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12 episodes with openaps
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2 episodes with openaps
2 episodes with openaps
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2 episodes with openaps
I spoke with a user of iAPS about her experience using the open source system over the last 3 months. She doesn't log carbs and calls the app "magic." iAPS is an artificial pancreas system based on the OpenAPS algorithm. Using the settings you input, carbohydrates and historical data, iAPS aims to automate insulin delivery to reduce the time you spend managing your diabetes. Today's Sponsors: Learn about Omnipod 5 Fill out T1D Exchange Registry Resources: iAPS Website | iAPS Facebook Page | Loops & Learn iAPS Sessions Follow for more: Instagram | Tik Tok | YouTube | Facebook Watch Video Podcast on Youtube This episode is sponsored by Omnipod. To learn more about Omnipod 5 and see if you're eligible for a trial, visit Omnipod.com/diabetech. You can also find full safety information, and free trial terms and conditions at Omnipod.com/Diabetech. The Pod has an IP28 rating for up to 25 feet for 60 minutes. The Controller is not waterproof. This podcast should NOT be considered medical advice. Always consult with your doctor before making changes to health care treatment. iAPS is experimental and not approved by the FDA or regulatory authorities. You take full responsibility for building and using iAPS and you do so at your own risk.
Sarah Withee spoke with us about using an artificial pancreas, learning many programming languages, and FIRST robotics. More about the Open Artificial Pancreas System can be found at OpenAPS.org or in their documentation. Some other pieces we talked about include: LoopKit: an automated insulin delivery app template for iOS github (some additional docs) AndroidAPS github (additional docs) Reilly Link is the communication method for some insulin pumps Orange Link is a Reilly Link compatible device to run OpenAPS To get involved with FIRST robotics, the place to start is FIRSTInspires.org Sarah's website is GeekyGirlSarah.com. Her programming language comparison tool is Code Thesaurus: codethesaur.us/ If you want to see small algorithms written in different languages, check out Rosetta Code Transcript
It's It's “In the News…” a look at the top diabetes stories and headlines of the past seven days. This week: a troubling new study about how many people with diabetes ration insulin, a new study looks at OpenAPS compared to traditional pumps, more research on Beta Bionics' iLet pump, an old diabetes drug might help in the fight against dementia, and 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 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 A new study shows nearly 1 in 5 adults in the U.S. with diabetes either skipped, delayed or used less insulin than was needed to save money. That comes out to roughly 1.3 million adults, or 16.5% of those who need insulin. The findings were based on data from the 2021 National Health Interview Survey, which is conducted annually by the Centers for Disease Control and Prevention and which interviews tens of thousands of Americans about their health-related experiences. It was the first time that the CDC had included questions about insulin use, though concerns about sky-high insulin prices have been reported for years. Starting Jan. 1, the Inflation Reduction Act, signed into law by President Joe Biden in August, will cap the monthly cost of insulin at $35 for seniors on Medicare. The bill, however, will leave out millions of Americans with private health insurance as well as those who are uninsured. It was also found to be more common among people with type 1 diabetes, at 18.6%, compared to those with type 2 diabetes, at 15.8% https://www.nbcnews.com/health/health-news/insulin-prices-many-adults-diabetes-ration-insulin-study-finds-rcna52287?cid=sm_npd_nn_tw_ma XX New islet cell transplant study looks very promising. Long term outcomes of two phase 3 clinical trials shows many patients didn't need insulin to maintain their blood sugar for up to eight years. It also showed that a new approach required fewer transplants than typical and was exceedingly safe. These trials included people who had kidney transplants and showed islet cell transplants for those people was safe and effective. 75 percent who initially were able to come off insulin therapy, more than half maintained total insulin independence, meaning they needed no additional insulin injections throughout the years of follow-up. https://www.pennmedicine.org/news/news-releases/2022/october/new-islet-transplant-method-leads-to-insulin-independence XX Study out of New Zealand looked at DIY diabetes tech and compared to some commercial offerings. Not sure what they were tyring to prvoe here because they looked at a closed loop system OpenAPS and compared it to a regular old pump and CGM system with no automation. No surprisingly, the people with type 1 in the AID group had much more time in range – about 14 percent more – than those using a standalone pump and CGM. No severe lows or DKA in either group. But these days, IMO, looking at an automated insulin delivery system to a pump and CGM that don't communicate is like comparing apples and chain saws. https://www.medtechdive.com/news/do-it-yourself-artificial-pancreas-diabetes/633888/ XX More good news for the iLet Bionic Pancreas. A clinical trial, conducted at 16 clinical sites across the United States, enrolled 326 participants ages 6 to 79 years who had type 1 diabetes and had been using insulin for at least 1 year. Participants were randomly allocated to a treatment group using the bionic pancreas or a standard-of-care control group that continued with their pre-trial method of glucose monitoring and insulin dosing. In participants using the bionic pancreas, A1C improved from 7.9% to 7.3%, yet remained unchanged among the control group. The iLet doesn't use carb counting – just meal announcements and it sets basal rates with just the user's body weight. It's currently in front of the US FDA, awaiting approval. XX Insulet issued an urgent medical device correction on Monday related to battery problems with a component of its Omnipod DASH system. The device uses a wearable insulin pod that's controlled by a personal diabetes manager (PDM), a smartphone-like device that does the calculations for bolus insulin doses. Insulet plans to replace the PDMs for all of its current Omnipod DASH users globally, incurring an aggregate charge of $35 million to $45 million, J.P. Morgan Analyst Robbie Marcus wrote in a Monday research note. Insulet said it received reports of some Omnipod DASH users having battery problems with their PDM devices, including the battery swelling, fluid leaking from the battery, and in rare cases, extreme overheating. In a letter to users, the company said it plans to ship updated devices to all current Omnipod DASH customers in the coming months. The battery issue applies to all of Insulet's Omnipod DASH PDMs, but the likelihood of problems may increase if the device has been in use longer than 18 months. Charging the device to a full battery and leaving it on the charger overnight also increases the risk. So far, Insulet said it has not received reports of any injuries related to the battery issues. The company advised patients to monitor their PDMs for battery problems, including a bulging back cover and the device losing its charge very quickly, overheating or emitting an odor. If patients notice any of these problems, they should not charge the device, stop using the system and switch to a backup insulin plan as soon as they can. Users can also contact Insulet for a temporary replacement device. https://www.medtechdive.com/news/insulet-battery-problems-omnipod-dash/634275/ XX MDT) announced today that it introduced a new diabetes management program for users of the MiniMed 770G insulin pump. The medtech giant calls the new program My Insights. It designed it exclusively for individuals using the MiniMed 770G hybrid closed-loop insulin delivery system. Using an individual's data, My Insight provides personalized tips, trends and reminders to help customers manage their diabetes. Its personalized recommendations come through via monthly emails with educational content. Medtronic aims to make the content relevant based on what the individual experiences. Medtronic said it represents the first diabetes management program to go beyond “generalized tips.” Instead, it offers personalized suggestions using data from the integrated insulin pump system. The company said it made My Insights available in the U.S. to anyone using MiniMed 770G. https://www.drugdeliverybusiness.com/medtronic-launches-diabetes-insights-program-for-minimed-users/ XX Some countries are seeing shortages of Ozempic, a weekly injectable meant for people with diabetes but can be prescribe off label for weight loss. Demand has gone way up since some Tik Tok and social media influencers have shared Ozempic as a weight loss drug. Diabetes groups and especially Australian advocacy groups have advised doctors to limit prescribing the drug to people with Type 2 diabetes. https://www.abc.net.au/news/2022-10-17/ozempic-weight-loss-demand-type-2-diabetes-drug-shortage/101542226 XX Back to the news in a moment but first.. 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 XX XX New research shows an older drug for type 2 might help reduce the risk for dementia. People with diabetes are at higher risk of developing dementia. These researchers looked though 500-hundred thousand past medical records and found that an older class of type 2 diabetes medication known as glitazones helps reduce a person's dementia risk by 22%. These reerahres say its very promising but they want to see more real world study and also combine glitazones with other types of treatments https://www.medicalnewstoday.com/articles/type-2-diabetes-drug-may-help-lower-dementia-risk-by-22 XX On the podcast next week.. Kerri Sparling from SixUntilMe The past episode was all about teens and type 1 – a deep dive into why teen retreats work from the people who organize a great one.. and how adults with type 1 still use the lessons they learned as teens. 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 top stories and headlines around the diabetes community this week include: A new way to sneak islet cells into the body without needing immunosuppressive drugs, routinely checking young children for T1D markets before symptoms show up, a non invasive way to measure blood glucose uses Radio Frequency, a DIY movement publishes in the New England Journal of Medicine and more! Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here 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 French biopharma company Adocia has established a first proof of concept for its AdoShell Islets implant. This was in rats.. but they achieved glycemic control without insulin injections and without immunosuppressive drugs for four months. AdoShell Islets is an immuno-protective synthetic biomaterial that secrets insulin in response to blood glucose levels. The physical barrier formed by the AdoShell biomaterial allows the implanted cells to be invisible to the host's immune system while allowing the necessary physiological exchanges to occur for the survival and function of the islets. These researchers are optimistic that their unique approach can be translated from one species to another. https://www.labiotech.eu/trends-news/adocia-implants-diabetes/ XX Can starting a closed loop system right away help keep kids with type 1 in the honeymoon stage longer? New study says.. probably not. The latest findings are from the Closed Loop From Onset in Type 1 Diabetes (CLOuD) trial, a multicenter, open-label, parallel-group, randomized study, published online September 7 in the New England Journal of Medicine by Charlotte K. Boughton, PhD, and colleagues. In CLOuD, 97 youths aged 10-17 years were randomized to hybrid closed-loop therapy or standard insulin therapy (control) within 21 days of type 1 diabetes diagnosis. I found this a bit confusing, in the standard insulin therapy groups, participants could switch to insulin pump therapy or use flash or continuous glucose monitoring (CGM) or approved closed-loop systems if clinically indicated. So this isn't comparing an AID system to MDI. At 12 months, there were no differences after a mixed-meal tolerance test, with levels declining in both groups and dropping further by 24 months. Interestingly, they said glycemic control didn't differ significantly between the two groups. https://www.medscape.com/viewarticle/980356 XX Moving closer to a non-invasive way to measure blood glucose. The GlucoRx BioXensor uses radio frequency technology alongside a multiple sensor approach to measure blood glucose levels every minute. This looks to be about the size of a Libre 3 or Dexcom G7.. It's said to have smart alarms and remote monitoring capability and just sticks on the skin. The MARD is 10 point 4, which is less accurate than CGMs on the market now, but much better than any other noninvasive device to make it this far. In addition to measuring blood glucose the makers say it can measure oxygen levels, ECG, respiration rate, heart rate, temperature, activity, sleep, and early fall detection. Pivotal clinical study later this year and then the say they'll submit for European approval. https://www.med-technews.com/news/latest-medtech-news/glucorx-and-cardiff-university-to-bring-out-non-invasive-con/ XX RESEARCHERS in Oxford have launched the first UK study in the general population to test for early markers of type 1 diabetes, before children develop symptoms or need insulin. They're offering a finger stick test when children have their pre-school vaccination. Very small start, only 60 kids, but these researchers say with a recent, more accurate test to check for markers early on, they hope to find more children before DKA sets in. https://www.oxfordmail.co.uk/news/20977659.oxford-scientists-launch-study-early-markers-type-1-diabetes-children/ XX The first Randomized Controlled Trial on open source automated insulin delivery (AID) is now published in a peer-reviewed medical journal. Big news for and from the we are not waiting crowd. The CREATE Trial evaluated the efficacy and safety of an open-source system using the OpenAPS algorithm in a modified version of AndroidAPS. This study included children and adults and found that across all ages, time in range was 14 percent higher than those who used commercial hybrid closed loop systems. There's more to it, and I”ll link it up, but this study concluded that a widely used open-source AID solution, works and is safe. Congrats to Dana Lewis and all the researchers involved. https://diyps.org/2022/09/07/nejm-publishes-rct-on-open-source-automated-insulin-delivery-openaps-algorithm-in-androidaps-in-the-create-trial/ XX Back to the news in a moment but first.. 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 Medtronic is waiting for FDA clearing of the new 780G.. already approved in Europe. New study results published in The Lancet Diabetes & Endocrinology, Medtronic announced Thursday put the AID pump up against multiple daily injections plus CGM. Small study, 82 people, all with an A1C over 8. After using the 780G for six months, the group saw a reduction of 1.4 percent in their levels with a quarter of that group dropping their A1C below 7. None of the MDI group dropped to that level. Time in range saw most improvement overnight. The MiniMed 780G system has been cleared in Europe since 2020. Medtronic submitted it to the FDA for U.S. approval in the spring of 2021 but is still awaiting a decision, slowed down by the roadblocks caused by a late 2021 warning letter from the agency that called out quality control issues at the California headquarters of its diabetes business. https://www.fiercebiotech.com/medtech/medtronics-new-minimed-insulin-pump-adds-27-boost-time-range-study-finds XX Change at one of the top posts at Dexcom. Jake Leach moves from Chief Technology Officer to Chief operating officer. He's been at the company since 2004 to work on the first commercial Dexcom CGM system. He's been a frequent guest of the show and we hope that continues. https://www.businesswire.com/news/home/20220831005236/en/DexCom-Promotes-Jake-Leach-to-Chief-Operating-Officer XX Next week we're looking ahead to the New York City Marthong. Beyond Type 1 puts together a gret team each year and I'm taking to one of the runners. He's also nabbed a spot in the world series of poker – which do you think is tougher on his type 1 diabetes? This past episode is all about Omnipod 5 – a panel of people who've sued it for a few weeks now.. and the director of medical affairs to answer your questions. 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.." got a few minutes? Get caught up! Top stories this week: The Federal Trade Commission probes the prescription drug middleman industry, once a week basal insulin moves forward, DIY insuln dosing systems get a thumbs up at ADA Scientific Sessions, Sernova's stem cell system releases great findings and more! Learn more about the T1D Exchange 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. we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast. 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 Federal Trade Commission will launch an inquiry into the prescription drug middleman industry.. requiring the six largest pharmacy benefit managers to provide information and records. They're looking at PBMs such as CVS Caremark; Express Scripts, Inc.; OptumRx, Inc.; Humana Inc and more. The largest PBMs are now vertically integrated with the largest health insurance companies and wholly owned mail order and specialty pharmacies. In these roles, pharmacy benefit managers often have enormous influence on which drugs are prescribed to patients, which pharmacies patients can use, and how much patients ultimately pay at the pharmacy counter. https://www.ftc.gov/news-events/news/press-releases/2022/06/ftc-launches-inquiry-prescription-drug-middlemen-industry?utm_campaign=https://www.ftc.gov/news-&utm_content=1654622484&utm_medium=social&utm_source=twitter XX Confirming what many of you have known for years.. an open-source automated insulin delivery system -- also known as a do-it-yourself system -- was both safe and effective for patients with type 1 diabetes. This is from the CREATE trial, designed to test DIY system, presented for the first time at the ADA Scientific Sessions. This system was made up of the OpenAPS algorithm from a version of AndroidAPS implemented in a smartphone, paired with the DANA-i insulin pump and Dexcom G6 continuous glucose monitor. The researchers previously published additional information in the Journal of Diabetes & Metabolic Disorders. https://www.medpagetoday.com/meetingcoverage/ada/99109 XX Stem cell study showing great results. Sernova says the first three patients of six total continue to be insulin independent following treatment. One of the patients has been insulin-free for more than two years, while the other two have been free of the need for medication injections for six months and three months, respectively. At this point, the other three patients in the study have not had the device long enough to determine measurable results. The first three all have A1Cs in a normal, nondiabetic range. Sernova's Cell Pouch is an implantable device that releases the primary donor islets. The device is implanted under the skin in a minimally-invasive procedure. We're talking to Sernova for next week's show; long way to go here but another good result for stem cells. https://www.biospace.com/article/sernova-cell-pouch-device-keeps-type-1-diabetes-patient-insulin-free-for-two-years/ XX Getting closer to once-a-week basal insulin. New study says Novo Nordisk insulin icodec achieved better results than Lantus in some aspects of the study and that overall it was – this is interesting wording – non-inferior. Another previous study showed it also matched well to Tresiba, but that Tresiba caused fewer lows than the once-weekly basal. This study was about type 2 diabetes but insuln icodec is in other trials for people with type 1. https://www.biospace.com/article/novo-nordisk-scores-phase-iii-insulin-win-strengthening-market-position/ XX New partnership between Diabeloop – which makes an automated insulin algorithm - and SOOIL which makes pumps. These are two French companies that have been working together since 2020 but this new announcement was delayed by COVID. They want to bring the product – Diabeloop's DBLG-1 I controller and SOOIL's Dana ACE Pump to the US, Europe and Korea. https://www.drugdeliverybusiness.com/diabeloop-sooil-automated-insulin-diabetes/ XX Civica continues to move ahead with the development of its affordable insulins. They've announced they'll partner with the German company Profil for the clinical trials. Civica plans to set a maximum recommended price to the consumer of no more than $30 per vial and no more than $55 for a box of five pen cartridges. Contingent on FDA approval, Civica anticipates that its insulins will be available for purchase beginning in 2024. https://www.healthcarepackaging.com/supplier-news/news/22262909/civicarx-civica-selects-profil-as-clinical-trial-partner-for-affordable-insulin-initiative XX New study out of Israel shows that obesity in teenagers may lead to type 1 diabetes a few years later. The study, of nearly 1.5 million Israeli teenagers, found that those who were obese were twice as likely to develop type 1 diabetes by young adulthood, versus those in the normal weight range. The senior researcher on the study says it's not clear why obesity would raise the risk of type 1. They think it may the a trigger in people with genetically susceptible. Obesity also has other effects — including vitamin D deficiency and alterations in the gut's bacterial makeup — that could impair immune function. https://www.usnews.com/news/health-news/articles/2022-06-06/obesity-in-teen-years-might-trigger-type-1-diabetes XX Right back to the news in a moment but first we've got a new sponsor. As I mentioned, The T1D Exchange Registry is an online research study, designed to harness the power of individuals with type 1 diabetes. It's a research study conducted online over time, designed to foster innovation and improve the lives of people with T1D. 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. By sharing opinions, experiences and data, patients can help advance meaningful T1D treatment, care and policy Sign up at T1DExchange.org slash Stacey (that's S-T-A-C-E-Y). XX XX XX On this week's long format episode, you'll hear my conversation with Dexcom's CEO Kevin Sayer. We get more information about the G7 launch, after FDA approval of course and I asked him your questions about everything from IOS issues to airport scanners. Next week, Sernova joins me to explain their stem cell pouch technology 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.
ResourcesDana's TedTalk: Open Artificial Pancreas System: https://www.ted.com/talks/dana_lewis_open_artificial_pancreas_systemDana's books: https://diyps.org/books-by-danamlewis/Loop Docs documentation: https://loopkit.github.io/loopdocs/Open Artificial Pancreas System project (#OpenAPS): https://openaps.org/Diabetes technology resources: www.danatech.orgThe Artificial Pancreas: Where We Are, Where We're Going: https://journals.sagepub.com/doi/full/10.1177/2325160315572249
After building her own DIY “artificial pancreas,” Dana Lewis helped found the open source artificial pancreas movement (known as “OpenAPS”), making safe and effective artificial pancreas technology available (sooner) for people with diabetes around the world. She authored the book, "Automated Insulin Delivery: How artificial pancreas “closed loop” systems can aid you in living with diabetes", to help more people understand automated insulin delivery systems, in addition to a series of children's books such as "Understanding Automated Insulin Delivery: A basic book for kids, family, and friends of people living with diabetes", which is also available as a free animated video. She is currently researching numerous diabetes-related data science and open source artificial pancreas system projects. Bon talks with Dana about why she designed an “artificial pancreas”, patients as the experts, and how we can reduce stigma among people living with chronic diseases.
Au programme de l'émission : téléphonie mobile et libertés (Fairphone et /e/); Open Insulin (ouvrir la science pour sauver des vies); chronique d'Antanak sur l'écrasement des données sur les disques durs. Émission Références Transcription Contact Libre à vous !, l'émission pour comprendre et agir avec l'April, chaque mardi de 15 h 30 à 17 h sur la radio Cause Commune (93.1 FM en Île-de-France et sur Internet) puis en podcast. Au programme de la 118e émission : sujet principal : téléphonie mobile et libertés avec Agnès Crepet de Fairphone (responsable de l'équipe informatique et de la longévité logicielle) et Gaël Duval fondateur de /e/ chronique « Pépites libres » de Jean-Christophe Becquet, vice-président de l'April, sur Open Insulin - ouvrir la science pour sauver des vies chronique « Que libérer d'autre que du logiciel » avec Antanak sur l'écrasement des données sur les disques durs quoi de Libre ? Actualités et annonces concernant l'April et le monde du Libre Réécouter en ligne Votre navigateur ne supporte pas l'élément audio : écoutez l'émission (format OGG) ou format MP3. podcast OGG et podcast MP3 S'abonner au podcast S'abonner à la lettre d'actus Podcasts des différents sujets abordés Chronique de Jean-Christophe Becquet sur Open Insulin - ouvrir la science pour sauver des vies (format OGG) (et format MP3) (5 minutes 50 secondes) Téléphonie mobile et libertés avec le Fairphone et /e/ (format OGG) (et format MP3) (59 minutes 6 secondes) Chronique d'Antanak sur l'écrasement des données sur disque dur (format OGG) (et format MP3) (10 minutes 10 secondes) Quoi de Libre ? Actualités et annonces concernant l'April et le monde du libre (format OGG) (et format MP3) (4 minutes 49 secondes) N'hésitez pas à nous faire des retours sur le contenu de nos émissions pour indiquer ce qui vous a plu mais aussi les points d'amélioration. Vous pouvez nous contacter par courriel, sur le webchat dédié à l'émission (mais nous n'y sommes pas forcément tout le temps) ou encore sur notre salon IRC (accès par webchat). Vous pouvez nous laisser un message sur le répondeur de la radio en appelant le 09 72 51 55 46 toc_collapse=0; Sommaire Personnes participantes Galerie photos Référence pour la chronique de Jean-Christophe Becquet Références pour la partie sur Fairphone et /e/ Références pour la chronique d'Antanak Références pour la partie « Quoi de Libre ? » Pauses musicales Licences de diffusion, réutilisation Personnes participantes Frédéric Couchet, délégué général de l'April Agnès Crepet de Fairphone (responsable de l'équipe informatique et de la longévité logicielle) Gaël Duval fondateur de /e/ Isabelle Carrère d'Antanak Jean-Christophe Becquet, vice-président de l'April Isabella Vanni coordinatrice vie associative et responsable projets à l'April (à la régie) Galerie photos Vous pouvez voir quelques photos prises pendant l'émission. Référence pour la chronique de Jean-Christophe Becquet Open Insulin (en anglais) Open Insulin Project sur Wikipedia (en anglais) Counter Culture Labs Insuline sur Wikipedia en français et en anglais Diabète de type 1 sur Wikipedia La déclaration de John Macleod à propos de la cession des droits sur l'isolation de l'insuline à l'Université de Toronto (en anglais) Les biohackers atteints de diabète fabriquent leur propre insuline Les biohackers découvrent comment rendre l’insuline 98% moins chère Le projet Open Insulin d'Oakland vise à perturber le diabète Open Insulin, la bataille du diabète DiY Visite aux Counter Culture Labs, berceau du biohack californien L’insuline est un médicament essentiel. Pourquoi est-ce si cher ? OpenAPS (Open Artificial Pancreas System) (en anglais) The Open Insulin Project: A Case Study for ‘Biohacked’ Medicines (en anglais) Toutes les chroniques de Jean-Christophe Becquet Références pour la partie sur Fairphone et /e/ Fairphone Page web de e Foundation Téléphonie mobile et libertés (émission Libre à vous ! du 6 novembre 2018) Cash Investigation Nos données personnelles valent de l'or !, France 2, 20 mai 2021. Are iPhones Really Better for Privacy?Comparative Study of iOS and Android Apps, Konrad Kollnig, 28 sept 2021, Reprise des débats de la proposition de loi« Réduire l'empreinte environnementale du numérique en France », le 2 novembre 2021 au Sénat Références pour la chronique d'Antanak Antanak Toutes les chroniques d'Antanak Références pour la partie « Quoi de Libre ? » Journée Ada Lovelace 2021 B-Boost 2021 (14 et 15 octobre 2021 à l'Espace Encan de La Rochelle) L'Expo des Ordis Libres Une association peut-elle se passer des Gafam ? (conférence le 13 octobre 2021 de 18h30 à 19h30, Quimper) Atelier pratique : tester des logiciels libres utiles à une association (le 23 octobre 2021 de 10h00 à 12h00, Quimper) Consulter l'Agenda du Libre pour les autres événements en lien avec le logiciel libre Pauses musicales Les références pour les pauses musicales et autres séquences sonores (virgules…) : Notre pad pour proposer des musiques diffusées sous une licence libre Gaia par Nova noma (Creative Commons CC BY 3.0, 3 minutes 25). 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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.
Ben West was a key organizer and architect of Nightscout and OpenAPS software. Even after all of the DIY and commercial development of the last ten years, he says we've barely scratched the surface of removing the mental and physical burdens from people with diabetes. Among those burdens, he says, is what he calls the onus to bolus - the responsibilities of diabetes that even the most advanced current software can't totally relieve. Ben is now the CEO at Medical Data Networks which has launched its first venture: T1 Pal. Read the Nightscout email Stacey mentioned (click here) 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! Episode Transcription (rough draft) below Click here for iPhone Click here for Android Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities Gvoke Hypopen the first premixed 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 0:26 this week talking to someone who is deeply technical, but also deeply thoughtful, who has been an incredible part of the Do It Yourself movement over the last 10 or more years. But who says we've barely scratched the surface of removing the burdens mental and physical from people with diabetes. So welcome to another week of the show. We aim to educate and inspire about diabetes with a focus on people who use insulin. I am Stacey Simms. And yes, this show is already a little different sounding here at the top no big intro or tease. And that's because my interview with Ben West is massive. It is very long. It is the longest one I have done so far on this show. But it is well worth your time. I am so excited to bring you this interview with Ben Ben West was a key organizer and architect of the Nightscout and open APS software. He is now the CEO at medical data networks which has launched its first venture T1Pal, I think Ben influenced or work with or sometimes both just about every person I've talked to under the we are not waiting umbrella. And if you're not familiar with that, if this is your first episode, welcome, but we are not waiting is kind of the rallying cry that became a hashtag back in 2013. And if you are new, I use it as a keyword you can search for it all one word, we are not waiting over at Diabetes connections.com and see every episode that has featured those incredible do it yourself, people the community that really rallied together and push the technology side of diabetes forward, I believe many many years ahead where it would have been otherwise, as I said, it is a very long interview. But you know, it's a podcast, listen in chunks. Stop, start, you know, however you want to do it. But please, I really hope you'll listen to Ben because he has so much story to tell and a lot of thoughts on how diabetes care really needs to improve. In the short time since I spoke to Ben, there has been a bit of a discussion within the Nightscout group about his business. It is part of an ongoing debate about the future of Nightscout and the future of open source in type one, Ben has the full support of the night scout foundation. In fact, they sent out an email on that and some other issues. And I will link to that in the show notes. I think it's a very good read. In addition to touching on this issue, it is a great way to catch up on what's going on in that space. So we'll get to Ben West in just a moment. But first Diabetes Connections is brought to you buy Gvoke Hypopen . And you know when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon, there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly 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.com slash risk. And this is a good time to remind you that this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Ben, it's great to talk to you. Thanks so much for jumping on and sharing some time with me and my listeners. Ben West 3:55 Oh, thank you, Stacey. I'm happy to be here. Thanks for inviting me. Stacey Simms 3:59 I'm not even sure where to start. I have so many questions I want to ask you and there's so much history here. So maybe we just start if you don't mind. Back in college when you were diagnosed. You were student right? You were young adult. Ben West 4:12 Yeah, I was a college student when I was diagnosed and I had all the classic symptoms where I you know, I was going to the bathroom a lot and just didn't know what was happening. My diagnosis story is I went through this for probably a week and one night I realized I had gone to the bathroom like seven times in the one night and I realized that means if that's once an hour like what sleep did I get last night. I'm nowhere near eight hours of sleep. This seems like a serious problem. So I went to a health clinic in my college town. And they said well, you're a skinny young adult, so we don't know what's going on with you. Maybe you did eat something and you didn't tell us I wasn't eating anything either. And they sent me home with some pills and said call us in two weeks. Someone through the grapevine heard that that didn't sound quite right actually came and interrupted one of my music lessons and said, you know, you need to go to the hospital there. Oh, wow, they're expecting you there. So I went to the hospital, and they checked me in over the weekend and diagnosed diagnosed me with type one. Wow, Stacey Simms 5:13 you were lucky, right? Lucky that they interrupted your lesson there. Ben West 5:16 Yeah, you know, I mean, I've heard a lot of stories during the work that I do. And yes, as diagnosis stories go that I you know, that's pretty mild. Yeah, Stacey Simms 5:26 I guess I should ask you some technical questions from the very beginning. What were you using? I assume that in 2003, you didn't immediately start tinkering with an insulin pump. Right? You You went on a more traditional routine at the start? Ben West 5:38 Well, I actually had to drive 45 minutes to clinic and Little Rock house in a different part of Arkansas going to college. And I had to drive 45 minutes to get to an endocrinologist and the endocrinologist at that time that I thought I was lucky to be getting into the specialist where they actually deal with, they actually specialize in diabetes here. And I met with the nurse, the PA, and the representative from Medtronic was actually in the room. They actually said, You seem like a smart young lad, we'd like to get you out a pump as soon as possible. And it turned out as soon as possible was like nine, you know, nine months later. So I went through the whole syringes and shots and meters and got on the on the pump. But at that time, they actually told me Yeah, the benefit of going on the pump is dispenses insulin automatically. And in the future, we're going to have CGM. There's some CGM already in the works. Those will be here sometime. And then when you get the CGM and the pump combined, it does like all these things together, right, like so I understood right away what they're talking about in that office very early on. Okay, you got you can measure glucose, and you got this pump. And in theory, it should be doing all of these things together. At that time, they even said, You know what, they even have a patient in California right now, it's got a fully implanted version. So sometime in the next five years, we're gonna have a fully implanted CGM insulin pump combo, it'll do all the work for you. This is all just temporary. That's what they told me. Stacey Simms 7:01 2003 Yeah, just to be clear, though, Ben, the Medtronic rep was in the room with you at your doctor's appointment? Ben West 7:09 Yeah. Wow. You had some introduction? I was actually I was glad they were honestly, that certainly seemed to be the, you know, take these pills and call us in two weeks approach. Stacey Simms 7:20 Sure. Yeah. It also beats a bunch of other people who had their doctor say five years to a cure. I mean, yeah, you know, there's a lot of really bad ways to be diagnosed and to have those first conversations, but man, that's fascinating. Who was the person in California who had an implanted pump and CGM? What was this like, fantasy made up? No, Ben West 7:39 I think I know, I believe him. I, I've toured the Medtronic facilities, again, during the work that I do, and they've invited me over, and they have a hallway of all kinds of awesome stuff that, you know, never made it to market or, you know, there's a lot of cool things that go on behind the doors. I'm still using a 515. I think that was in 2008. So certainly, I I'm a big believer in what they do. There is a lot of potential that I think is clearly been untapped behind this technology. Stacey Simms 8:12 So fast forward nine months, you jump on to your insulin pump. It's not hooked up with a CGM. At the time I would assume. Ben West 8:19 No, it the CGM didn't exist yet. Yeah, it wasn't on the market. Yeah. Stacey Simms 8:23 What was your experience? Like with the pump? Ben West 8:25 Oh, it's okay. It's fine. I preferred it to the shots. But everything's got trade offs. Right. I had at the time I, you know, was going in or wasn't music major. And I so I had performances that are assessed as part of my official grade. And, you know, I'd go in for these performances, and some one of the teachers would tell me hide that thing. You know, they had wires hanging out, right? And I told him, you know, I'm not trying to hide anything, I shouldn't have to hide it. And he told me, You shouldn't show it off. I thought, wow, here I am going for a performance. And that's, that's the last thing I want to be thinking about right now. Sheesh, Stacey Simms 9:00 did you win that fight? Or did they make you hide it? Ben West 9:03 If you're a college student working for a grade? Yeah, you're gonna, you're gonna put it away real fast, right? I mean, that's terrible. Stacey Simms 9:11 What made you start thinking about tinkering with stuff? Because you started doing that on your own is my understanding, right? This was before you met a lot of people in the community that you started, I don't want to say taken apart, I'll let you tell the story. But you started doing this stuff in 2008 2009, Ben West 9:28 the winter of 2009 into 2010. I remember that's when I started with a different focus. Actually, I don't know if you've talked to Scott hanselman at all, but he's, he's known. He's known for saying that every person with diabetes ever, right? The first thing they do is they start working on on something less less than the burdens here. And actually, that was true, right? As I was diagnosed, I had some experience as a computer science minor with some programming, and often my side projects, and I remember I built a dashboard. Actually, in 2003, right after I was diagnosed, that allowed me to enter in all the information into a database, right? Because I was walking around with, you know, three by five index cards, trying to write down all these carbohydrates and insulin injections. And it was getting really tedious. But I did that for years with pen and paper and pencil. And I thought, surely, why are the doctors giving me a hand drawn curves on napkins? Like, what is that about? Why are they sketching on these pieces of paper and the way that they were explaining this to me in the hospital, I thought they were going to show me a full on simulation that showed how my body was working. I've been watching too much Star Trek. Stacey Simms 10:44 Well, you know, I'm with you. We expected things like that, too. When you said you made the dashboard. What did you use for the interface? Was it computer was it? Ben West 10:53 Yeah, it was this was before web 2.0. This was all PHP and HTML. And I realized I was horrified. At the result, I realized I was never going to use it. It was a wall of inputs, where it's just like tons of inputs. And I wrote for times, and dates and readings. And I realized there's no way I'm going to use that. Look at it. Why would anyone use that. That's why I'm going to use pen and papers, because they're the software for this is very difficult. Then web 2.0 happened, there's a bunch of things in the 2000s, as we approached into 2010, that I, you know, I graduated school, I got into industry moved to San Francisco, the hardest Silicon Valley doing, you know, web dashboards for companies, professionally, where we're really solving people's problems where if you have this complicated problem, you can share the link with a view of that problem, and the tools for solving that problem with someone else. And that ability to share that link made the possibility for solving problems collaboratively possible in new ways, transformative ways that really fundamentally change the workflow for solving problems. So that idea really got into my head professionally, as we kind of approached 2009 in 2010. I had tried my first CGM about five years later, right, so around 2008. And the experience with that CGM was was not great. I had to go through insurance, right, they said, I had to get a new insulin pump to get to the integrated system that would read onto the insulin pump. The insurance said, we're not going to pay for that for this new one. And not only that, but according to our policy, you should never have gotten one. So that seems like an issue. Yeah. So it took us It took another nine months, right. And, you know, it goes to the appeals board. And the appeals board comes back and says no insurance, you should, you know, that's medically necessary, she should pay for it. So I finally got the pump in the CGM. And like a lot of people that I see on social media that are excited by the promise of the benefits of this new technology, I tried to really make it work for me, right, I got all the glue out. Skin all louder than the adhesive and I got the I got it covered, right with all the contact stuff. And then I'm going out for yoga, right and it's hot, and I'm doing you know, bendy stuff. And you know, you take off your shirt is a lot of people do. And then you're in a shirt, you realize you're the only one with like all this stuff. And it's like, it's not just one thing, it's the air, you got your pump over there. And he got your CGM patch over here. And it's like, it's not working out like at night. It's itchy. You know, it tickles. Except it's not tickle, it's you realize it's, it's itchy. And then you realize to your heart that that's actually the chemical burn that's happening with adhesive in your skin. And then the things alarming and I'm getting sick of the readings, I get data, what they call data overload, right where it says 240. And I feel like you know, I don't feel very good. And I take a bunch of insulin. And then, you know, an hour later says, well, you're 230 or whatever. So I don't like that. I still don't like that. So I'm going to take even more insulin. And then yeah, three hours later, you know, your doubt at 60. And the things reading 110. Right. And, you know, you're really not feeling good. This thing, made my life a mess. And I decided I'm gonna have to quit. And I was horrified that I was not going to use this thing that I had gone through so much effort to get to this point to be able to use it and that I wasn't going to get any benefits out of it. And the slap in the face for me as someone that was working on these on these systems of systems that were connected through the internet, and seeing the innovation take off and seeing the technology transform, collaborative decision making. The slap in the face for me was that this data was stuck on this little two inch display in my pocket. And there was like there was no way to get that data where other people could see it or like my doctor could see it where like app developers could put it into the simulator and make a simulator if one was missing, and 2009 and 2010 that really didn't sit with me anymore. So I thought apparently I have some skills here. And, you know, maybe I should try applying them just to see if I can get a time series. You know, wouldn't that be neat? If I can just get a little time series, you know, off the device that I use? Wouldn't that be kind of neat? Stacey Simms 15:11 All right, I'm gonna stop you there. But as the time series, Ben West 15:14 just the normal chart that we see where we've got data points along some time. So you've got three hours of time on the chart, just like we see with any other glucose traces data, you've got one dot every five minutes. And that happens, because you get every dot that you see is one of those data points. If you can get a bunch of data points over time, you can generate that time series. Stacey Simms 15:37 Now I know a lot happened, you know, in those years between 2008 or 2009. And then 2013, when you started a tight pool, can you take us a little bit through that time, how you met people how you got connected with the diabetes community? Right back to Ben answering that question. But first Diabetes Connections is brought to you by Dario. Health. And you know, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels. Find out more go to my Dario comm forward slash diabetes dash connections. Now back to Ben answering my question about how we found and got connected with the diabetes community. Ben West 16:48 I need to get more serious about my problem solving. And that means if I want to help, as soon as it seems to get a lot of ground to cover, so if I need help, I need to ask a well formed questions in a targeted way. And I thought, you know, if I need help, the people that can help me are probably other people with diabetes. And so I started looking around on all kinds of social media, I was on to diabetes, for the really early platforms, and several others, there's diabetes has that and there was there are a couple of organizations before Twitter was even really becoming popular. So I kind of reached out on some of those and found some people disagreed with the things that I was expressing they, some people thought that I should just feel grateful for the devices that I had. Stacey Simms 17:28 I remember this, there was a lot of movement at that time, because I was on some of those boards to where it was, Hey, you know, it's it's okay for now. Like it's better than it was we're not testing with urine. We're not doing right. We're things are changing. Why do you want so much data? He was an interesting time. I didn't mean to interrupt you. But I remember that. Ben West 17:47 Yeah. It's interesting that for you to say that, thank you for remembering that that really puzzled me. It emphasized for me How important was to frame the right questions. Partly because of that those disputes, I started really focusing on the advocacy of data access. And that became my touchstone issue. Well, up until very recently, I would say, well, I've shifted recently towards embracing language matters a bit more. One of the things I've learned over the last 10 years, I think, is that language matters. And in this data access issue, are actually the same issues with the same solutions. And we will get into that. But Stacey Simms 18:23 yeah, we'll definitely talk about that. And just trying to, you know, to kind of get the timeline here, but yeah, so you, you've got this really interesting movement within the community, but it's a small part of the community. As I said, I was there. I don't think I grasped it at all. I mean, I had a little kid, my son was a toddler at the time, you know, he was diagnosed in 2006. So I was getting into all of this, but I was definitely more of the rah rah cheerleader, kind of let's do the Big Blue test. If you remember to diabetes, you probably remember that rather than how can I free the data because we didn't have a Dexcom or a CGM for many years. Ben West 18:53 So at that time, right at the time, I was already familiar with things that have happened in the tech world, the things that, you know, the worldwide web, the web technology that we use, has gone through this where there's lots of companies involved, some of them compete. And in fact, I remember on one of my job interviews, I was shocked to hear the interviewer say, Oh, yeah, we're partners with the, you know, these other people. I said, Wait a minute, are they competitors for this other product? And they said, Yeah, you know, we compete and we cooperate. We do both, you know, it's not, it wasn't an issue in other industries. And somehow innovation that that's unlocked. Now, we have finance, we have healthcare, we have every sector of life we do online now. And if you're not doing it online, it's because you're doing it on your mobile. And actually, it turns out that's done online also. Right, yeah. Behind the scenes. And so that's the same transformation that I saw happening everywhere, regardless of the problem space of even for the most complicated problem spaces. And so I knew that what we need the thing that made that possible on the web, and on the internet on the web, it was Use source. So any web browser that you have, there's a function where you can go in and edit. And you can say view source. And it shows you all of the source code that's used to present that web page for you. It turns out that that's a critical part of that innovation to market pipeline, because more people are able to access the data that makes the thing go, that DIY access, if you will, for the web, that view source that allows anyone to get access to it, that does a couple things. One is that it gives more people access to making things and that network connectivity is what allowed a lot of innovation that we see, in 2008. Nine, that's when I started talking about data 2010. And yeah, through 2013, I started to code switch, which means that I talked about data in the most austere terms possible, in order to attract those other folks that already understood how important that was. So that together with them, I could look to build this ecosystem so that people would start to get it, I knew that if we could deliver a couple of applications that utilize this open architecture, this open ecosystem, the feature set would grow, the popularity would grow. And that would start to shift the things that people were talking about that people would start to talk about, we want access to the data so that we can get things like this, we want access to the data so that we can have bring your own device, we want access to the data so that we can get these innovative systems on the market more quickly. Stacey Simms 21:37 So put it in perspective for me if you could, one of the touchstones that I come back to again and again, is that D data meeting in 2013? That diabetes mind and Amy tendril put together where we are not waiting was written on the whiteboard. Where were you during that time? Ben West 21:54 Yeah, I was in the room. There are about a dozen folks in the room. Sarah creepin. Was there a Jana Beck was there, Joyce Lee? Was there, Amy tedric was there? You know, Howard look was there late despereaux. Was there john kostik. And, you know, a bunch of Brandon arbeiter, a bunch of those core typu folks were there. The takeaway, as it's been said many times before, was, you know, john kostik, was there talking about how he had utilized this technology to get some benefits for his son, that was his big story was I really care about my son is my job to deliver these benefits, I'm going to do it somehow, whatever it takes, that's what I'm going to do. And Layne came along and said, You know, we've got this experience with operator fatigue, in control rooms with complex processes that never shut down. And here's the things that I've learned. And here's the display that I put together, and I call it nightscout. And this was before, what we now think of as nightscout didn't really exist. This was before that this was like when there were separate pieces, and like different projects, everyone was just blown away by nightscout. In particular, this idea of what john was doing, getting the data and what Lane was doing, having a really smart interface for it, that and having it operate in real time gave us a really crisp, clear vision of what are the kinds of benefits that we should be talking about that we should be expecting that we should be seeing in the next 12 to 18 months? What is it feasible to make technically. And it turns out some really cool things were technically feasible. Stacey Simms 23:26 When I speak to people from the DIY movement, or you know, whatever you want to call it. When I talk to you folks, over time, I have learned never to really ask well, what do you do? Right? I know, it's very, very collaborative. And so I stopped asking that question. But I would like to know, if you don't mind, could you share kind of what you were working on? Well, that's Ben West 23:47 first t data, I was tide pool had just gotten started. So I was actually employee, I was one of the very early employees tide pool. So I was working with tide pool as an engineer trying to launch the MVP, our very first shipping product, we were trying to get that up off the ground from prototype and into production. So I was spending a lot of time on that. On my own time, I was spending a lot of time you know, the reverse engineering stuff, I was spending a lot of time really focusing on on Medtronic pumps, I realized that there were a bunch of devices. And I thought about the network of each kind of device needing some code to work with it. And I had a piece of code for every type of device. And so I was focused kind of on that making sure that I was framing Well, well formed questions, putting them out there saying here's a project just to talk to the Omnipod. Here's a project just to talk to the Dexcom. Here's a project just to talk to the pump. And then here's the thing that can kind of use them all. here's here's some of the title stuff. And so I didn't actually have access to CGM myself, I didn't actually have access to a lot of working stuff. What I had access to was my own research on my pump stuff, which was my main focus and then I had already started networking out and contacting Layne and these other folks, you know, Scott Lybrand and Dana Lewis, meeting all these other folks, and not just in diabetes, you know, for example, Dave bronkart and Hugo compost, I met them going around doing things, advocacy work on data access and privacy and sharing, I would meet those folks and connect them also to the diabetes folks saying, not only is this a unique problem in diabetes, getting your access to your data in healthcare is a problem in other disease states as well. And now what I've come to learn is not only does it affect healthcare, it affects other industries as well. It affects the agriculture industry. Right now, there's a huge issue in the agriculture industry, with farmers not being able to digital tractors and farmers not being able to get their data off of their digital tractor and where it used to be just like the syringe and it used to be a mechanical pump. It used to be a simple mechanical device that anyone could learn about and do it themselves right in front of them, it was obvious how it worked. And that is one of the risks with the adoption of digital technologies. without some support. Without enough documentation, it may not be obvious how it works. So after that D data in the winter, spring started to come around the next year, and I wound up leaving tide pool around April. Now Brandon arbeiter from typo was my roommate at the time. And I remember that about a week after I left tide pool he actually came home with with a bag full of goodies, he came home with a new SIM card, a new cell phone, and he showed me his laptop. And he had all these emails with like source code attached and instructions and websites. And actually, it was kind of a big mess. But I was very excited because this was for the first time all of the pieces in one place. This was the legendary nightscout rig finally in my hands, so I knew exactly what to do. I helped him set up nightscout. I didn't have a working CGM at the time and setting him up with nightscout was actually what convinced me to start using a CGM again, because when I quit, I decided I'm never going to use a CGM. Again, it's not worth it for the discomfort and the quality of life until I can control the data until I can get the data off with nightscout. that possibility came true. And so Brandon came home with that rig. And I helped him set it up. And then I helped set up a bunch of other families. And I converted those emails and those attachments, I converted those into a set of webpages for the very first time, and organized all of the source code. Again, on GitHub, which is the social coding site, I organized all of those projects into well framed projects, the way that programmers would work with these things very, very natively. Very idiomatically. And so I put those up on the web on GitHub, and started calling people over to them. And I showed James wedding and Kate Farnsworth, and Christine dealtrack. Some of these folks, I showed them the new web instructions, and actually walked them through for the first time, once people were able to go on the web, and do a Google search and find it and get all of the instructions in one place. That's when the installs really, really really started taking off. That's when the Facebook group went from 100 to 1000s. And the rest is history right? Stacey Simms 28:35 down. And this is probably a good time to just say that. I've spoken to several people from the the we're not waiting community, and one of them is Jason Adams, who tells the whole story of the Facebook group, and you know, that community and how that came to be. So we'll link that up for sure. and a bunch of other information. But I remember that too. And it just seemed like he was unbelievable to some as in like, wow, we can finally see this and can you believe we can do it, you know, ordinary people. And you know, you do need to, you know, get some help, but you can do it, you can do it. And then there were other people in the community saying, I can't believe we haven't been able to do this until now. Like I knew we could do this. Like, it was very funny to see the people who really understood kind of the back end of things, at least from my perspective. And once that ball started rolling, it seems like it was just moving really quickly. It was a very exciting time. Do you remember it as one? Ben West 29:24 Oh, yeah, I mean, tide pool had a one of their global, they pull everyone from across the globe in the area everyone saw about once a year. And so I got to see a bunch of those folks again, and they were all hanging out. And I remember we were on Facebook just watching Facebook blow up. I mean, they're the posts were coming in, he and your grandson was watching this thing. We mocked up little videos of like, here's the next step that we're going to make an automated system with, you know, this is just the beginning and we didn't post it but we were just in awe of the energy that was coming. In behind the post describing nightscout. I mean, here we have what's essentially a webpage. And there's so much momentum behind this project that people were saying things like we're paying it forward, they were saying things like, we are nightscout. And I've never been part of a technology project where people start identifying as the project, I expected the conversation to change, I laid a lot of a lot of stepping stones in place, to enable the conversation to change that we can speak clearly, as people with needs that are unmet, here's what our needs are. But I did not expect people to identify that I am this products that really blew us away. Stacey Simms 30:42 I'm gonna come back to that, because I think diabetes is very personal. And it was one of the few times where people felt like they not only had a stake in it, but they were also being heard. But I do want to ask you, we've done lots of episodes on nightscout and openaps. And please feel free to jump in if there are things that you would like to share. But you mentioned when we were prepping for this interview testifying for I don't even know how to say this testifying for the 1201 federal DMCA exemption hearing. Ben West 31:08 Yeah, that's right, is that? Well, like I said, one of the things I started to learn, when I started talking to people, what I would code switch into the data governance language, I started to find that there's other people working on this. There's academics, there's people in other industries, and there's legal scholars. And it turns out, FDA has a role in a lot of what we do in diabetes. But it turns out, there's other regulators that deal with other parts of life, the Library of Congress regulates certain things. And one of the things that they do is they manage these 1201 hearings, our carve outs are ways for the public to say, here's this regulation that exists. But I want to testify to get relief from the regulation that does exist, and the regulation in question, this concept of DMCA, the Digital Millennium Copyright Act, and in part of that regulation, has to do with the technical protections, the technical protective measures that manufacturers place inside of their devices, and the consequences for attempting to manipulate that device, potentially to overcome such a protection. Now, the issue here is that this is a technical means that some firms use to make it difficult to get the data on a very practical level, the one of the things that they can do is they can say, well, we're putting a technical measure in place so that only authorized users can get access to the data. who's an authorized user? Well, the manufacturers, of course, is the patient an authorized user? Well, maybe maybe not. Right? That's kind of the debate that's still playing out to this day. One of the exemptions that I went to testify for was that for medical devices, if what you're seeking to do is to get a copy of your own data, there should be no penalty for doing that. And that exemption was granted. Pardon my ignorance, Stacey Simms 33:03 is that exemption granted for you? Or was that something that was more blanket for Ben West 33:07 the Americans, all US citizens, Stacey Simms 33:09 you think that would be front page news? That's amazing. Very, very cool. A lot more ahead with them. But first Diabetes Connections is brought to you by Dexcom. If you are a veteran, the Dexcom gs six continuous glucose monitoring system is now available at Veterans Affairs, pharmacies in the United States, qualified veterans with type one and type two diabetes may be covered. picking your Dexcom supplies up at the VA pharmacy may save you a lot of time to connect with your doctor for more information. Dexcom even has a discussion guide you can bring with you to your doctor, get the guide, find out more about your eligibility go to dexcom.com slash veterans. Now back to my conversation with Ben West. What is nightscout? Right now? No, the commercial offerings have changed a lot. He was title submitting loop to FDA. What is nightscout as a service offering right now or is that even the right word offering? Ben West 34:20 So do you want to know about nightscout as a service, or just nightscout? What is nightscout as a whole? Stacey Simms 34:25 What is it right now? What is it? Like? How do you define it right now? Because it's not the rig? Is it still right? It's not like you're plugging into this into that. I mean, what how it's kind of changed in the last few years. So I guess I'm not sure what I'm asking. I pardon my ignorance there. But Ben West 34:39 when you bring up the rig, you say what is your asking what is nightscout? right now and you mentioned, you know, for example, it used to be the rig. Stacey Simms 34:46 That's what I think it was nightscout is I think of people printing a case for this for that and then and then you got to be careful because the wire might break at some point. Ben West 34:55 Sure. So I think of nightscout as kind of two things. There's the philosophic Typical version of nightscout. And then there's like a piece of software that also exists, right? So and what I mean by that is there's the nightscout ecosystem, right. And this includes the people that are using nightscout. It includes the coaches, the school nurses, the teachers, the clinicians, the parents, the guardians, the caretakers, and the patient's themselves, right. And so there's this thing, that is the network of nightscout. And then there's a piece of software. And in fact, there's a whole bunch of pieces of software and devices, right. So there's the cgms, whether it comes from Abbott, or from Lee Ray are from Medtronic, right? There are the insulin pumps, whether they come from Medtronic or maybe Tandem or maybe Insulet, in the United States. And then there's other kinds of devices, too. There's like cloud devices, right? So some of your Dexcom data goes to Dexcom Cloud, some of your Medtronic data goes to carelink, Medtronic cloud. And so nightscout, there's a lot of ways for data to exist in the world of devices, connected devices that data can come from. And then there's this central hub in the cloud. And that's the piece that usually I think of as nightscout. When people say, Oh, I'm going to go file a bug report on nightscout, or developer says, I'm going to go fix a bug on nightscout. Really, they're talking about this cloud native piece of software that draws the graphs that provides you with a web page, the API that all of the other devices then connect to, right. So that forms when all when you have multiple devices that are talking to nightscout, all of a sudden, you have this nightscout network. And the thing that we think of as nightscout is what I like to think of is that cloud piece of software right in the center of it all. Stacey Simms 36:44 So this might sound silly for someone who hasn't used it, or doesn't really understand what is nightscout. in that setting, as you mentioned, what is it used for? How does it help somebody with diabetes, Ben West 36:58 one thing a lot of people talk about is data governance, being able to control your data. And that's certainly true, I have found that the most profound thing I have found is that it's really this, this concept of sharing, when you invoke the buddy system in your life, you know, as you travel through life, is it during the transitionary events, when you start a new therapy, when you have a special day, and you want some help, and that these are the kinds of things that people are sharing, it used to be when we first started nightscout, almost 10 years ago, seven, seven years ago, it was all about let's at least share what we know about the past. You know, let's share the alerts and alarms. Those are retrospective, right, you have to have past data to generate an alerting alarm. And that's kind of like current and past data. And people would use that the classic use case there that that made the news was when parents go to the office, and the children are going through the school day, and maybe going through mixed authorities and different just different realms of concerns across as they travel through life. What we have found since then, is that it's not just the retrospective data in terms of keeping current that people want to share. It's actually every aspect of diabetes. Surely, if you had the technology and the power, to share your alerts and alarms with me, surely you can share the tools to help me prevent those alerts and alarms. That's where the future is going is we're gonna see services that allow sharing, not just alerts and alarms, but managing every aspect of diabetes as we transition through every phase in our lives. So this is a really exciting time to be in because nightscout is years ahead of some of the big vendors here, providing feature sets for all of those things. Stacey Simms 38:47 It seems like that's a good segue into medical data networks. Can you talk about what that is and what the goal is? Sure. Ben West 38:54 So I've always been interested in this concept of the power of networks. That's one of the things that really got us interested as we started building out the nightscout ecosystem, making sure that we could talk to connected insulin pumps, making sure that we could talk to connected CGM, and talking to people about the data governance and the technology required to do that. In the past, I worked for a company called muraki. They made software defined networking. And that means if you've ever used Wi Fi in a public space, like Pete's coffee, or an airport or something like that, my software has protect your privacy, govern your use of the network govern the speeds at which you can use the network even govern which sites you can visit. And this is very complex techie stuff, but we made a simple dashboard that allowed people to share the process of managing that experience. This is old hat for us. So we created this company medical data networks. What we want to do is wrap up and respect all these years of innovation that have happened in the DIY space and we want to make Set the norm. We don't think that any of this is controversial at this point, the idea that you'd have remote monitoring, the idea that open source would be a fertile ground for the innovative wetlands, right? Some people like to call it. And so that's part of what we're doing. And so now we're offering nightscout as a service. And we make nightscout. press button easy. And we're working with the FDA to make sure that we can operate it fully compliant. Stacey Simms 40:28 That sounds to me like you're trying to offer kind of a DIY the nightscout for people like me who, when many others who were you know, reluctant to do DIY stuff? Is that what the service is? It's a Is it a paid service that I can kind of this is an awkward way to say, like commercialize or make simpler what nightscout has been? Ben West 40:48 That's right. So we want to offer Nightscout as a service and reduce the barrier to entry, make the entire experience much more reliable, predictable and consistent. And we want to increase the benefits of remote monitoring for everyone, whether that's caretakers and parents or temporary guardians, or whether it's just people that just want to find their diet buddy on social media and share it with them. Stacey Simms 41:10 Thank you. So tell me a little bit about what T1Pal Ben West 41:13 is? Sure, I'd love to. So T1Pal is our first product from medical data networks. And it leverages all the experience that we had building nightscout. So T one path is Nightscout as a service. So you can think of it as the easy way, it's a new way to get started with nightscout. And it eliminates all of the server and database administration and DIY craft. So it makes it as easy as any other platform where you simply sign up, you pay for your subscription, and you have access to all of the benefits that Nightscout brings. Stacey Simms 41:46 Is it on the app store? Is it something that people buy? How do they get Ben West 41:50 Dutch the website to one call.com, you Stacey Simms 41:52 can go on your browser. Either commercial products have kind of caught up I mean, I can remote monitor my son with a Dexcom. And you know, t slim or Tandem has an app that is on my son's phone. And I guess eventually I'll be able to see that Omni pod is sharing more, what makes this one better? Ben West 42:11 Well, there's a lot of things. One is the if we go to the connectivity piece, right, this idea of interoperability, and the idea of bring your own device, when we talk about sharing, there's a the base level that I start with is bring your own device I want to share with myself, I want to share I have this Samsung or Apple or whoever created a brand new thing, you know, last week, it's a shiny new thing, I want to go get that and bring that into my therapy, that's going to be part of my system. Now, that's really tough for a lot of these vendors I've been just I've been it's ago, I was looking at a brand new error that someone posted that I've never seen before on, you know, a Dexcom app. And it says it's incompatible in some brand new way. So this idea is really tough for the classic manufacturers who developed these really austere quality systems, right, and those quality systems control for change in the system. And the idea is you want to control your own destiny, and eliminate any possibility of variation. And so in a lot of these systems, what that means is we're going to test on exactly these versions. And anything that we add to that means increased workload that we have to go test. And so we create these haves and have nots. In a world that moves as fast as the one that we're living in where bring your own device, bring your own connectivity, this is the norm. Now, I think the industry, we just need more help, we need more players that are experts in this kind of connectivity in this kind of interoperability to make to satisfy the customer's demands. That's really the area that we specialize in is this idea of Bring Your Own Device connectivity. So that's one and then the other is this idea of sharing a lot of these systems, they're built for that initial use case that we discussed, where it's really oriented around the concept of the nuclear family. And you we know you have exactly these many family members and exactly these roles, and that's the way it's gonna work. Or if you want something else that starts to not work very well. You know, if you want the school nurse to have access during school hours, that doesn't really work very well. The idea of sharing, does it really require installing patient? Or is there a web app that works on any device? Those kinds of things, I think Nightscout still has a really compelling advantage. In addition to all the features, she talked about all the watches, there's more than 20 watch faces just for Garmin for Nightscout. Stacey Simms 44:44 Right and that's just the one brand Garmin there's the all the other ones the Apple Watches smart, the Google wears, etc. fitbits when you see their watch faces, you still need your phone, right? Has anybody gone direct from Dexcom transmitter to phone yet is that maybe some You're working on? Ben West 45:01 Oh, no, I, I can't say much about that. Stacey Simms 45:03 Can you confirm it's really hard because that's what I hear from my friends in the DIY space that I've been bugging for five years about this. Ben West 45:10 What I will say is that this idea of interoperability and connectivity, the idea that you're actually operating a network networks and decentralized systems operate on fundamentally different rules than closed systems that are composed of one unit. And device manufacturers specialize in kind of making these one units or boxes of units at a time. And they fill the shelves with those units, this mode where you start operating in a network with multiple devices that are connected, and you have decentralized emergent behaviors, this is a difficult area. So a lots of technologists that I've worked with agree that nothing's impossible, it's all software, we can make it do anything. But it does require willing participants that are collaborating. Stacey Simms 45:54 One thing that I have found of talking to you over this time is you're very generous towards the commercial systems, you know, there is no, and I think this is very genuine, there's no bashing, you're not trying to put anybody down, it seems to me and you can correct me if I'm wrong here, this is how I feel. So maybe I'm projecting that there is a really important place for these commercial systems with their very, you know, big, you know, simplicity, they have to be able to be used by a vast majority of people with diabetes, they have to be understood by clinicians. But there is this also really, really important DIY focus that we've seen over the last almost 10 years now. And I do think that I wish there was more cooperation, but they are almost complimentary. And when they're both needed, am I off the mark there? Or am I kind of reading between the lines that you may feel a similar way? Ben West 46:42 I agree completely. Stacy, what we have is a market full of people with this inhumane disease, right. And this inhumane disease demands all kinds of things on our time and our resources. And because it's inhumane, there's a lot of needs. Now, these companies solve problems in consistent and reliable ways for people. And that's what we need, we need to all as a market, we need a functional market that's working efficiently. That's providing high fidelity health care that provides a reasonable return on investment in terms of the fidelity of care, the more resources that we spend health care and wellness, we should be seeking a return that yields the kind of fidelity commensurate with the spend, right. So in diabetes for a long time it was you could go try and try and try. And you could try as harder and harder and harder as you'd like, a day to day may not be the same, you may not get the same results. And so trying harder is perceived as not worthwhile. Because there's no feedback loop that provides the yield that's required. I think that what we have is a world that's changing with technology really, really fast. And we have an ethical imperative to use that technology in humane and equitable ways. I open sourced all of this software when we got started, because for me, that was part of this, the scientific methodology of it all is someone else should be able to take this software and debug it audited, etc. That was a really important working principle. For me. That's exactly what we need is we need a working process and all of these domains, we need innovation happening. And we need a pipeline that can deliver the benefits of those innovations in an efficient way to the most number of people possible, as quickly as possible. And why? because as we know, this condition, this intensive insulin therapy is just an inhumane condition, it demands too much. And so I'm imagining a world where we can work together, we can have a bolus free up lane free therapy, we can have Bring Your Own Device connectivity, and have full remote control, we can have the supercomputers and the the networks and the people that are connected to our devices and our data work in a collaborative way to prevent repeated hype hyperglycemia repeated insulin reactions, and we can use that data equitably and humanely to deliver high fidelity healthcare. And Stacey Simms 49:08 that's the vision. You've talked about diabetes 2.0. Is that what you're referring to? Ben West 49:14 Well, that's an idea. I've been workshopping. I'm hesitant to use the numbers for all kinds of reasons. I have talked to people, not just children and parents, I have now talked to people that have had type 1 diabetes for 40, for 50 years. And they are telling me that this network effect that we have created is one of the most powerful things that's that's happened in their lives. I don't know how to respond other than to try to do more. We've got feedback now from parents and children from people in their middle age and from people that are now experienced 4050 years with diabetes, telling us that this has had such an impact that everyone This should be the standard of care for everyone. And I think When we look at what we're doing today, we're still in the early days, we still haven't really optimized for the next gen system where people are really living their lives really free of the blame and stigma. You don't have the blame for getting a bolus wrong, or for carb counting wrong. Because either because you can share it with someone, you can share this complex dosing decision as it transpires right, you can share it with your buddy, you can share it with an expert you choose, you can share it with someone you trust on demand, or someone could do it for you. That's what we're seeing it for a lot of these parents in school, now it's run day, or it's Testing Day, and the parent can manage all of that stress remotely. That's where we're going even with automated systems. That's what we're seeing. Because the demands as you travel through life, the demands change, and sometimes it's fine to coast and let the machine handle it. Sometimes it's necessary to find, invoke the buddy system and find a friend. Yeah, you know, you've Stacey Simms 50:57 mentioned a couple times now bolus free blame free. Can I ask you just to kind of dig in on that a little bit more, because I love that concept of if you aren't deciding to give yourself insulin for a meal or for a high, if you can't mess it up? How can you feel bad about it? And I think when you're an adult with type one, or if you're a parent making decisions for your children about this, this guilt, this mental health part of it is so overlooked. Ben West 51:22 You're so right, Stacy, I call this the onus to bolus Yeah, the onus to bolus so what we've done is we've made out of necessity, we have a system of intensive insulin therapy that requires multiple daily injections. That's been the standard since the introduction of insulin. And then more recently, continuous subcutaneous insulin injection, right? See a society that's classic pump therapy for a brief while we saw the introduction of what's called sensor augmented therapy, sensor augmented pumps, which is where you pair the glucose readings with the insulin pump. And then more recently, we have the introduction of these automated insulin dosing systems, hybrid, full, etc. What all of these systems do is they help address the symptom of diabetes, which is high, uncontrolled glucose. And insulin is the mechanism that we have to bring that glucose back down and under control. It's amazing that this works at all, I sometimes just marvel at how incredible it is that we can manually take this missing hormone insulin, and just dump it in the body almost anywhere, it seems. And it works in the sense that it does provide this temporary relief of controlling that glucose, as we know that balance is extraordinarily difficult, because it is our responsibility to get that right. What happens is, if you get it wrong, it's kind of your fault, especially if you've been given a calculator where your job is you just have to put in the right number. And you know, the calculator will spit out the right number for you. And now it's your job to carb count, or count the number of fat and then deduct the fat and link out the number of fiber and the deductor fiber. And then by the way, for the delay, you know, due to other effects due to the fat, or any alcohol on board, anything like that, or because of sickness or you know what, maybe not feeling well. And actually, you lose your carbs, right? after you eat and you lose the carbs, it just becomes so tricky. One to even know when it is you're going to eat to know how much it is you're going to eat. Three know how that's going to digest. And we could go on and on and on all day about the trouble with this thing. But the problem is, when the language comes up for how we talk about this, we talk about Did you get it correct? You know, we use the words like correction factor, we use the words like correction bolus. I've heard parents actually talk to their children and say go correct yourself. And I've never had that experience, because I was diagnosed in my 20s. But the experience I have had, and this was in my 30s, I was doing exercise in a class and I had an insulin reaction. And you know, I had to take a break out of the class, I really wasn't feeling well, right. And it's really, it's never pleasant when that happens for so many reasons. But one of the biggest is always you're just you're othered you're not part of the group doing the activity anymore. You're often in this weird thing. And often it's involving bloodletting in front of everyone, right? I mean, this is not good. And then so I'm having this conversation afterwards about, you know, here's my CGM. Here's my pump. And, you know, this instructor goes well, Oh, isn't that great? That is doing all that for you. Great. So the reasonable person when they see all of these devices, they're expecting it to do all of this already. Right? That's that's the reasonable person's expectation. I had to have a 15 to 20 minute conversation explaining, well, no, it doesn't really work like that. I have to take the CGM number, I have to guess if it's right. I have to get some blood to make sure. And then I have to do this thing. And then you know, I have to take the right I'm out. And the response right away, this still affects me was. So does that mean you just did up? When I explained how the mechanics works, the onus is on me the onus to pull this is on me to get it right. And the entire system around this is designed to make sure that it's not anyone else's fault. As it should be, it should not be anyone else's fault. If it's going to be someone's fault, it should be mine. But the entire system is designed to dock the way that you interact with the doctors, the therapy that they start you on is designed so that they're not going to kill you. They don't want to kill you. Yeah. And it's designed to just keep you alive, and they'll try to figure things out. You know, after that, let's keep you alive. First, the way that design happens in manufacturing with these vendors, I call it defensible design. It is designed so that they will not be held responsible for something going wrong. That's the way that it's designed. Stacey Simms 55:53 It's interesting, because so many thoughts flashed through my head when you were talking about those things in terms of blame a lot of parents and I speak on this to try to get them to stop, but a lot of parents call the a one c visit to the endocrinologist their report card, you know, it's mom's report card. And that's a really tough way to look at this. But I understand why. And another thought I had was when we started with control IQ, about a year and a half ago now, I was just gobsmacked on how many decisions it makes it can make something like 300 decisions a day and how we were and I say we because you know, I mean, Ben, he was diagnosed at two. So I'm still going through the process of saying his diabetes, not our diabetes, so forgive me. But you know, he's a once he went down, his time and range went up. But it really showed me how there was no way for me as a parent of a toddler and a little kid and a middle schooler. And there was no way for him as an individual to keep up with that machine. And that machine couldn't even be perfect. And I got to tell you, well, it was frustrating to say okay, the machine can be perfect. It was so freeing to be able to say I had no chance, if that makes sense. Ben West 56:58 That's why I chose the word inhumane stage, is when you see what it takes for success, you realize you didn't stand a chance. And we have to find ways other than blaming each other. We have to use technology and in this in this way to make this possible. Stacey Simms 57:15 Thinking that way, then, let's talk a little pie in the sky here. Obviously, Dream stuff with technology isn't gonna happen next year, or maybe even the next five years. I don't know what the timeline is. But what do you want to see? I mean, can you give me some, and I'm going to put you on the spot, but maybe some concrete examples of how that bonus to bolus could be lifted? Ben West 57:35 Well, there's, there's a number of ways to address this. You mentioned other technologies, other therapies, there's certainly so many capabilities, we're adding to our tool belt, whether that's new therapeutics, I've heard of people taking other hormones, other injections, supplementary injections, that that seems to really work. Well. For some folks, we've got faster insolence coming relatively soon, some folks are working on, you know, micro dosing, glucagon. And then there's there's other types of therapeutics as well. So there's all kinds of things it's really difficult to know, a lot of that is out of my wheelhouse. I'm a software person, I know how to manage cloud, we know how to do transformational services, digital transformation, right, we know how to manage really complex stuff, using technology to provide a collaborative decision making process, it's in the power of the web, or society as a whole. That's why I wanted to become a technologist and work on the web as a whole was this idea of the collaborative power of sharing. That's my big bet. That's the thing that I get really excited about, I see automated dosing systems are coming faster insulins are coming. And those are all great, they're going to be so profound and helping people. But at the end of the day, with these therapies, you're still facing exactly that you're facing a lifelong journey with other people with this experience. And my big bet is that this need for sharing is so fundamental that that's why sharing is being adopted in every part of software that we look at every piece of technology that we get first. It's like a solo experience. And then eventually, it becomes like a collaborative social experience. that's been true of a lot of different kinds of software. And I think that we're going to see the same thing in diabetes care that we'll see clinics that will embrace the digital technology, so that instead of having appointments once every 90 days, or once every six months or once a year, whatever it is that you're going to get connected to the people you trust in the experts you need just in time and on demand. So if you're someone if you're using one of these fancy pumps that's connected to supercomputer and connected to a network, there should be an agreement for how this is going to work. If you're going low. lifetimes per night. What is the pathway for someone to intervene for us to deliver the help that you need? Because I'm pretty sure no one wants to go for an insulin reaction for a sixth and seventh night. Yeah, I'm pretty sure there's some consent that can be arranged. There's got to be some design there. Right, where we're going to eliminate this. When I think about the remote overrides, and the overrides features that are happening right now we're, you know, we're playing around with things like sleep mode, things like exercise mode, those are dosing decisions. When you decide to invoke sleep mode, or invoke exercise mode, the algorithm is changing its dosing slightly, it turns out that all dosing decisions are just really, really hard. You can't turn on dosing. On exercise mode, when you start exercising, you have to turn it on hours ahead of time, right? Like those kinds of things. Maybe we could share access to those things. One of the examples that I've been learning about recently is, is this remote overrides where the teenager is doing testing, and it's stressful on test day, and your attention is supposed to be on taking the test. It's not supposed to be on managing diabetes, and in fact, playing around with diabetes devices, which is how it's gonna look like to the proctor to the school that you're just playing around with devices, that becomes an issue. Can you trust the proctor to handle these devices, etc? Well, guess what, with remote overrides this idea of remote controls and sharing your dosing decisions, that becomes a non issue. I've heard of parents and teenagers coming up with a plan for the day, okay, it's testing, here's what's going to happen. Here's the schedule we're going to go thro
Eric is half way to becoming Spiderman. Jon rebuilds a carburetor. Twitter and Zoom followup. Disinformation and Phishing. Insulin Pump Hacks and stuff neither Eric nor Jon understands. (Yet!) Eric makes YARPSF (yet aother raspberry pi something fun) and Jon gets into the physics of time machines, pickles and sadness. 0:00 - Intro 12:56 - Twitter 16:11 - Zoom 20:33 - Disinformation 24:32 - Phishing 28:26 - Insulin Pump 37:04 - OpenAPS 37:17 - Page Protection Layer 43:34 - Watched Pot 46:06 - Pickles and Sadness
แผนการของ Liam Zebedee วิศวกรซอฟต์แวร์ชาวดัตช์ ก็คือกระบวนการในการบันทึกระดับน้ำตาลในเลือดโดยอัตโนมัติกำหนดอินซูลินที่ต้องการและส่งผ่านปั๊มอินซูลินซึ่งให้อินซูลินที่ออกฤทธิ์สั้นอย่างต่อเนื่องตลอดทั้งวัน เพื่อทำตามแผนของเขา Zebedee ใช้ CGS FreeStyle Libre สำหรับการตรวจสอบกลูโคสอย่างต่อเนื่อง และใช้เครื่องส่งสัญญาณ Miaomiao เพื่อส่งการอ่านไปยังโทรศัพท์ของเขาผ่านซอฟต์แวร์โอเพนซอร์ซ Nightscout และการสร้างภาพกราฟฟิกผ่าน Intel Edison และ Explorer HAT เมื่อทุกสิ่งรวมกัน การคุมเบาหวานนี้ดำเนินการโดยใช้ ‘OpenAPS’ ซึ่งจะดาวน์โหลด / อัพโหลดข้อมูลใน Nightscout และทำนายการส่งอินซูลินในปั๊มผ่านทางวิทยุนั่นเอง ช่องทางติดตาม ด.ดล Blog เพิ่มเติมได้ที่Fanpage : facebook.com/tharadhol.blogTwitter : twitter.com/tharadholInstragram : instragram.com/tharadholWebsite : www.tharadhol.com
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.
Resources from the episode:Beta Bionics: https://www.betabionics.com/OpenAPS.org: https://openaps.org/Looped Facebook Group: https://www.facebook.com/groups/TheLoopedGroup/LoopDocs: https://loopkit.github.io/loopdocs/DiaTribe: https://diatribe.org/Clinicaltrials.gov: https://clinicaltrials.gov/
Zuckerjunkies - Ein Leben mit Diabetes Typ 1 vom Diabetiker für Diabetiker mit Sascha Schworm
Show Notes Lieblings Internet-Ressource 1) AndroidAPS 2) ReadtheDocs (AAPS und OpenAPS) 3) Seemycgm Blog von Katie De Simone 4) Die Logik meines Diabetes (Dr. Teupe) 5) Nightscout Erwähnte Podcasts / Blogs 065 – Martin Schiftan – der Looper von Zehn.be – Diabetes mit Closed Loop automatisieren Der Basalratentest für das Basalinsulin Buchempfehlung Der Schwarze Schwan: Die Macht höchst unwahrscheinlicher Ereignisse von Nassim Nicholas Taleb Freakonomics: Überraschende Antworten auf alltägliche Lebensfragen von Stephen Dubner und Steven Levitt CGM- und Insulinpumpenfibel: oder: Bei Dir piept’s ja! Kontaktdaten Facebook: Christian Taskin ** Danke für´s Zuhören ** Wenn Dir diese Podcastfolge gefallen hat, freue ich mich über Kommentare und am liebsten über eine Bewertung und Rezension auf iTunes. Alle Podcast-Folgen findest Du auch unter dem Podcast-Namen: Zuckerjunkies auf iTunes (iPhone), DEEZER, Player FM (Android), Stitcher, uvm. Besuche mich auch auf Instagram: @Zuckerjunkies und Facebook: Zuckerjunkies // FPE Rechner als APP für Android verfügbar // *** Über den Podcast *** Vom Diabetiker für Diabetiker. Leben mit Diabetes mellitus, Typ 1 Diabetiker oder Typ 2 Diabetiker? Karamellisiere ich in der Sonne? Wie geht ein Leben mit der Zuckerkrankheit weiter? Wie können Eltern ihren Kindern helfen, wenn sie nicht wirklich wissen wie? Wie binde mein neues "Anhängsel" in meinen Alltag ein? Fragen über Fragen, die bei vielen Unsicherheit auslösen und zum Teil ein Leben lang begleiten. Dieser Podcast soll Diabetikern helfen, den Alltag zu meisten und mehr Selbstsicherheit geben. Mehr Infos auch auf meinem Blog https://www.zuckerjunkies.com
Diabetes is a disease that requires management 24 hours a day, seven days a week. People living with diabetes must calculate complex mental math when deciding how much insulin to dose, while also taking into consideration the effects of their exercise, food intake, and even stress levels. Digital technology is changing healthcare, which brings with it the hope of new solutions such as wearables, apps, and mobile devices. On this episode, Joe talks to patient advocate and founder of #openAPS, Dana Lewis. Hear what factors motivated her to seek out digital tools to manager her T1 diabetes and ultimately create an automated DIY closed loop system. Joe also talks to Marie Schiller who is leading the R&D efforts in global product development for Lilly’s Connected Care and Insulins about the key to finding new and better solutions for diabetes care.
Improving outcomes by opening closed loops APS technology to anyone with medically compatible devices
What if an algorithm could be your doctor? Living with Type 1 diabetes usually means making a lot of medical decisions on your own, sometimes daily. In this episode of ‘Fixed That For You’, you’ll hear about a problem millions of sick people face daily. It’s the story of Dana Lewis, a young woman who got tired of managing her disease, and decided to replace biology with data by creating an artificial pancreas. The results? Life changing. 'Fixed That For You' is an original podcast from Segment. For more on the series go to fixedthatforyou.com. In this episode, Dana talks about the Open Artificial Pancreas System project — here’s where you can read more about #OpenAPS. Want to learn more about what continuous glucose monitoring is or how it works? Take a look at the CGM made by Dexcom. Additionally, please visit the American Diabetes Association to learn more about how to manage diabetes. Build something of your own with a Raspberry Pi. Lastly, check out Nightscout, the visualization app Dana mentioned in this episode.
Today's Guest: Dana Lewis | Creator of the “Do-It-Yourself Pancreas System” (#DIYPS), founder of the open source artificial pancreas system movement (#OpenAPS), and a passionate advocate of patient-centered, -driven, and -designed research. Greg and Dana talk about data driven diseases and how patients can play a leading role in developing new mechanisms for living with them. important Links: DIYPS Website: https://diyps.org/Dana's LinkedIn: https://www.linkedin.com/in/danalewis/Dana's Twitter: https://twitter.com/danamlewis Follow Dana on Twitter at www.twitter.com/danamlewis. For more info about Greg Matthews, visit: http://linkedin.com/in/gdmatthews For more, visit the DataPoint show page at http://touchpoint.health/shows/datapoint/.
Zuckerjunkies - Ein Leben mit Diabetes Typ 1 vom Diabetiker für Diabetiker mit Sascha Schworm
Warnung!! Beim Closed Loop handelt es sich um ein "Do It Yourself" (DIY) Thema. Daher distanzieren wir uns als Wegweiser oder Tippgeber zu dienen. Du bist selber dafür verantwortlich, wenn Du an Deiner Pumpe schraubst. Du bist selber für Fehler verantwortlich! Wenn Du unsicher bist, lass es lieber oder lese mehr über dieses Thema und frage Profis (s.u.). ShowNotes Kontakt zu Martin Facebook: www.zehn.be Twitter: Zehn_be Events T1Day Berlin Dokus: OpenAps und AndroidAPS bauen auf dem oref-Algorithmus von OpenAPS auf: AndroidAPS: https://androidaps.readthedocs.io/en/latest/DE/ OpenAPS: https://openaps.readthedocs.io/en/latest/ Loop (Iphone loop): https://loopkit.github.io/loopdocs/ OpenAPS und Iphone Loop gehen aktuell nur mit alten Medtronic Pumpen. AndroidAPS mit der Dana R, Dana RS und der Combo. Martins Artikel-Serie zum Loopen Closed Loop - Der Artikel Nr. 3: Wie ermittle ich die benötigten Faktoren Gute Anlaufstellen sind auch: https://wiki.notwait.in/ https://sugartweaks.de/diy-closed-loop-welches-system/ Facebook-Gruppen: Deutschsprachige Loop Gruppe: https://www.facebook.com/groups/loopedDE/ Englischsprachige Loop Gruppe: https://www.facebook.com/groups/TheLoopedGroup/ Englischsprachige AndroidAPS Gruppe: https://www.facebook.com/groups/AndroidAPSUsers/ Deutschsprachige Nightscout Gruppe: https://www.facebook.com/groups/nightscoutDE/ Deutschsprachige Libre/Technik Gruppe: https://www.facebook.com/groups/FreestyleLibreFreaks/ Gitter-Chats: Beginner-Channel für Anfänger Fragen https://gitter.im/germanLOOPSTARTERS/germanloopstart/ Allgemein zu Loop-Sachen in Deutsch https://gitter.im/LadyViktoria/germanLOOP/ Loop-Smalltalk (was nicht unbedingt zum Thema loopen gehört) https://gitter.im/AdrianLxM/gerLoopSMALLTALK/ Looper-Treffen: http://loopertreffen.androidaps.de Achtung! Neue Liste/n der potentiellen Orte für Loopertreffen!!! Diese sind als Anregung für euch gedacht, Treffen zu organisieren. Bitte neu eintragen! Ihr findet sie hier: https://xoyondo.com/u/SUPERLooperOrte TV-Beiträge: https://www.rbb-online.de/rbbpraxis/archiv/20181114_2015/diabetes-typ-1-closed-loop-systeme.html https://www.rbb-online.de/rbbpraxis/archiv/20181114_2015.html https://www.ndr.de/ratgeber/gesundheit/Diabetes-Blutzucker-automatisch-einstellen,diabetes388.html da gibt es die Videos nicht mehr online in der Mediathek. *** Über den Podcast *** Vom Diabetiker für Diabetiker. Leben mit Diabetes mellitus, Typ 1 Diabetiker oder Typ 2 Diabetiker? Karamellisiere ich in der Sonne? Wie geht ein Leben mit der Zuckerkrankheit weiter? Wie können Eltern ihren Kindern helfen, wenn sie nicht wirklich wissen wie? Wie binde mein neues "Anhängsel" in meinen Alltag ein? Fragen über Fragen, die bei vielen Unsicherheit auslösen und zum Teil ein Leben lang begleiten. Dieser Podcast soll Diabetikern helfen, den Alltag zu meisten und mehr Selbstsicherheit geben. Mehr Infos auch auf meinem Blog https://www.zuckerjunkies.com
Loop - the DIY app that helps with automated insulin delivery - may become the first do it yourself diabetes solution to go to the FDA. But why did Tidepool decide to take on this challenge? Stacey talks to Tidepool CEO Howard Look about what this decision means, how it’s going to work and what it means for those interested in DIY but not willing to use out of warranty pumps or do a lot of programming ourselves. And of course we’ll explain what Loop actually is. Read the Medium article Howard mentions here A French company announces they’re a step closer to approval of their closed loop – we’ll talk about Diabeloop And Pandora gets into the podcasting space. Diabetes Connections is one of the few shows selected for the first launch! Listen to past episodes where we talk to DIY, OpenAPS and We Are Not Waiting advocates and experts. Join the Diabetes Connections Facebook Group! ----- 1:30 Stacey welcome & explains Loop 6:50 Interview with Howard Look 30:30 Diabeloop explained 35:00 Pandora and podcasts Become part of the Pandora's Beta testing as a listener 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
The Fox TV show "The Resident" takes on type 1 diabetes and gets it right! This week's episode "The Prince and the Pauper" features two plot lines about diabetes. Stacey speaks with the co-executive producer Andrew Chapman on why this issue and why now. Chapman lives with LADA (Latent Autoimmune Diabetes in Adults) also known as type 1.5. He tells Stacey there are two other people with diabetes on the writing staff. Drew Chapman's author page See Chapman's play 99 Tropes in Seattle later this year! Learn more about LADA in previous episodes: The DIYPS (LADA featured in the Community Connections) Also features information about the start of OpenAPS Disney Channels' Jennifer Stone Shares Her Story Game show episode: Wait Wait Don't Poke Me! (From July) When TV & Movies get diabetes wrong (Beyond Type 1 article) Also this week, what researchers are learning about OpenAPS – the do it yourself closed loop – from Twitter conversations! Read the study write up here. Join the Facebook Group! ----- 1:25 Stacey Welcome 5:00 Interview with Andrew Chapman 35:00 Movie & TV T1D Mistakes (other shows and movies) 36:30 OpenAPS and Twitter: a new study (and Stacey shares her social media policy) 41:40 Stacey will be in Syracuse middle of October 42:40 Stacey shares field trip stories (Benny is on one this week) ------ 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
Discuss this episode on reddit Support us on Patreon Join us on Discord Cas' drop after cycling home from work All of Cas' nightscout bookmarks Diabetes Etiquette for people who DON'T have diabetes Diacast 005 - Dealing with people Adi and Cas giving a presentation on OpenAPS
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
It's been 20 years since Nicole Johnson took the crown, becoming Miss America. That was just five years after she was diagnosed with type 1. At diagnosis, her doctors told her she was too sick to continue college, to pursue her dreams of being a journalist and to have a baby. Nicole shares how she overcame that prediction to go on to finish school, compete and win pageants and to have a child a few years later. We’ll also talk about some controversy among the Miss American organization today. Other Miss America contestants with type 1 include Sierra Sandison and Caroline Carter (click to listen to our previous interviews with them) Plus, one small step toward a DIY Omnipod Loop. Learn more about OpenOmni. Stacey also shares a recent issue with Benny's insulin pump and what they did for a backup plan. This podcast is not intended as medical advice. Please contact your health care provider with any questions. Join the Diabetes Connections Facebook Group! ----- 1:50 Stacey Welcome 2:45 Stacey talks about the official launch of Jesse Was Here for those who've lost a loved one to diabetes 4:15 Listen to Nicole win the crown in 1998 6:00 Interview with Nicole Johnson 53:15 Stacey talks about OpenOmni (you can also learn more about NightScout here and OpenAPS here) 56:10 Stacey shares their issue when Benny's insulin pump wouldn't charge 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
>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
DPharm Podcast Series #5 Reducing the Burden of Type 1 Diabetes through a Model of Democratized R&D Patient advocate star, Dana Lewis, founder of OpenAPS delivers a powerful session at DPharm on an idea to reduce the burden of type 1 diabetes with a smart system she created through open soucre. Learn how she drive the idea and creation of the "Self driving car for diabetes". The next DPharm conference is September 25-26 in Boston. DPharm reports on innovation and disruptive innovation to advance clinical trials and supports the community behind the movement. Speaker: Dana Lewis, Creator, Do-It-Yourself Pancreas System and Founder, OpenAPS Producer: Valerie Bowling, Executive Director, DPharm
Improving outcomes by opening closed loops APS technology to anyone with medically compatible devices
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!!
Dana Lewis returns to the podcast to discuss the latest from the OpenAPS movement, reflect on the growing mainstream and local coverage of diabetes innovation, share the possibility of open source research through Open Humans, and the latest in gluten free dining successes. Follow Dana on Twitter @danamlewis and and openaps.org. Check out coverage of Dana and OpenAps at al.com. and Fast Company. Run Time - 51:27 Send your feedback to feedback@justtalkingpodcast.com.
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.
This week: OpenAPS, Looping, Happ - a bunch of weird sounding terms that are changing the way many manage diabetes. Tim Street has lived with type 1 for 28 years, he writes a blog called Diabettech. Tim talks about the DIY systems out there right now (he's tried almost all of them) and about all the new choices for people with diabetes available now an in the next few years. Lots of conversation in this show about the “art of the possible." It's also Diabetes Podcast Week! This is the second year of Stacey's campaign to bring together podcasters and video bloggers to benefit Spare a Rose, Save a Child. Diabetes in developing countries can be a death sentence. This Valentine’s day, considering donating the cost of just one rose. That can keep a child with type 1 alive for a month. A dozen roses? That cost can cover a year. Spare a Rose benefits Life for a Child, an International Diabetes Federation Program.
This week, a big step forward for diabetes technology. The FDA recently approved the very first hybrid closed loop insulin system: the Medtronic MiniMed 670G. Medtronic's Chief Patient Officer Louis Dias and Social Media Manager Karrie Hawbaker talk to Stacey about what this product is, what it isn’t, access to it and what comes next. Our Community Connection this week features a unique fundraiser, The Elbow Bump Challenge. Find out how 9-year-old Logan hopes to help out his favorite conference, Children with Diabetes, Friends For Life. And Stacey talks about the Joslin Medalist Study for people living with type 1 for more than 25 years.
When you deal with diabetes you deal with a lot of numbers and a lot of data. This week's guest is Dexcom's Senior Vice President of Data Annika Jimenez. She joined the company in 2015 with a Silicon Valley background and brings us up to date on Dexcom's Clarity software program, developments to come and Dexcom's relationship with Nightscout and OpenAPS developers. In our Community Connection segment, Stacey talks to Sarah Harmon, founder of Poppy Medical ID. As a teenager, Sarah hated wearing a clunky medical bracelet, so she created a new line of ID jewelry. Poppy Medical ID is currently featured on Kickstarter. Stacey also explains that her contest continues. Leave a review and you could win a gift card. Details here - contest ends September 27, 2016
Dana Lewis returns to the podcast to chat about gluten free thin mints, the presenting at the most recent American Diabetes Association's Scientific Sessions, the consistent growth of the OpenAPS community, and what the future holds for closed loop technology. For more information about the OpenAPS data presented at Scientific Sessions, visit OpenAPS.org. You can follow Dana on Twitter at @danamlewis. Run Time - 1:02:18 Send your feedback to feedback@justtalkingpodcast.com.
Scott Leibrand loves Dana Lewis (episode 63) and together they built Dana her very own artificial pancreas. This episode isn't a true part 2, it is more a different perspective on the story of OpenAPS then the one you heard in ep 63. In the end, I got the feeling that if this guy loves you... there is nothing that he wouldn't do. In episode 63 of the JBP I talk with Dana and get her perspective on their journey. Show Notes Check out the all new MyOmniPod.com, like OmniPod on Facebook, follow them on Twitter and download their all new app for iOS or Android. *** OpenAPS means basic overnight closed loop APS technology is more widely available to anyone with compatible medical devices who is willing to build their own system. Find out more at OpenAPS.org The JBP is now available on Google Play! Subscribe to the podcast on iTunes today! My type 1 diabetes parenting blog Arden's Day Listen to the Juicebox Podcast online Read my award winning memoir: Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad Follow Scott on Social Media @ArdensDay @JuiceboxPodcast Disclaimer - Nothing you hear on the Juicebox Podcast or read on Arden's Day is intended as medical advice. You should always consult a physician before making changes to your health plan.
Dana Lewis has type 1 diabetes and one day she decided to try to make the alarms louder on her Dexcom CGM. That simple endeavor led Dana and her husband Scott to build their very own artificial pancreas... then they shared the code that they wrote online. Dana says that anyone who wants to, can do the very same thing. This is a story about ingenuity, community and the desire to live a better life. In episode 64 of the JBP I talk with Scott and get his perspective on their journey. Show Notes Check out the all new MyOmniPod.com, like OmniPod on Facebook, follow them on Twitter and download their all new app for iOS or Android. *** OpenAPS means basic overnight closed loop APS technology is more widely available to anyone with compatible medical devices who is willing to build their own system. Find out more at OpenAPS.org The JBP is now available on Google Play! Subscribe to the podcast on iTunes today! My type 1 diabetes parenting blog Arden's Day Listen to the Juicebox Podcast online Read my award winning memoir: Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad Follow Scott on Social Media @ArdensDay @JuiceboxPodcast Disclaimer - Nothing you hear on the Juicebox Podcast or read on Arden's Day is intended as medical advice. You should always consult a physician before making changes to your health plan.
01:06 - Scott Hanselman Introduction Twitter GitHub Blog Hanselminutes This Developer's Life 02:23 - Managing Diabetes American Diabetes Association 13:14 - “Closed-Loop” System Dexcom Continuous Glucose Monitoring (CGM) 20:16 - OpenAPS 23:00 - Monitoring 26:37 - The Current State of Systems 28:44 - What can people do now? openaps 34:56 - The Future Bigfoot Biomedical 37:37 - Wearing Devices Scott Hanselman: Hacking Diabetes Picks Reading Papers (Andrew) Diabetes Light (Jaim) Diabetes Light: My holistic journey to health (Facebook) (Jaim) The Essential Prince Reading List (Jaim) Jimmy Jam and Terry Lewis have become synonymous with recording excellence (Jaim) The Primal Blueprint (Chuck) Mark’s Daily Apple (Chuck) Chatting with Prince on AOL in 1999 (Scott)
01:06 - Scott Hanselman Introduction Twitter GitHub Blog Hanselminutes This Developer's Life 02:23 - Managing Diabetes American Diabetes Association 13:14 - “Closed-Loop” System Dexcom Continuous Glucose Monitoring (CGM) 20:16 - OpenAPS 23:00 - Monitoring 26:37 - The Current State of Systems 28:44 - What can people do now? openaps 34:56 - The Future Bigfoot Biomedical 37:37 - Wearing Devices Scott Hanselman: Hacking Diabetes Picks Reading Papers (Andrew) Diabetes Light (Jaim) Diabetes Light: My holistic journey to health (Facebook) (Jaim) The Essential Prince Reading List (Jaim) Jimmy Jam and Terry Lewis have become synonymous with recording excellence (Jaim) The Primal Blueprint (Chuck) Mark’s Daily Apple (Chuck) Chatting with Prince on AOL in 1999 (Scott)
“A Roomba ate my pancreas!” It sounds like the plot of a weird sci-fi comedy. But in Dana Lewis’s life, this is just a normal day. Lewis is one of the first people in America to create her own mechanical pancreas in an attempt to better manage her type 1 diabetes. (Her robotic vacuum cleaner keeps slurping up and choking on the system’s many cables.) Some of Lewis's artificial pancreas devices. (Kenny Malone) Type 1 diabetes is, at its simplest, a broken pancreas. Sometimes called juvenile diabetes, the autoimmune disease disables the pancreas from producing insulin, a key component for controlling blood sugar. People with Type 1 diabetes often have to use glucose monitors and insulin pumps to allow their bodies to function. For years, the Holy Grail of diabetes management has been the so-called artificial pancreas, a system that can measure blood glucose levels and automatically give the appropriate insulin dosage. And while a handful of companies are close to getting the technology to market, tech-savvy patients have grown impatient. Dana Lewis and her husband Scott Leibrand devised a system to “hack” the usual methods of diabetes management, which they found tiresome for a normal, active person trying to live their life. Their Open Artificial Pancreas System (OpenAPS) rigged Dana’s glucose monitor and insulin pump to automatically understand shifts in blood sugar and adjust insulin rates accordingly. Dana Lewis and her husband, Scott Leibrand. (Kenny Malone) An early version of the couple’s system caught the attention of the Food and Drug Administration – the government agency that regulates medical devices. The FDA strongly encouraged Scott and Dana to keep their invention to themselves and not distribute do-it-yourself pancreases or the code running them. But last year the couple decided that OpenAPS was working so well for Dana, that they had a moral obligation to share it with the type 1 diabetes community. In February of 2015 they open-sourced the documents for the artificial pancreas and now, nearly 50 people have been built their own versions. In this episode of Only Human, we look at how Dana and Scott hacked together one of the first artificial pancreas systems and the complicated ethical questions that come with sharing the technology. Have you ever hacked your own medical advice? Tell us in the comments below.
Scott sits with fellow Type 1 Diabetic Dana M. Lewis about the Open Artificial Pancreas System that she and her husband Scott Leibrand created. As other commercial entities race to "close the loop" for diabetics, how did two regular folks control diabetes with off-the-shelf parts? Dana demystifies the technology behind this software-managed diabetes solution.
Dana invented #DIYPS, the "do it yourself pancreas system", in Nov. 2013 and in Dec. 2014 her and her now husband "closed the loop" and turned #DIYPS into a fully functioning artificial pancreas. In Feb. 2015 she founded the #OpenAPS movement, an open and transparent effort to make safe and effective basic Artificial Pancreas System technology widely available to more quickly improve and save as many lives as possible and reduce the burden of Type 1 diabetes. Check out her journey as we talk through the navigation from maker, to hacker, to inventor.
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