more involved in their own healthcare. If you missed Part 1 of our interview with Dave, we recommend that you check that out before listening to this one. In that part, we talked about how Dave's own brush with cancer in 2007 turned him from a regular patient into a kind of super-patient, doing the kind of research to find the medication that ultimately saved his life. And we heard from Dave how the healthcare system in the late 2000s was completely unprepared to help consumers like him who want to access and understand their own data.Today in Part 2, we'll talk about how all of that is gradually changing, and why new technologies and standards have the potential to open up a new era of participatory medicine – if, that is, patients are willing to do a little more work to understand their health data, if innovators can get better access to that data, and if doctors are willing to create a partnership with the patients over the process of diagnosis and treatment.Please rate and review The Harry Glorikian Show on Apple Podcasts! Here's how to do that from an iPhone, iPad, or iPod touch:1. Open the Podcasts app on your iPhone, iPad, or Mac. 2. Navigate to The Harry Glorikian Show podcast. You can find it by searching for it or selecting it from your library. Just note that you'll have to go to the series page which shows all the episodes, not just the page for a single episode.3. Scroll down to find the subhead titled "Ratings & Reviews."4. Under one of the highlighted reviews, select "Write a Review."5. Next, select a star rating at the top — you have the option of choosing between one and five stars. 6. Using the text box at the top, write a title for your review. Then, in the lower text box, write your review. Your review can be up to 300 words long.7. Once you've finished, select "Send" or "Save" in the top-right corner. 8. If you've never left a podcast review before, enter a nickname. Your nickname will be displayed next to any reviews you leave from here on out. 9. After selecting a nickname, tap OK. Your review may not be immediately visible.That's it! Thanks so much.Full TranscriptHarry Glorikian: Hello. I'm Harry Glorikian.Welcome to The Harry Glorikian Show, the interview podcast that explores how technology is changing everything we know about healthcare.Artificial intelligence.Big data.Predictive analytics.In fields like these, breakthroughs are happening much faster than most people realize. If you want to be proactive about your own healthcare and the healthcare of your loved ones, you'll need to some of these new tips and techniques of how medicine is changing and how you can take advantage of all the new options.Explaining this approaching world is the mission of the new book I have coming out soon, The Future You. And it's also our theme here on the show, where we'll bring you conversations with the innovators, caregivers, and patient advocates who are transforming the healthcare system and working to push it in positive directions.In the previous episode we met Dave deBronkart, better known as E-Patient Dave for all the work he's done to help empower patients to be more involved in their own healthcare. If you missed it, I'm gonna recommend that you listen to the first discussion, and then come back here.We talked about how Dave's own brush with cancer in 2007 turned him from a regular patient into a kind of super-patient, doing the kind of research to find the medication that ultimately saved his life. And we heard from Dave how the healthcare system in the late 2000s was completely unprepared to help consumers like him who want to access and understand their own data.Today in Part 2, we'll talk about how all of that is gradually changing, and why new technologies and standards have the potential to open up a new era of participatory medicine – if, that is, patients are willing to do a little more work to understand their health data, if innovators can get better access to that data, and if doctors are willing to create a partnership with the patients over the process of diagnosis and treatment.We'll pick up the conversation at a spot where we were talking about that control and the different forms it's taken over the years.Harry Glorikian: You've observed like that there's some that there's this kind of inversion going on right now where for centuries doctors had sole control over patient data and sole claims to knowledge and authority about how patients should be treated. But now patients may have more detailed, more relevant and more up to date data than your doctors does. Right. You've talked about this as a Kuhnian paradigm shift, if I remember correctly, where patients are the anomalies, helping to tear down an old paradigm, you know. Walk us through the history here. What was the old paradigm and what's the new paradigm and what are you some of your favorite examples of this paradigm shift?Dave deBronkart: Well, so I want to be clear here. I have the deepest admiration for doctors, for physicians and for licensed practitioners at all levels for the training that they went through. I don't blame any of this on any of them. I did a fair amount of study about what paradigms are Thomas Kuhn's epic book The Structure of Scientific Revolutions, like discovering that the Earth isn't the center of the solar system and things like that. The paradigm is an agreement in a scientific field about how things work. And it is the platform, the theoretical model on which all research and further study is done. And these anomalies arise when scientists operating in the field keep finding outcomes that disagree with what the paradigm says. So in the case of the planets circling the earth and the how the solar system works. They discovered that Mars and other planets all of a sudden would stop orbiting and when they would do a little loop de loop. I mean, that's what they observed. And they came up with more and more tortured explanations until finally, finally, somebody said, hey, guess what? We're all orbiting the sun. Now, the paradigm inn health care has been that the physician has important knowledge. Lord knows that's true. The physician has important knowledge and the patient doesn't and can't. Therefore, patient should do as they're told, so called compliance, and should not interfere with the doctors doing their work. Well, now along comes things like all of those things that I mentioned that the patient community told me at the beginning of my cancer. None of that is in the scientific literature. Even here, 15 years later, none of it's in the literature. What's going on here? Here's that first clunk in the paradigm. Right. And we have numerous cases of patients who assisted with the diagnosis. Patients who invented their own treatment. And the shift, the improvement in the paradigm that we have to, where just any scientific thinker -- and if you want to be a doctor and you don't want to be a scientific thinker, then please go away -- any scientific thinker has to accept is that it's now real and legitimate that the patient can be an active person in healthcare.Dave deBronkart: Yeah, I mean, you've said you don't have to be a scientist or a doctor anymore to create a better way to manage a condition. So, I mean, it's interesting, right? Because I always think that my doctor and I are partners in this together.Dave deBronkart: Good participatory medicine. Perfect.Harry Glorikian: You know, he has knowledge in certain places I definitely don't. But there are things where him and I, you know, do talk about things that were like, you know, we need to look into that further. Now, I'm lucky I've got a curious doctor. I found somebody that I can partner with and that I can think about my own health care in a sort of different way. But I mean, sometimes he doesn't have all the answers and we have to go search out something. You know, I was asking him some questions about HRV the other day that, you know, he's like, huh, let me let me ask a few cardiologists, you know, to get some input on this. So do you see that, I mean, I see that as the most desired outcome, where a patient can have their record. They're not expected to go and become a physician at that level of depth, but that the physicians who also have the record can work in a participatory way with the patient and get to a better outcome.Dave deBronkart: Exactly. And the other thing that's happened is and I've only recently in the last year come to realize we are at the end of a century that is unique in the history of humanity until science got to a certain point in the late 1800s, most doctors, as caring as they were, had no knowledge of what was going wrong in the body with different diseases. And then and that began a period of many decades where doctors really did know important things that patients had no access to. But that era has ended. All right, we now have more information coming out every day than anyone can be expected to keep up with. And we now are at a point also where we've seen stories for decades of patients who were kept alive. But at what cost? Right. Well, and we now we are now entering the point where the definition of best care cannot be made without involving the patient and their priorities. So this is the new world we're evolving into, like and Dr. Sands wears a button in clinic that says what matters to you?Harry Glorikian: So I mean, one of the other, based on where you're going with this, I think is you know, there are some movements that have been arising over the years. I don't know, maybe you could talk about one of them, which is OpenAPS. It's an unregulated, open source project to build an artificial pancreas to help people with type 1 diabetes. And I think it was Erich von Hippel's work on patient driven innovation. I talk in my book about, and I ask whether we should be training people to be better patients in the era of, say, A.I. and other technologies. What do you think could be done better to equip the average patient with to demand access to patient data, ask their doctors more important questions, get answers in plain English. You know, be more collaborative. What do you think is going to move us in that direction faster or more efficiently, let's say?Dave deBronkart: Well, I want to be careful about the word better, because I'm very clear that my preferences are not everyone's preferences. Really, you know, autonomy means every person gets to define their own priorities. And another thing is one of the big pushbacks from the hospital industry over the last 10 years as medical records, computers were shoved down their throats along with the mandate that they have to let patients see their data in the patient portal was a complaint that most patients aren't interested. Well, indeed, you know, I've got sorry news for you. You know, when I worked in the graphic arts industry, I worked in marketing, people don't change behavior or start doing something new until they've got a problem. If it's fun or sexy, you know, then they'll change, they'll start doing something new. What we need to do is make it available to people. And then when needs arise, that gets somebody's attention and they're like, holy crap, what's happening to my kid? Right. If they know that they can be involved, then they can start to take action. They can learn how to take action. It's having the infrastructure available, having the app ecosystem start to grow, and then just having plain old awareness. Who knows? Maybe someday there will be a big Hollywood movie where people where people learn about stories like that and. You know, from that I mean that I think nature will take its course.Harry Glorikian: Well, it's interesting because I recently interviewed a gentleman by the name of Matthew Might. He's a computer scientist who became a surrogate patient advocate for his son, Bertrand, who had a rare and undiagnosed genetic disorder that left him without an enzyme that breaks down junk protein in the cells. But he, you know, jumped in there. He did his own research found in over-the-counter drug, Prevacid of all drugs., that could help with Bertrand's deficiency. But, I mean, Dave, you know, Matt is a, he was a high-powered computer scientist who wasn't afraid to jump in and bathe in that, you know. Is that the type of person we need? Is that a cautionary tale, or an inspiring tale? How do you think about that?Dave deBronkart: Desperate people will bring whatever they have to the situation. And this is no different from, you know, there have been very ordinary people who had saved lives at a car crash because they got training about how to on how to stop bleeding as a Boy Scout. You know, it is a mental trap to say, "But you're different." Ok. Some people said, "Well, Dave, you're an MIT graduate, my patients aren't like you." And people say, well, yeah, but Matt Might is a brilliant PhD type guy. What you mentioned few minutes before gives the lie to all of that, the OpenAPS community. All right, now, these are people you need to know appreciate the open apps world. You need to realize that a person with type 1 diabetes can die in their sleep any particular night. You know, they can even have an alarm, even if they have a digital device connected with an alarm, their blood sugar can crash so bad that they can't even hear the alarm. And so and they got tired of waiting the industry. Year after year after year, another five years will have an artificial pancreas, another five years, and a hashtag started: #WeAreNotWaiting. Now, I am I don't know any of the individuals involved, but I'll bet that every single diabetes related executive involved in this thought something along the lines of, "What are they going to do, invent their own artificial pancreas?" Well, ha, ha, ha, folks. Because as I as I imagine, you know, the first thing that happened was this great woman, Dana Lewis, had a digital insulin pump and a CGM, continuous glucose meter, and her boyfriend, who's now her husband, watched her doing the calculation she had to do before eating a hamburger or whatever and said, "I bet I could write a program that would do that."Dave deBronkart: And so they did. And one thing led to another. His program, and she had some great slides about this, over the course of a year, got really good at predicting what her blood sugar was going to be an hour later. Right. And then they said, "Hmm, well, that's interesting. So why don't I put that in a little pocket computer, a little $35 pocket computer?" The point is, they eventually got to where they said, let's try connecting these devices. All right. And to make a long story short, they now have a system, as you said, not a product, they talked to the FDA, but it's not regulated because it's not a product. Right. But they're not saying the hell with the FDA. They're keeping them informed. What are the scientific credentials of Dana Lewis and her boyfriend, Scott? Dana is a PR professional, zero medical computer or scientific skills? Zero. The whole thing was her idea. Various other people got involved and contributed to the code. It is a trap to think that because the pioneering people had special traits, it's all bogus. Those people are lacking the vision to see what the future you is going to be. See, and the beautiful thing from a disruptive standpoint is that when the person who has the problem gains access to power to create tools, they can take it in whatever direction they want. That's one of the things that happened when typesetting was killed by desktop publishing.Harry Glorikian: Right.Dave deBronkart: In typesetting, they said "You people don't know what you're doing!" And the people said, whatever, dude, they invented Comic Sans, and they went off and did whatever they wanted and the world became more customer centered for them.Harry Glorikian: So. You know, this show is generally about, you know, data, Machine learning and trying to see where that's going to move the needle. I mean, do you see the artificial intelligence umbrella and everything that's under that playing a role to help patients do their own research and design their own treatments?Dave deBronkart: Maybe someday, maybe someday. But I've read enough -- I'm no expert on AI, but I've read enough to know that it's a field that is full of perils of just bad training data sets and also full of immense amounts of risk of the data being misused or misinterpreted. If you haven't yet encountered Cathy O'Neil, she's the author of this phenomenal book, Weapons of Math Destruction. And she said it's not just sloppy brain work. There is sloppy brain work in the mishandling of data in A.I., but there is malicious or ignorant, dangerously ignorant business conduct. For instance, when companies look at somebody who has a bad credit rating and therefore don't give them a chance to do this or this or this or this, and so and they actually cause harm, which is the opposite of what you would think intelligence would be used for.Harry Glorikian: So but then, on the opposite side, because I talk about some of these different applications and tools in in the book where, you know, something like Cardiogram is able to utilize analytics to identify, like it alerted me and said "You know, you might have sleep apnea." Right. And it can also detect an arrhythmia, just like the Apple Watch does, or what's the other one? Oh, it can also sort of alert you to potentially being prediabetic. Right. And so you are seeing, I am seeing discrete use cases where you're seeing a movement forward in the field based on the analytics that can be done on that set of data. So I think I don't want to paint the whole industry as bad, but I think it's in an evolutionary state.Dave deBronkart: Absolutely. Yes. We are at the dawn of this era, there's no question. We don't yet have much. We're just going to have to discover what pans out. Really, I. Were you referring to the Cardia, the Acor, the iPhone EKG device a moment ago?Harry Glorikian: No, there's there's actually an, I've got one here, which is the you know...Dave deBronkart: That's it. That's the mobile version. Exactly. Yeah. Now, I have a friend, a physician friend at Beth Israel Deaconess, who was I just rigidly absolutely firmly trust this guy's brain intelligence and not being pigheaded, he was at first very skeptical that anything attached to an iPhone could be clinically useful. But he's an E.R. doc and he now himself will use that in the E.R. Put the patient's fingers on those electrodes and and send it upstairs because the information, when they're admitting somebody in a crisis, the information gets up there quicker than if he puts it in the EMR.Harry Glorikian: Well, you know, I always try to tell people like these devices, you know, they always say it's not good enough, it's not good enough. And I'm like, it's not good enough today. But it's getting better tomorrow and the next day. And then they're going to improve the sensor. And, yep, you know, the speed of these changes is happening. It's not a 10 year shift. It's it's happening in days, weeks, months, maybe years. But, you know, this is a medical device on my arm as far as I'm concerned.Harry Glorikian: It's a device that does medical-related things. It certainly doesn't meet the FDA's definition of a medical device that requires certification and so on. Now, for all I know, maybe two thirds of the FDA's criteria are bogus. And we know that companies and lobbyists have gamed the system. It's an important book that I read maybe five years ago when it was new, was An American Sickness about the horrifying impacts of the money aspect of health care. And she talked about, when she was talking specifically about device certification, she talked about how some company superbly, and I don't know if they laughed over their three martini lunch or what, some company superbly got something approved by the FDA as saying, we don't need to test this because it's the same as something else.Harry Glorikian: Ok, equivalence.Dave deBronkart: And also got a patent on the same thing for being completely new. Right. Which is not possible. And yet they managed to win the argument in both cases. So but the this is not a medical device, but it is, gives me useful information. Maybe we should call it a health device.Harry Glorikian: Right. Yeah, I mean, there are certain applications that are, you know, cleared by the FDA right now, but, you know, I believe what it's done is it's allowing these companies to gather data and understand where how good the systems are and then apply for specific clearances based on when the system gets good enough, if that makes sense.Dave deBronkart: Yes. Now, one thing I do want to say, there's an important thing going on in the business world, those platforms. You know, companies like Airbnb, Uber, whatever, where they are, a big part of their business, the way they create value is to understand you better by looking at your behavior and not throwing so much irrelevant crap at you. Now, we all know this as it shows up. As you know, you buy something on Amazon and you immediately get flooded by ads on Facebook for the thing that you already bought, for heaven's sake. I mean, how stupid is that? But anyway, I think it's toxic and should be prohibited by law for people to collect health data from your apps and then monetize it. I think that should be completely unacceptable. My current day job is for this company called Pocket Health, where they collect a patient's radiology images for the patient so the patient can have 24/7 access in the cloud. And when I joined there, a friend said, oh, I gather they must make their money by selling the data. Right? And I asked one of the two founding brothers, and he was appalled. That's just not what they do. They have another part of the company. And anybody who gets any medical device, any device to track their health should make certain that the company agrees not to sell it.[musical interlude]Harry Glorikian: Let's pause the conversation for a minute to talk about one small but important thing you can do, to help keep the podcast going. And that's to make it easier for other listeners discover the show by leaving a rating and a review on Apple Podcasts.All you have to do is open the Apple Podcasts app on your smartphone, search for The Harry Glorikian Show, and scroll down to the Ratings & Reviews section. Tap the stars to rate the show, and then tap the link that says Write a Review to leave your comments. It'll only take a minute, but you'll be doing us a huge favor.And one more thing. If you like the interviews we do here on the show I know you'll like my new book, The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer.It's a friendly and accessible tour of all the ways today's information technologies are helping us diagnose diseases faster, treat them more precisely, and create personalized diet and exercise programs to prevent them in the first place.The book is now available for pre-order. Just go to Amazon and search for The Future You, Harry Glorikian.Thanks. And now back to our show.[musical interlude]Harry Glorikian: You mentioned FHIR or, you know, if I had to spell it out for people, it's Fast Healthcare Interoperability Resource standard from, I think, it's the Health Level 7 organization. What is FHIR? Where did it come from and what does it really enable?Dave deBronkart: So I'll give you my impression, which I think is pretty good, but it may not be the textbook definition. So FHIR is a software standard, very analogous to HTTP and HTML for moving data around the same way those things move data around on the Web. And this is immensely, profoundly different from the clunky, even if possible, old way of moving data between, say, an Epic system, a Cerner system, a Meditech system nd so on. And the it's a standard that was designed and started five or six years ago by an Australian guy named Graham Grieve. A wonderful man. And as he developed it, he offered it to HL7, which is a very big international standards organization, as long as they would make it free forever to everyone. And the important thing about it is that, as required now by the final rule that we were discussing, every medical record system installed at a hospital that wants to get government money for doing health care for Medicare or Medicaid, has to have what's called a FHIR endpoint. And a FHIR endpoint is basically just a plug on it where you can, or an Internet address, the same way you can go to Adobe.com and get whatever Adobe sends you, you can go to the FHIR endpoint with your login credentials and say, give me this patient's health data. That's it. It works. It already works. That's what I use in that My Patient Link app that I mentioned earlier.Harry Glorikian: So just to make it clear to someone that say that's listening, what does the average health care consumer need to know about it, if anything, other than it's accessible? And what's the part that makes you most excited about it?Harry Glorikian: Well, well, well. What people need to know about it is it's a new way. Just like when your hospital got a website, it's a new way for apps to get your data out of the hospital. So when you want it, you know that it has to be available that way. Ironically, my hospital doesn't have a FHIR endpoint yet. Beth Israel Deaconess. But they're required to by the end of the year. What makes me excited about it is that... So really, the universal principle for everything we've discussed is that knowledge is power. More precisely, knowledge enables power. You can give me a ton of knowledge and I might not know what to do with it, but without the knowledge, I'm disempowered. There's no dispute about that. So it will become possible now for software developers to create useful tools for you and your family that would not have been possible 15 years ago or five years ago without FHIR. In fact, it's ironic because one of the earliest speeches I gave in Washington, I said to innovators, data is fuel. Right. We talked about Quicken and Mint. Quicken would have no value to anybody if they couldn't get at your bank information. Right. And that's that would have prevented. So we're going to see new tools get developed that will be possible because of FHIR and the fact that the federal regulations require it.Harry Glorikian: Yeah, my first one of my first bosses actually, like the most brilliant boss, I remember him telling me one at one time, he goes, "Remember something: Knowledge is power." I must have been 19 when he told me that. And I was, you know, it took me a little while to get up to speed on what he meant by that. But so do you believe FHIR is a better foundation for accessing health records than previous attempts like Google Health or Microsoft Health Vault?Dave deBronkart: Well, those are apples and oranges. FHIR is a way of moving the data around. Several years into my "Give me my damn data" campaign, I did a blog post that was titled I Want a Health Data Spigot. I want to be able to connect the garden hose to one place and get all my data flowing. Well, that's what FHIR is now. What's at the other end of the hose? You know, different buckets, drinking glasses, whatever. That's more analogous to Google Health and Health Vault. Google Health and Health Vault might have grown into something useful if they could get all the important information out there, which it turns out was not feasible back then anyway. But that's what's going to happen.Harry Glorikian: What is the evolution you'd like to see in the relationship between the patient and the U.S. health care systems? You know, you once said the key to be would get the money managers out of the room. You know, if you had to sort of think about what you'd want it to evolve to, what would it be?Dave deBronkart: Well, so. There are at least two different issues involved in this. First of all, in terms of the practice of medicine, the paradigm of patient that I mentioned, collaboration, you know, collaboration, including training doctors and nurses on the feasibility and methods of collaboration. How do you do this differently? That won't happen fast because the you know, the I mean, the curriculum in medical schools doesn't change fast. But we do have mid career education and we have people learning practical things. So there's a whole separate issue of the financial structure of the U.S. health system, which is the only one I know in the world that is composed of thousands of individual financially separate organizations, each of which has managers who are required by law to protect their own finances. And the missing ingredient is that as all these organizations manage their own finances, nobody anywhere is accountable for whether care is achieved. Nobody can be fired or fined or put out of business for failing to get the patient taken care of as somebody should have. And so those are those are two separate problems. My ideal world is, remember a third of the US health care spending is excess and somebody a couple of years ago...Guess what? A third of the US health care spending is the insurance companies. Now, maybe the insurance companies are all of the waste. I don't know. I'm not that well-informed. But my point is there is plenty of money there already being spent that would support doctors and nurses spending more time with you and me beyond the 12 or 15 minutes that they get paid for.Harry Glorikian: So it's interesting, right? I mean, the thing that I've sort of my bully pulpit for, for a long time has been, once you digitize everything, it doesn't mean you have to do everything the same way. Which opens up, care may not have to be given in the same place. The business model may now be completely open to shift, as we've seen with the digitization of just about every other business. And so I you know, I worry that the EMRs are holding back innovation and we're seeing a lot of innovation happen outside of the existing rubric, right, the existing ivory towers, when you're seeing drug development using A.I. and machine learning, where we're seeing imaging or pathology scans. I mean, all of those are happening by companies that are accessing this digitized data and then providing it in a different format. But it's not necessarily happening inside those big buildings that are almost held captive by the EMR. Because if you can't access the data, it's really hard to take it to that next level of analytics that you'd like to take it to.Dave deBronkart: Yes, absolutely.Harry Glorikian: I mean, just throwing that out there, I know we've been talking about the system in particular, but I feel that there's the edges of the system aren't as rigid as they used to be. And I think we have a whole ecosystem that's being created outside of it.Harry Glorikian: Absolutely. And the when information can flow you get an increasing number of parties who can potentially do something useful with it, create value with it. And I'm not just talking about financial value, but achieve a cure or something like that. You know, interestingly, when the industry noticed what the open apps people were doing, all of a sudden you could no longer buy a CGM that had the ability to export the data.Harry Glorikian: Right.Dave deBronkart: Hmm. So somebody is not so happy about that. When an increasing number of people can get out data and combine it with their other ideas and skills and try things, then the net number of new innovations will come along. Dana Lewis has a really important slide that she uses in some presentations, and it ties in exactly with Erich von Hippel's user driven innovation, which of course, shows up in health care as patient driven innovation. The traditional industrial model that von Hippel talks about is if you're going to make a car, if you're going to be a company going into the car business, you start by designing the chassis and doing the wheels and designing the engine and so on and so on. And you do all that investment and you eventually get to where you've got a car. All right. Meanwhile, Dana shows a kid on a skateboard who can get somewhere on the skateboard and then somebody comes up with the idea of putting a handle on it. And now you've scooter. Right. And so on. The user driven innovations at every moment are producing value for the person who has the need.Harry Glorikian: Right. And that's why I believe that, you know, now that we've gotten to sort of that next level of of datafication of health care, that these centers have gotten cheaper, easier, more accessible. You know, like I said, I've got a CGM on my arm. Data becomes much more accessible. FHIR has made it easier to gain access to my health record. And I can share it with an app that might make that data more interpretable to me. This is what I believe is really sort of moving the needle in health care, are people like Matthew Might doing his own work where it's it's changing that. And that's truly what I try to cover in the book, is how these data [that] are now being made accessible to patients gives them the opportunity to manage their own health in a better way or more accurately and get ahead of the warning light going on before the car breaks down. But one of the things I will say is, you know, I love my doctor, but, you know, having my doctor as a partner in this is makes it even even better than rather than just me trying to do anything on my own. Dave deBronkart: Of course, of course. Dr. Sands is fond of saying "I have the medical training or diagnosis and treatment and everything, but Dave's the one who's the expert on what's happening in his life." Right. And and I'm the expert on my own priorities.Harry Glorikian: Right. Which I can't expect. I mean, my doctor has enough people to worry about, let alone like, me being his sole, the only thing he needs to think about. So, Dave, this was great. It was great having you on the show. I hope this is one of many conversations that we can have going forward, because I'm sure there's going to be different topics that we could cover. So I appreciate you taking the time and being on the show.Dave deBronkart: Well, and same to you. The this has been a very stimulating I mean, and the you've got the vision of the arriving future that is informed by where we're coming from, but not constrained by the old way of thinking. And that really matters. The reality, the emerging reality, whether anybody knows it or not, is that people with a big problem are able to act now in ways that they weren't before. I mean, another amazing example is a guy in England named Tal Golesworthy has Marfan syndrome. And one problem that people with Marfan syndrome face is aortic dissection. The walls of the aorta split open and it can be pretty quickly fatal. And he describes himself in his TED talk as a boiler engineer. And he says when we have a weak pipe, we wrap it. So he came up with the idea of exporting his CAT scan data or the MRI data of his beating heart and custom printing a fabric mesh to wrap around his aorta. And it's become and medically accepted treatment now. Harry Glorikian: That's awesome, right.Dave deBronkart: This is the data in the hands of somebody with no medical training, just. But see, that's the point. That's the point. He enabled by the data, is able to create real value, and it's now an accepted treatment that's called PEARS and it's been done hundreds of times. And, you know, here's a beautiful, it's sort of like the Dana Lewis skateboard scooter progression, years later, a subsequent scan discovered something unexpected. The mesh fabric has migrated into the wall of his aorta. So he hadn't he now has a know what doctor, what hospital, what medical device company would have ever dreamed of trying to create that? That's the beauty of liberation when data gets into the hands of the innovators.Harry Glorikian: Well, that's something that everybody can take away from today is at least thinking about their data, how it can help them manage their health better or their life better. Obviously, I always say, in cahoots with your doctor, because they have very specific knowledge, but having the data and managing yourself is better than not having the data and not understanding how to manage yourself. So on that note, Dave, thank you so much for the time today. It was great.Dave deBronkart: Thank you very much. See you next time.Harry Glorikian:That's it for this week's episode. You can find past episodes of The Harry Glorikian Show and MoneyBall Medicine at my website, glorikian.com, under the tab Podcasts.Don't forget to go to Apple Podcasts to leave a rating and review for the show.You can find me on Twitter at hglorikian. And we always love it when listeners post about the show there, or on other social media. Thanks for listening, stay healthy, and be sure to tune in two weeks from now for our next interview.
Zuckerjunkies - Ein Leben mit Diabetes Typ 1 vom Diabetiker für Diabetiker mit Sascha Schworm
Falls Du zu den Personen gehörst, die wie ich echt keinen Bock auf Schätzen von Kohlenhydraten hat, dann höre jetzt genau zu :) Show Notes http://www.nightscout.info/ #WeAreNotWaiting https://www.freestylelibre.de/libre/ Podcastfolge 198 zum Glykämischen Index –https://zuckerjunkies.com/diabetiker-aendere-deinen-lebensstil/ DCB TOP 20 - Award 2021 -> VOTING: https://www.dcb-innovation-challenge.com/vote https://www.heymeala.com/de/die-innovativsten-diabetes-projekte/ ** Danke für´s Zuhören ** Besuche mich auch auf Instagram: @Zuckerjunkies *** NEU FB-Gruppe: https://Zuckerjunkies.com/facebook ** kostenloses eBook über Fett-Protein-Einheiten – ** ►► https://zuckerjunkies.com/produkte/
The DiabetesMine D-Data Exchange is a great time to catch up on the latest technology and get a sneak peek at what’s coming. This is the conference where #WeAreNotWaiting was coined in 2013, which almost seems like ancient history now! We talk to founder Amy Tenderich about what's new and take some time to focus on their effort to reach more diverse voices. Watch the videos from Innovation Days here In Tell Me Something Good, a big diaversary to celebrate.. Stacey's son marks 14 years of type 1 diabetes this week. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. 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 Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, the DiabetesMine innovation days is always a great time to catch up on the latest technology and get a sneak peek at what's coming. This is the conference where we are not waiting. The phrase was coined in 2013 which almost seems like ancient history now Amy Tenderich 0:44 stuff that seemed like such a pipe dream at the time like this whole idea of a closed loop system it was like kind of eye roll or like but now we have a very viable do it yourself. Homemade pancreas closed loop system which I'm using By the way, I've been looping now for quite a while and it's a game changer. Stacey Simms 1:00 That’s Amy Tenderich, founder of DiabetesMine who puts this conference on twice a year. This time around. There was also a big focus on inclusion and representation. Lots of info share In Tell me something good a diaversary to celebrate 14 years of type one in my house. Betty was diagnosed the first weekend of December in 2006. And I just remembered a funny story from that week that I haven't told before. I was always the worst. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. As I said in that intro, my son was diagnosed with type one right before he turned to 14 years ago this week, my husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting in radio and television, local news. And that is how you get a podcast. I'm going to be talking about Benny’s diaversary later on in the show, I will tell you a rather silly story that I just remembered about our first weekend home from the hospital. So about a week after we got home, and we went out we had theater tickets. I will tell you that story later on in the show. But stick around. It's a funny one. I think it just kind of sets the tone for how we manage diabetes and continue to this day. Oh my goodness. I also want to let you know that friends for life is having another conference of virtual conference. And if you are listening as the show is first airing friends for life is happening this Friday, and through the weekend, December 4 2020. And along with the incredible educational opportunities and the wonderful social stuff that they have great meetups, I am also doing my annual game show I do a version of NPR is Wait, wait, don't tell me, which is a really fun game show. If you've ever listened to it. I do Wait, wait, don't poke me and I have taped that and we will be airing it and premiering it this Friday. So definitely come by and please check that out. I will link up all the registration information for friends for life from the wonderful folks that children with diabetes, just go to Diabetes connections.com and click on this episode. You know every episode has pretty extensive show notes where I link up information. And I also put a transcript now for every episode in 2020. And we're starting to work backwards. So hopefully eventually, I'll have a transcript for every episode of the show. Thanks for your patience on that. All right, talking to Amy Tenderich from DiabetesMine in just a moment. But first diabetes Connections is brought to you by One Drop in One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drop glucose meter looks nothing like a medical device. It's sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. My guest this week can be summed up I think in the motto of the conference. We're about to talk about learn, connect, collaborate, Amy Tenderich was diagnosed with type one as an adult in 2003. And not long after that she started the website DiabetesMine, which is a terrific source of news and information in our community. Seriously, if you're not reading it, I'll put a link in the show notes. Make it a bookmark. They even say that anymore. You know, put it in your reading list. They say that anymore. Make sure you check out diabetes mind because all kidding aside, they do a tremendous job on reporting in depth news information in our community if you're interested at all in technology if you want to learn personal finance stories to they do that it's a great deep dive and I rely on it for a lot of information, I share her on the show, of course, I always credit them. But in 2013, Amy started organizing the D-Data exchange twice yearly events that focus on technology and breakthroughs. This year, Amy added topics about diversity and representation in the diabetes community. It's something she was already working on, as you'll hear before, the events of this year brought it to the forefront for many people who maybe hadn't considered that before. But maybe it was already on it. Lots of information here and look forward. Of course, it's always great to catch up with Amy. Amy, welcome back. Thank you so much for joining me to talk about D-Data. I really appreciate it. This conference is always so interesting to talk about. So thanks. Amy Tenderich 5:46 Oh, thank you for having me. Stacey Simms 5:49 first question really has to be just the difference this year in terms of making everything virtual. You know, I was in some of the conference presentations, I have to say this was a cool looking online conference. Do you mind share just a little bit about how were you pleased the way it went? I know at the beginning of the year, it must have been kind of crazy to regroup? Amy Tenderich 6:09 Absolutely. It was it was been a big learning curve, obviously moving from in person to online, no matter what kind of event you do. I mean, first of all, there was this, oh, my God, I'm in the events business. And now we have COVID. And you know, what's going to happen? And there was some question about whether people would still be interested. But I feel like I found that people are really anxious to connect, because we're not going to all these in person events. You know, most of us feel like we're just sort of out there some kind of juggernaut on our own trying to keep up just by clicking on links. And so having a conference that allows people to connect, I think is you know, something that people are still really looking for, we had to do it the first time for our June event, because we do these D-Data events in June and then in the fall. And so you know, that was literally starting from scratch. Our event, as you may know, is sort of like a leadership forum, we always kept it at about 150 people Max, try to keep it somewhat intimate, so that it really put an emphasis on collaboration and interactive sessions. And you know that the networking part of it is really important. So we thought, how can we recreate that. So it's not just people sitting and watching, you know, one presentation after another, especially when everyone's doing so much of that these days on zoom. So I've been working with the same event manager, actually, for years, a lovely woman who, out of San Francisco, who helped me find this platform that is really, in fact, they do use it for much larger events up to thousands of people. But the thing that's so special about it is it kind of recreates the experience of sort of walking into a live conference you like sit down at a table, and then you're able to immediately see and talk to the people who are at your table. And if you jump over to another table, then you're talking to that group. So it kind of looks like a zoom breakout room. But the idea is that it's you know, it's sort of oriented by table. And then what if you want to work together with the people at your table, there's even this whiteboard function that lets people have kind of a little sandbox to play in. And so that we do, again, a lot of interactive stuff, where we try to get people to talk with the group at their table and brainstorm things. So they were able to use that sort of shared space where you can draw pictures and you can post links and and you know, get creative. And you can actually capture whatever your your table does there as a, you know, an image and save it for later if you want. So it really it has this great functionality that allows both live presentations, pre recorded presentations, and then a lot of interactivity. Yeah, so again, it was a big learning curve. You know, it really helped me that we had done this once in June. So going into our two day event. Now in the fall, I had a better I didn't have to kind of recreate that whole wheel of just understanding how the online platform works. You Stacey Simms 8:48 know, this conference is so well known, as you said, leadership technology, things come out. And we'll talk about this that, you know, years later come to market. But one of the things that you focused on early on and or even really, before the conference was this survey and discussion of representation. Amy Tenderich 9:06 So yeah, what happened there? It's actually I'm kind of proud of myself and this was prior to the whole, you know, uprising around George Floyd and the big sort of, you know, visibility of the Black Lives Matter movement back in January, I was talking with Cherise Shockley and a few other people and said, You know, I feel like we should have a panel at our event to kind of delve into this I feel like this is a it's sort of something that's a little bit on the margins we talk about every now and then but this is so not solved, but I feel like people of color are really not represented and and Sharif was all over it said absolutely. We need to have this conversation and started recommending people and so I had already spoken to Mila Clark Buckley, who you may know and a few other people reached out to area Lawrence. And then of course, everything kind of exploded and it was like Okay, wow. And so, in our planning sessions, I basically kind of convened this group of advocates of And I said, Listen, you guys, I want to have a session, I think it'd be great to have a live kind of Roundtable. But, you know, what else can we do? Or how do you guys want this to run? What do you think would be meaningful? So what was so cool is that that group actually drove the whole content of it. So they said, Listen, we're happy to come and be on a panel and talk. But you know, we, again, people of color are not a monolith. Right? They can't represent everyone. And they sent me to get more voices involved. So they had the idea, you know, can we do some kind of research? Can we do a survey so we can gather, you know, input from a larger, you know, swath of our community? And they also said, What about a video? What if we got people to, you know, because we had done this before for diabetes mind with our winners, and you're familiar with the Stacey, where we have these people who are patient voices winners, basically applied to have a scholarship. And then if they won, we flew them out to Northern California, and put them up to be part of the event. But in years past, we'd had those winners each do a little snippet, and just them talking about, you know, who they were and what their sort of advocacy soapbox was, was in the area of diabetes, if you will. So the idea was to do something along those lines, where we ask a larger group of advocates of color, to just say a few words about what they do and about their thoughts on you know, being a person of color with diabetes, you know, what's good, what's bad, what would they like to have changed, see change, I said, it's completely up to you guys. So I don't know if you got to see that. But we created this compilation video that started off our session. And it was really impactful, because it was just people saying, their bit, you know, what's disappointed them or why they do the work they do, or what they would like to see change. And it's just what, you know, I can't I talked about this session is sort of unveiling what's been left unsaid for too long. You know, I think that a lot of this was kind of going on behind the scenes. And some of these people of color also told me that in the past, they kind of if they had a negative experience, they would kind of brush it off, they would just say, Oh, it's kind of a one off, it didn't. It's not necessarily racism, it's just, you know, I had a bad experience. But when they start to connect with each other and share these stories, they realize there's a lot of commonalities, you know, of getting brushed aside of being misdiagnosed of sort of not being proactively told about all of the latest, you know, technology options, because maybe a healthcare provider would sort of assume that they weren't going to be the ideal candidate for a pump or a CGM or something cutting edge. So, you know, it seemed that there were some themes. And when we saw this group of advocates, each recruited more people in their community. So we had a team of about 12 people who actually helped craft the survey questions and vet the survey, and then helped us get it out there to the community. So we had about about about 207 people who completed the survey, there's always some people who start and don't complete answers. And I did a whole presentation on sort of summarizing the results, which is also a video that's posted online that we'll be sharing with people. But yeah, it was just so eye opening. So so many of their concerns are similar to anyone with diabetes, right? They're worried about costs and access, and you know, finding a physician who's empathetic and, you know, who treats them as you know, as a partner in their own care, and all those things. I mean, those are things that I would say are across the board for anyone with diabetes or issues. But what also became very clear that they do not feel represented, we got very strong results that people said, both in marketing and in educational materials, they don't feel represented, they need to see more people who look like them. And that's everything from you know, skin. And he says to, you know, just, you know, seeing someone who looks like me, who might actually use that product. Stacey Simms 13:43 Wow, I mean, so much going on there. And I know a lot of people were posting that they were really excited to not only be involved in it, but to see it. And I always hate this question. But what comes next for something like that? Amy Tenderich 13:55 Is the million dollar question. And that's actually one of the things where you feel like you're sort of a victim of your own success because you have an event and people say, this was so great. What else you gonna do? I'm like, What do you mean, I'm still recovering from this. Stacey Simms 14:12 Back to our interview in just a moment, but first Diabetes Connections is brought to you by Dexcom. And when you got a toddler with type one, you do hear rumblings for a long time about the teen years, you know, hit us full force a little bit earlier than most and I'm so glad that we had dexcom Benny's influence started going way up around age 11. He's almost 16. And it has been an absolutely remarkable transformation, I think is really the only word for it. He's so much taller, everything's different. I mean, I need to tell you what puberty does, but along with the hormone swings, I cannot imagine managing diabetes during this time without the Dexcom continuous glucose monitoring system. We've been able to react more quickly to highs and lows, see trends, adjust insulin doses with advice from our endo. I know using the Dexcom G6 has helped improved Benny's a one C and overall health, if your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Amy, where I have asked her what's next. Amy Tenderich 15:19 So I don't know. But you know what the fun thing is, I mean, not only the fun thing, but I think the important thing is to not try to decide that too soon, the world is changing. And these events are always about kind of what is timely and what you know, we try to sort of take the temperature of, you know, what is boiling up hottest in the in the patient community and in the industry. So especially with our D-Data day, with the technology side of it, you know, we try to let the dust settle from the existing event and see where things are going. What are people talking about? Is it suddenly that smart pens are all coming out to market? And people are buzzing about that? Is it some of the latest trials for the closed loop systems? You know, is it sometimes it was like accuracy of, you know, cgms, that became like a big hot button. You know, obviously right now a lot of it's just about affordability and access, it's an always an ongoing issue. But we really try to and again, especially for the day to day I try to check in with the community, you know, I'm a conduit, but I'm not one of the hardcore developers, or the people who work on loop who make these incredible tools. So I always check in with them and say, you know, what is the community buzzing about what else is you know, who's working on something new and cool? How are people feeling about the latest commercial products have come out, or a lot of people you know, chattering about that they have a lot of input, you know, and just try to sort of find out what's happening out there and then address those things. And, you know, really keep it fresh and timely. So that we're really having conversations about the things that are like currently on top of mind, Stacey Simms 16:49 it's so hard to predict, certainly, right, what's going to take off because you always have devices and people at this event that are as you said, so cutting edge and, you know, certainly the DIY crowd is always well represented. So it's hard to figure out what's really going to hit Were there any products or standouts, I saw a non invasive CGM of some kind like a bracelet that was there. I know Dexcom spoke there was the there was a loop link. I mean, was there anything that really struck you or that you want? Amy Tenderich 17:19 Thank you for asking. So the fall event is actually this two day thing where one day is kind of our broader Innovation Summit, it was our first event that we ever did. And then the second day is D-Data where we go really deep on the technology. So that's why this time, the first day, we did a featured panel on telemedicine and like whole person care. That was very cool. That included Vita Health, One Drop, health first, and what’s the fourth person, fourth group that was there. I can actually look it up. But yeah, but we really because obviously telemedicine is now just medicine. Right? Right. Right. You know, it used to be the sort of add on thing that you could do if you wanted to, but you know, now it's really how care is being delivered. And the whole notion of like, Can we get past just focus on glucose numbers and lots of coaching combined with technology. And then they're trying to help people with like a variety of health conditions while doing really high quality diabetes care. So we have this great talk about it. And I'm sorry, January AI was the fourth company and they are this amazing new machine learning based company out of the Stanford area that is actually doing a platform currently for type two diabetes, but I think they will be expanding. And that group also did a demo on day two, the first day again, was kind of this broad look at like what's going on in healthcare and diabetes care, that's when we had our inclusivity and diversity panel, we also had an interactive group problem solving exercise where we got people to we had a little It was kind of like choose your own medical adventure. It was this video of this, like a sort of mock patient and had her talk about her issues that she's facing. And then there were sort of three choices of what you could recommend for this woman to do as sort of her first line of defense with her diabetes care. And then we had people discuss that at their tables and decide and then vote on which one they would pick first. And then we showed what how they played out in real life, you know, and in order of what people chose as the first choice, so we'd have to do some really cool stuff to get put people kind of in the shoes of a health care provider but also in the shoes of the patient as in again, we have a mix of people at these events. So you've got you know, diabetes educators there and endocrinologists and even some like nutritionists and other people who are recommending stuff to patients and then you have patients who are you know, walking the walk and so it was kind of a cool way for them to discuss like, Okay, if you recommend this to this woman, like what are the pros and cons gonna be? How is this gonna play out? That was really fun. I we like to put people in the driver's seat and kind of see what they do. And a lot of this event is about the fact that you might have someone who is like, You know, really big has big following online as a patient advocate sitting next to you know, the CEO of some major pharma company, sitting next to you know, someone from FDA, and then all these DIY folks mixed in. And you know, we've got healthcare designers, and we've got educators and someone who might be the head of the you know, Joslin Diabetes Center. And so they get a chance to kind of interact and great networking, and I think really gives people a lot perspective and helps to break down barriers between these groups. You know, it really does. Stacey Simms 20:31 I was there two years ago, and it was the first time that I was in the same room as somebody from the FDA. And I remember thinking, This is amazing. And it turns out that part of it was my fault. Because as they explained to me, when I asked like, how come I haven't seen you before, you know, basically, you can come to us, and here's how, and I have put that information out, and I will again, but it was it was one of those situations that you know, I've been in the diabetes community for 12 years at that point. And it just hadn't occurred to me that I could have access to somebody like that. And this is a, you know, a public servant, really. And they explained how to do it. And you know, what the deal was, and it was funny to me, because I while I have a podcast, I'm a diabetes mom. Right? So it was a really nice, you know, lowering of by perceived at this as this boundary. And I'm sure that many other people feel that same way. It's It's nearly as you said, it's a lot of interesting people in the same room. Amy Tenderich 21:21 Yeah, thank you. And I mean, that's why I had this little panic attack when we, you know, when they close down all the Yeah, person events, like, how can we recreate that but, you know, as much as it gets old, being on online stuff all day long. It's amazing what you can accomplish, really. And you know, there are some, like I said, Great platforms that are being improved upon. So after we use this platform in June, we actually gave them feedback about what we would like to see. And they've made some progress, like, yes, it's really great. So you're asking about the non invasive cgms and whatnot. So CGM, obviously is this burgeoning area. So our opening speaker for D-Data this time on Friday, November 6, was Kevin Sayer, the CEO of Dexcom, talking about the future of CGM. And clearly, I mean, if anyone's qualified to do that, it's them. They've led the way. But there are dozens of kind of want to be you know, me to CGM companies coming out, they're doing all kinds of stuff from implantable to, you know, non invasive to semi invasive to just straight up Dexcom copies. We did a story diabetes might not long ago, something like 39 new companies working on cgms, you know, yeah, so there are many, many of them. Obviously, the non invasive or minimally invasive feature has been a dream for so many years. And there was this white paper written years ago called the deceitful Turkey, by an expert physician who had been researching it for so long, it's a very difficult thing to crack to be able to get something that is accurate and really usable. That doesn't penetrate the skin at all. But then you've got companies like bio link that are working on like they call minimally invasive with these like micro needles. So it's not drawing blood, but it's sort of like pokes into the skin very minimally. Mike Hoskins and I, who's my main man diabetes, mind, we were just talking about this the other day that it's probably time to do another story to sort of explain where we are with non invasive technology. Because Yeah, nobody's really done it yet successfully. But there are lots of companies that are just on the verge of having something really viable, which is exciting. Unknown Speaker 23:27 I'd read that story. Yes, definitely. Amy Tenderich 23:31 You know, especially now that you know, one of the big hot topics is the idea that CGM is going to become really, truly become standard of care and become more widespread use even among people who are not on intensive insulin regimen. So it's like what is going to help them be comfortable wearing it and get the most out of it. And we had another interactive session on Friday. And that was all about that it was a mock. We had people at their tables pretend that they were like a design group making a new CGM. And they had to pick their priorities for designing the CGM, and talk about why they did that. And were they trying to simplify data learnings for people? Were they trying to make it more motivational to use a CGM? Or were they trying to kind of like increase the consumer appeal and have it you know, have this kind of sexy look and feel. But I think a lot of people agree that especially for non insulin users, you know, the, the physical factor of the sensor is going to be a big deal breaker, right? But Unknown Speaker 24:26 it Yeah, Amy Tenderich 24:27 yeah, there's just so much going on. And you know, it feels like it never changes. But then again, if you look back, it's like, wow, things have really changed so much, even since we started doing this. And well, Stacey Simms 24:38 and that's what I want to ask you about too. We are not waiting. The phrase, as you obviously know was coined at the D-Data exchange. I was at the first one in 2013. Amy Tenderich 24:50 That's correct. So we started doing the Innovation Summit in 2011. So we had two of those events. And then the third year, it became clear that there were Are all these sort of people out there who were tinkering and you know, doing yourself the sort of technology savvy, it started with a group of D dads, basically diabetes dads who work in technology, who were like, Hey, we can do stuff with this. So and we decided that we would host a get together for those folks. And we were doing the summit at Stanford School of Medicine, that we just did it as a pre day to our summit, the day before, we got this sort of classroom, in this bio center directly across from the big hall, and just invited a bunch of people who were happened to be, you know, in or near the Bay Area, who would be able to come and we thought we'd have, you know, 25 people or something. And we were smashed in this classroom with like, 50 plus people, and there was all this excitement, and everybody was like, sharing their, what they're doing. And we kind of realized, like, wow, we're really onto something. And I want to give due credit to Howard Look, and Brandon Arbiter, from Tidepool, who really helped me I, you know, they were just coming on the scene then too. And so we were having all these conversations, and I said, Hey, you know, I really want to do this event, you guys want to help me, like get this group together? So we worked on it together. And what happened is the next day at the summit, I had asked Howard to get up and sort of summarize what happened at this D-Data exchange thing. And he kind of, you know, presented this term, which I believe the first person to utter it was Lane Desborough who is also a diabetes dad, as you know, and then worked at Medtronic for many years, and then was at Bigfoot for a while. But he basically said, what I'm hearing here is that we're not waiting. We're not waiting for the, you know, industry or for the FDA or for anyone to tell us it's okay to do this. We can do it. We're doing it. Yeah. And yeah. And then it's, you know, just as you know, absolutely blossom from there. So, Stacey Simms 26:38 as you look back at that, and it's been seven years, and it seems like as you had said earlier, it seems like things are moving so slowly and things would never change. And now Surely, there's a long way to go, right. It's not perfect. But now we have hybrid closed loops. On the commercial level, we have more DIY stuff, we have DIY stuff that might be going to be FDA soon, thanks to type pool when you look at the last seven years and your own diabetes management. And if you don't mind me asking, what are your thoughts about how far we've come since lane said it, and Howard wrote it on the whiteboard, you know, we are not waiting. It's pretty remarkable to look back at these seven years. Amy Tenderich 27:14 It's absolutely remarkable. And it's stuff that seemed like such a pipe dream at the time, like this whole idea of a closed loop system, it was like kind of eye roll or like, but now we have a very viable Do It Yourself homemade pancreas closed loop system, which I'm using, by the way, I've been looping now for quite a while. And it's a game changer, you know, and now the industry is coming out with them, it's a little slower. And obviously, on the industry side, you know, they have to, you know, there's so much risk averseness they need to be really careful. So they're, you know, have to make incremental changes. But we're getting there, I think soon. Again, you know, the idea of just getting a pump without a CGM, or even a smart insulin pan without something connected to it would just seem silly, because it's like, of course, you want to have the whole deal so that you can both continuously monitor your blood sugar and then also get help or have it automated to decide your dosing your ideal dosing amounts. So we've come a hugely long way. Insulin pens were done back then and talked about connecting them it took, you know, it's only very recently that the pen came out. And that we're really going to be able to actually use pens in a larger system, again, connect them to CGM and whatnot. And the apps obviously, becoming incredibly long way they were pre primitive back in the day. And, you know, I like to say the biggest problem was that so much of the stuff was being designed by people who don't, you know, not only don't have diabetes, but don't have any patient experience at all, it was being designed, it was just engineering driven, or clinically driven. And it wasn't livable, and it didn't solve real world problems for people, any devices or apps that just add more burden, it's not going to be continued to be used. And it makes absolutely no sense. You know, no, no Unknown Speaker 28:56 doubt, Stacey Simms 28:57 if you could look into your crystal ball for us just for the next year. Really, I know a lot of things were held up this year, because of COVID, things that we kind of expected in 2020 might be pushed to 2021. Or further, I won't hold you to it, we're not going to really make a bet on this. But I'd love to get your take on what you're looking forward to in 2021. Amy Tenderich 29:16 Oh, thank you so much. So we were privileged to be able to host the first ever closed loop system showcase at our fall event last year. So the end of 2019, we had six of the companies that are like getting closest to having or already have a system out. And it was just amazing. You know, they came and they talked about the details of their algorithm and you know, how they, what the targets are set out and whether the settings are customizable. And then we had patients there who had used the systems either in the real world or in studies. And I just think that there's going to be so much continued improvement on these systems. One very encouraging thing is that the studies are no longer being done in some kind of clinical environment or they are doing real world studies where they literally go out Follow people while they actually go out and do sports and eat food and do things that real people do, you know, so I think it's hugely important for kind of the form factor and just to understand how they can improve on the kind of day to day living experience with these systems. So I'm super excited about that. I do think also that insulin pens, again, gone from just being another sort of thing that you use to stick the insulin in your skin to an actual tool that can help people figure out their dosing and help people keep track of their, you know, their whole diabetes management, regime, and, you know, be connected to, you know, your stream of glucose data, which helps you understand what's happening. So, you know, all of this stuff is just getting so much more real world usable. And I think that's really going to be kind of the linchpin going forward. And it's already hard now for family for people who are newly diagnosed now, to even understand how good they have it. Compared to what it was, like, you know, even when I was diagnosed in 2003, I mean, it was a world away. I mean, right? Stacey Simms 31:06 What is the next event for DiabetesMine, I know, things are up in the air with COVID. Amy Tenderich 31:11 You know, so our, you know, traditional pattern has been that we do the D-Data exchange twice a year, so, so again, traditionally, pre COVID, it was in June, on the Friday before the big at a conference, wherever that happens to be. So we've done it in New Orleans, in San Diego, and Boston, Orlando, all the places, right. And then in fall, we would do this two day event, which was always in Northern California, it was at Stanford School of Medicine for years. It's also been at UCSF School of Medicine for the last couple years. And that was the called the Innovation Summit day, which was kind of this broader look. So it didn't only have to be technology, it could be anything that was innovative, whether that's a community program, or whether we were talking about innovations in like coverage, or community events, whatever, and just a variety of different things about improving care. And then the D-Data exchange day, which was always the deep dive into technology. And that event kind of has a pattern to it. At least we've always done it so that we have a featured DIY talk. So we try to always get some interesting speaker from the DIY community to come and talk about something that they're working on. That's cutting edge and new. And whether it be about the community itself for about a particular tool, that we traditionally had FDA come and speak because it's like, let's hear from them. They're so important in all of this. And then we have this lineup of demos that we always do kind of cutting edge stuff. And that's been everything from as you mentioned, new CGM systems to like apps that motivate teenagers to I mean, we've in the past, we've even had some I don't know things for diabetes complications, like socks that can monitor your feet for neuropathy. But right now, it's it's been also a lot of AI, you know, machine learning driven platforms that are trying to help people better calculate their insulin doses are better predict what's going to happen when they eat certain things, or do certain activities, different ways to be able to kind of glean meaning out of your data. Generally, we do June and then we do like early November, it kind of dawned on me that if if Ada does not go back in person, this coming June, which they may not, then we don't necessarily need to be tied to that date anymore. I mean, the the idea originally was, you know, everyone's in town. And it started that very first year that we did the bigger D-Data it was ADA was in San Francisco, which is my hometown. So we're like, oh, everyone's gonna be here. So we'll just do this kind of afternoon thing before and get everyone together. And that's worked really well. Because physically, people are, you know, in from all over the world. But right now, everything's kind of footloose. Because of COVID. Stacey Simms 33:44 well, thank you so much for coming on. And talking about all this and sharing these stories and for doing the conference and putting it all out there. And we'll link up as much as we can. If anybody missed it and wants to read all this stuff. It was really well covered on Twitter, I was following along the hashtag when I couldn't be there. And we'll get the word out. But he thank you so much for joining me. Amy Tenderich 34:02 My pleasure. Thank you so much. And thank you for being part of it. And I hope you will join us again sometime. Unknown Speaker 34:07 You got it. Unknown Speaker 34:13 You're listening to diabetes connections with Stacey Sims. Stacey Simms 34:19 More information about DiabetesMine the D-Data exchange. And that video we mentioned near the top of the interview the video about representation what people had to say, it's only five minutes, it's well worth your time. I'm gonna put it in the Facebook group and I will also link it up here in the show notes. Really interesting people definitely worth watching and worth possibly a follow if you're on Instagram or social media as well check them out. And I love talking to Amy because we always learn something new and see what new technology is coming. So of course more to come in the new year. Boy, I feel like there's a lot coming in 2021 that we've been waiting for. So I don't wanna get too off track or into the future but I'm excited and I'm Hoping to do an episode or two about a summary of what's coming. And I should also let you know I've also got interviews lined up with some of the people that are releasing really cool stuff coming up. We've got a lot to look forward to when it comes to technology in the new here, okay, tell me something good in just a moment. And it's an embarrassing personal story, but I will share because we're friends here, but first diabetes Connections is brought to you by Gvoke HypoPen, and you know, almost everyone who takes insulin has experienced a low blood sugar, and that can be scary. A very low blood sugar. It's really scary. And that's where Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon comm slash risk. Tell me something good. This week is about my family. We are celebrating a diaversary my son was diagnosed with type one, as I always say right before he turned two back in 2006. Which means as hard as it is for me to believe we are marking 14 years and that kid is going to be 16 pretty soon. So the story I want to tell you here for Tell me something good. And if you're a new listener, he is doing great. Maybe that's the good news story I should start off with he is happy he is healthy is independent. He drives me bonkers. I want him to do more in his care. I want him to change his sites on the spot every three days and pre bowl is 15 minutes. Every time he eats. He doesn't do that. But you know what he does so much. He's super responsible, as far as I'm concerned. And he is almost 16. So for where he is, and what I was told could happen during the teen years. I really keep my fingers crossed, I knock wood I'll swing a dead chicken if you make me. I mean, I really feel like we have a lot to be thankful for. So having said that, this is a story about how we did everything wrong. 14 years ago, let me set the table. When Benny was diagnosed, I have a daughter. She is three years older than him. So she was just five. their birthdays fall in such a way that she just turned five he was not yet to. And my brother in law. My husband's brother was living with us. It was a temporary situation. He was with us I want to say for about, I don't know, a year, year and a half. He was between jobs. We had two little kids. We both worked full time. He asked you know Hey, can I come stay with you for a little bit while I get things settled? And we said please come down and be like a nanny. We can't have you here fast enough. And it was amazing situation. It really was uncle David was just a godsend, great guy and, you know, left us and went back to a full time job and a great life and relationship in a situation where he now lives too far away. If you're listening, David, he's up in Pennsylvania. But he was there when Benny was diagnosed, which made our lives kind of easier. He had another caretaker in the house when Slade and I took Benny right to the hospital on that Saturday morning. That first weekend in December December 2 I always have to look at the date December 2 2006. David stayed home with Lea until we were ready to trade off and have her come visit and that kind of stuff. And we all learned how to do things together. So we came home Three days later, we tried to go back with our lives. Haha, you know, we were all kind of in the thick of things. And that Saturday night, the following week, Slade and I had tickets to go see a show, you know, I'm a big Broadway fan, love that kind of stuff. And David said you should go I've got this. I know just as much as you guys do. And he really did. I'll watch the kids go and your phone call away. So the theater in Charlotte, you know, we have one of these regional theaters where the Broadway shows come traveling through. It's about 30 minutes from us. Yeah, you really put the pedal to the metal 25 but 30 to 35 minutes. So we thought okay, this is good. We're all our doctor says go on with your lives. We're going to go on with our lives. David's got this. The show was Spamalot. By the way. It was you know, very funny musical comedy. And we decided to go and enjoy ourselves. We got dressed up. We went not 20 minutes into the show, maybe 30 minutes of the show Slade's phone starts buzzing, and he gets up and leaves if you are familiar with the show, this is just after he is not dead yet. And the lady of the lakes. So I'm sitting there watching this very funny show, being amused being entertained. But my husband is no longer sitting next to me and I know something's up right. If he had come right back, it might have been something easy just to question, but he's not back. I think I made it about halfway through the song that goes like this. I remember seeing that which is the song that really just goes on and on. When that ended, because I wasn't gonna run out of the theater when someone was singing people applauded and I booked it out into the lobby. And Slade was on the phone, pacing and talking and pacing and talking. Here's what had happened. David had given Benny an injection for dinner or snack, I don't even know whatever it was it gave me an injection. And remember, at this time, we're using a syringe and we're drawing up teeny, teeny tiny doses. He's getting like point two, five, maybe for 20 carbs, I think I mean, who remembers these doses, but they were minuscule. They didn't have half unit pens at the time. And they certainly didn't have quarter unit syringes. I don't think they have that. Anything like that now. So unless you're using diluted insulin, which nobody had mentioned to me during his whole toddlerhood, you know, you're really guessing at the dosage, and you're trying to eyeball these teeny, tiny poufs and wisps of insulin. So David had tried to draw up like half a unit, I don't remember the exact dose he was supposed to give was, but he gave him two full units, which was bigger than anything we had given before. It makes me laugh now because to like, it's like a speck of dust for him now, but two units when you Wait, 27 pounds is a huge deal. So what David and Slade had already done while I was sitting there watching people singing, they had already called the endocrinologist. And they had actually already gotten a call back. And that's what the phone call and the pacing, that's what was going on. When I had walked out, he was on the phone with the doctor. And of course, they advised check the blood sugar, give more carbs if needed. You know, nobody was panicking. So we didn't panic. His blood sugar was fine. David had checked it before he called he checked it after the endocrinologist called back, he was fine. It gets a little weird, because the dose had been given Well, before the phone call. It was one of those situations where David did it. And then A while later thought, did I really do that? He absolutely swears that he gave the kid two units. But two hours later, his blood sugar hadn't dropped. So my suspicion at the time was you didn't give him two units, you probably drew it up and just misread the syringe, which was very easy to do at the time, especially when you're distracted by a toddler and a five year old or the child didn't go all the way in, or something really weird happened because his blood sugar stayed steady. You know, we were checking with a meter. We did have a dexcom at the time. But he was checking him every half an hour. We left the theater, we went home. We didn't want him to have to handle this by himself. And how are we going to enjoy Spamalot, right? Stacey Simms 41:54 We're worried about Benny. We're now home, probably close to three hours after the dose is given. His blood sugar was steady. We called the endocrinologist back and they said look, it's three hours pass the dose. If he hasn't dropped, he's not going to drop you guys are okay. So we being the terrible parents that we are looked at each other and said, you know, our friend was having a holiday party that we couldn't go to because we had tickets to Spamalot. David, do you mind if we go to the party now? I swear we did. We left we went to my friend's party. And my friend is only 10, 15 minutes away from my house. And it was what 10 o'clock at night already. So we only went out for about an hour and a half. But yes, I left my sleeping baby and he never woke up. And he never even woke up with all those pokes all those finger sticks to check his blood sugar, which I'm sure David did 10 more times before midnight, he slept through the whole thing. We were all worried but not worried enough not to go to that party. Ah, I am the worst. We have always been the worst. But you know what he was safe. And our endocrinologist gave us the correct information told us what to look for helped us through it. And there was no sense as we saw it, not going to the party. So I know I'm a terrible parent. That's why I always say I'm the world's worst diabetes Mom, I still have not seen Spamalot all the way through. So maybe when it comes back through shark, I'll go back and make it through the first half of the first act. Oh my goodness. And hey, anybody dealing with a toddler or baby with type one, and those teeny tiny doses, I salute you. It's not easy. Getting an insulin pump makes it a little bit easier. But anything under the age of five is a circus of you know, type one is never easy no matter what age you are. But we're heading into 16 year old with it. And that means driving, which is an adventure for another time. Before I let you go quick reminder friends for life is this weekend, the virtual conference. And if you were able to attend in July, you know that did an amazing job. If you were there, the one thing I will say that surprised me in a very good way was how much just schmoozing. We were able to do. They had specific zoom rooms for different ages, you know, parents and teens and young adults with type one, it was great. And I really wish I had put aside more time in July to attend the conference. Because I didn't really understand how much just hanging out and socializing we'd be able to do. So I'm putting more time aside to attend this one. And I hope you can check it out as well again, link in the show notes. Hey, in the weeks to come, we're gonna have a couple of more episodes in December probably take one off the week of Christmas, even though I celebrate Hanukkah, but you know, we go with the flow. And I also want to just point out that this time of year, there are often a lot of approvals. It just seems like that last week in December, there's usually a lot of news. So stay tuned. I know a lot of delays happened because of COVID. So, you know, I'm not even sure what's been submitted to the FDA that was planned for this year. A lot of delays that way, but we will definitely be talking about it. Make sure you follow on social media for the latest and greatest. And thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much as you listen and if you've listened this long, I really appreciate it got a little chatty this week with that story about Benny and Uncle Dave. But But I appreciate you listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself. Unknown Speaker 45:10 Diabetes Connections is a production of Stacey Simms media, all rights reserved. All wrongs avenged.
In this week's episode I speak to Luke. Luke's son, Noah, was diagnosed with type 1 diabetes at just 11 months old.Luke and his wife Katie are both active in the online diabetes community. Luke explains that prior to Noah's diagnosis there were missed opportunities for diagnosis after repeated trips to the doctor. There was also no family history of type 1 diabetes prior to Noah's diagnosis. Luke's story of becoming a type 1 parent to a child at a young age is very insightful.We spoke about a number of topics including:Noah's diagnosis storyhow Luke and wife Katie have adapted to life with a toddler living with type 1 diabetesthe advice Luke would give to newly diagnosed parentsthe type 1 diabetes research projects they are taking part inI enjoyed the conversation with Luke and I hop you did too. Luke can be found at:Instagram: Wattsman10_hypodaddyTwitter: Hypo Baby (@baby_hypo)Blog: Hypo Baby BlogYou can find more information about resources mentioned in the podcast:JDRF UK - Closed-loop / artificial pancreas systemsDiabetes UK - DIY closed loop system (artificial pancreas)We are not waiting - OpenAPS.org – #WeAreNotWaiting to reduce the burden of Type 1 diabetesDiabettech blog - Diabetes and Technology - Where Diabetes meets TechExe-t1d research project - EXE-T1DDigibete - DigiBete: HomeYou can find Daniel on Instagram: Dan | Type 1 Diabetes Blogger (@t1d_dan) and Twitter: Dan (@t1d_dan)If you would like to ask a question or be a guest on the show then you can email Daniel at talkingtype1podcast@gmail.com. I read all my messages and might include your question in a future episode. Thank you for listening.A bit about the show and hostThe Talking Type 1 podcast by Daniel Newman (@t1d_dan) brings to you interviews from members of the diabetes community sharing their journeys of the ups and downs of living with type 1 diabetes. You'll hear from those who live with type 1 diabetes, provide care to those living with type 1, healthcare professionals and experts in their field.The interviews will not only provide an open and honest insight into life with type 1 diabetes that you can relate to but also provide the opportunity to learn more about the condition. Daniel will also provide his own personal insights of living with type 1 diabetes having lived with the condition along with diabetes complications for over 23 years after being diagnosed at the age of 10.Remember to hit subscribe.The information you hear on the podcast is not medical information or advice.
Moira McCarthy and Stacey answer your questions about picky eaters, fear of shots and a summer time trips to the pool or beach. They share helpful stories from their own experiences - check the links below for more help and info. Join the Diabetes Connections Facebook Group! Learn about Buzzy and Shot Blocker (pain reduction in shots) MedT's iPort Advance (what Stacey calls an inset for shots) Previous episode on Getting Diabetes Gear to Stick in the Summer In our Community Connection this week… some push back from the DIY community as the FDA targets an off label use issue. Stacey asks, isn't all T1D a bit DIY? FDA Warning RE: DIY devices Read Katie DiSimone's post about the FDA and DIY And in our Tell Me Something Good Segment - sports achievements from young and old as well as a major T1D accomplishment: The 4th person with type 1 diabetes summits Mt Everest! Taylor Adams Summits Mt. Everest with T1D History of T1Ds on Mt Everest -- :00 Show Open -What's on this week? 1:30 Stacey Welcome - Benny's away at Diabetes Camp this week! And more on the ADA Sessions in the FB Group - along with any breaking news that comes from that annual event. Make sure you sign up for the newsletter!! New stuff is coming! Sign Up For the Newsletter Here 5:10 Ask the D-Moms 38:00 Community Connection: DIY & the FDA 42:30 TMSG: Mooresville, NC baseball champs, Senior Games competitor and Taylor Adams becomes the 4th person with T1D to summit Everest ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
I was ten years into a career as a user experience designer making new digital products when diabetes blew my family's life apart. The complexity and relentlessness of the burden of care that came with my youngest daughter's diagnosis at 1.5 years old, were overwhelming. I learned that people with diabetes are always 10 minutes of inattention away from a coma. Run your blood sugar too low and risk brain injury or death. Run too high and you do cumulative damage to your organs, nerves and eyes. And as a designer and hardware hacker I couldn't accept the limitations and poor User Experience I was seeing in all the tools we were given to deal with it. Then I discovered Nightscout (a way to monitor my daughter's blood sugar in real time from anywhere in the world) and Loop (a DIY open sourced, artificial pancreas system that checks blood sugar and adjusts insulin dosing every five minutes 24/7) and the #WeAreNotWaiting community that produced them. For the first time I saw the kinds of tools I needed and true power of solutions that come from the people living with the problem. When I learned about the Tidepool's project to take Loop through FDA approval and bring it to anyone who wants to use it to give the same freedom and relief that we've experienced from it, I had to get involved. Now we are taking an open source software through regulatory approval and using real-life user data from the DIY community for our clinical trial in a process that is turning heads in the industry. We'll get into the many ways this story demonstrates ways that user driven design, open source models and a counterculturally collaborative approach with regulators are shifting the incentives and changing the landscape toward one more favorable to innovation. Bio: Matt Lumpkin is a restlessly creative person. His career has been focused on UX design and digital product strategy. His youngest daughter's diagnosis with type 1 diabetes sent him down the path of questioning why medtech design was so poor (hint: it's designed for the wrong stakeholders with the wrong incentives). He has won design awards from Stanford Med School and IDEO for his work on bgAWARE redesigning glucose monitor alerts as a haptic wearable. He consults on medtech design at carabiner.us He lives in Pasadena with his wife and three daughters who proudly attend public school. He is a Product Designer at Tidepool.org. Twitter: @mattlumpkin
I was ten years into a career as a user experience designer making new digital products when diabetes blew my family's life apart. The complexity and relentlessness of the burden of care that came with my youngest daughter's diagnosis at 1.5 years old, were overwhelming. I learned that people with diabetes are always 10 minutes of inattention away from a coma. Run your blood sugar too low and risk brain injury or death. Run too high and you do cumulative damage to your organs, nerves and eyes. And as a designer and hardware hacker I couldn't accept the limitations and poor User Experience I was seeing in all the tools we were given to deal with it. Then I discovered Nightscout (a way to monitor my daughter's blood sugar in real time from anywhere in the world) and Loop (a DIY open sourced, artificial pancreas system that checks blood sugar and adjusts insulin dosing every five minutes 24/7) and the #WeAreNotWaiting community that produced them. For the first time I saw the kinds of tools I needed and true power of solutions that come from the people living with the problem. When I learned about the Tidepool's project to take Loop through FDA approval and bring it to anyone who wants to use it to give the same freedom and relief that we've experienced from it, I had to get involved. Now we are taking an open source software through regulatory approval and using real-life user data from the DIY community for our clinical trial in a process that is turning heads in the industry. We'll get into the many ways this story demonstrates ways that user driven design, open source models and a counterculturally collaborative approach with regulators are shifting the incentives and changing the landscape toward one more favorable to innovation. Bio: Matt Lumpkin is a restlessly creative person. His career has been focused on UX design and digital product strategy. His youngest daughter's diagnosis with type 1 diabetes sent him down the path of questioning why medtech design was so poor (hint: it's designed for the wrong stakeholders with the wrong incentives). He has won design awards from Stanford Med School and IDEO for his work on bgAWARE redesigning glucose monitor alerts as a haptic wearable. He consults on medtech design at carabiner.us He lives in Pasadena with his wife and three daughters who proudly attend public school. He is a Product Designer at Tidepool.org. Twitter: @mattlumpkin
The technology and medical community were abuzz with the latest release of the Apple Watch - particularly the ECG functionality - wondering the impact this wearable device would have on hospital admissions. In this episode, hosts Reed Smith and Chris Boyer revisit the topic of wearables and medical devices, discussing how the FDA categorizes “general wellness products” vs.regulated medical devices. They also review research on if wearables actually improve people's health and what people's attitude are on trackable wellness devices. Featuring a “replay” of an expert interview with Dana M. Lewis, in which she discusses the #OpenAPS community and the #WeAreNotWaiting movement. Mentions from the Show: Whitepaper: Is Your Wearable a Regulated Medical Device? Twitter thread on the “approval” of the Apple Watch as an EKG device The New EKG Apple Watch Could Do More Harm Than Good How effective are wearable devices? The Future Of Medical Technology: Wearable Devices [Infographic] Dana M. Lewis on Twitter OpenAPS.org Find Us Online: Touchpoint podcast Twitter Reed Smith Twitter Chris Boyer Twitter Chris Boyer website Social Health Institute This episode is made possible by our sponsors, Loyal, Influence Health, & Binary Fountain
>Dana Lewis returns to the podcast for a biannual update on the latest from the #WeAreNotWaiting movement. We also discuss her Red Hat 2018 Women in Open Source Community Award, the joys of international travel, her ongoing research project, Opening Pathways, and her new book about celiac disease. You can learn more about OpenAPS at openaps.org and Dana's research at openingpathways.org. Follow Dana on Twitter @danamlewis. Go to bit.ly/booksbyDanaMLewis to check out Dana's new book. Run Time - 50:11 Send your feedback to feedback@justtalkingpodcast.com.
Dana Lewis first created #DIYPS in December 2013, just so she could better hear her her continuous glucose monitor (CGM) alarms better. Since that time Dana, and many other diabetes tech pioneers, have pushed forward with the Open Artificial Pancreas System. 5 years later we look at what Dana's doing now and what she has in mind for the future. Dana also shares what the FDA and healthcare companies can learn from the do it yourself community. We also talk about what holds back many people (like Stacey) from jumping it DIY diabetes tech and why Dana says we shouldn't let our fears stop us. Learn more about The Nightscout Project Listen to interviews with others in the #WeAreNotWaiting community here. In our Know Better segment, Stacey shares a new study about about emotions and stacking insulin, and we explain what "stacking" means when it come to diabetes and dosing. Join the Diabetes Connections Facebook Group! ----- 1:25 Stacey welcome 2:45 Find out more about our Alexa skill and please leave a review! 4:45 Interview with Dana Lewis Listen to Stacey's 2013 interview with Dana here 51:00 Know Better segment: All about emotional bolusing 59:00 Where will Stacey be? April: Touched by Type 1 May: Lilly Blogger Summit May: JDRF One Challenge with Riding on Insulin July: Children with Diabetes Friends for Life ----- Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Weston Nordgren is the Vice President of the Nightscout Foundation, and Community Liaison for CGM in the Cloud worldwide. Behind those titles is quite a story. We talk to Wes about his son’s diagnosis as an infant, their family's journey to find solutions and the power of the #WeAreNotWaiting community. Wes recently represented the CGM in the Cloud Facebook group at an exclusive international Facebook conference. He shares what he learned there and talks about his son's experience with Looping and on the new Medtronic hybrid closed loop pump. We also mention OpenAPS. In our shoptalk segment, no more chalky glucose tabs? Chris Angell says he needed something better to treat his lows, so he created GlucoLift. You'll also hear a clip of Polaroid from Truck Stop Honey's debut album. It's a very personal story and song from previous guest Amanda Jo. Ross Baker is another previous guest, Stacey calls him T1D's Marathon Man. He is set to run in the Maui Marathon on October 15th, completing an incredible mission of running a marathon in every US state and Washington DC. Find out more about Animas and their message to customers as they exit the insulin pump business. ----- 3:30 Stacey talks about Truck Stop Honey, clip of Polaroid 5:30 Animas/One Touch mention 7:00 Stacey talks about Ross Baker & the Maui Marathon 10:00 Interview with Weston Nordgren of Nightscout/CGM in the Cloud 1:01:30 Shoptalk with Chris Angell of GlucoLift ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Sign up for our newsletter here As always, thanks for listening!!
In this episode, Reed and Chris discuss the intersection of wearable technologies and medical devices, and how the sudden rise of wearable devices and the "internet of things" have driven the need for useful and usable solutions for patients and consumers alike. The hosts also touch on how hospitals should begin integrating this data into official patient records. This episode also features an expert interview with Dana M. Lewis in which she discusses the #OpenAPS community and the #WeAreNotWaiting movement.
A few years back, Scott Hanselman wrote a post some have called a seminal moment in the diabetes community. Called "The Sad State of Diabetes Technology in 2012," it sparked action, particularly in what's now known as the #WeAreNotWaiting movement. We talk to Scott about what he thinks about diabetes technology today, how he manages his own T1D and why a cross-country airplane trip is a perfect diabetes analogy. Community Connection this week is all about programs for adults with type 1. Camp Nejeda in New Jersey will host a weekend session in May. Information about that "Survive and Thrive Boot Camp," and ideas about how to begin something like that where you live. (Note: due to some technical issues, "helpful links" for this episode may not appear until 24 hours after the episode goes live. Apologies for the delay)
The Nightscout Project is an open-source DIY project that lets users see blood sugar numbers from a continuous glucose monitor (CGM) on a smartphone, computer, tablet or Pebble watch. It came on the scene in 2013 and continues to grow at astonishing speed. Stacey speaks to Kate Farnsworth, a Pebble watchface designer for the group and James Wedding, president of the Nightscout Foundation. This episode recorded at the Children With Diabetes Friends For Life conference.
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