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Effisode – Your Kids, My Kids – They're All Perfect

Intro music by Scott Holmes
July 27, 2021
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A Series of Conversations with Skip Steward, MBA

Skip Steward earned an MBA and is experienced in diverse industries including automotive, machining, food, process, service, and healthcare. He is a Shingo examiner, a Certified Quality Engineer (CQE), a Quality Management System Auditor, a certified Six Sigma Black Belt, and a certified Lean Champion. Skip is a certified trainer in TWI Job Instructions (JI), Job Relations (JR), and Job Methods (JM). He is an award-winning leader who has implemented streamlined business systems that deliver significant contributions to the bottom line, while increasing employee performance and improving productivity. He is recognized for superior project management and communication skills; he has spoken both nationally and internationally. Skip currently serves as Vice President and Chief Improvement Officer at Baptist Memorial Health Care headquartered in Memphis, TN where he develops, directs, and implements performance improvement activities identifying inefficiencies; implementing strategies to improve quality, service, and finances; and fostering a culture of continuous improvement and excellence. Here in Episode #128 Skip starts our show with a leadership mindset that encourages us to look at life as a series of conversations. Skip gives us a great overview of his career going from manufacturing, to private equity, into his current role as Chief Improvement Officer; and gives us insight into the daily focus that he brings to his teams. He gives us a 30,000-foot overview of the TWI principles and methodology. He shares a dark moment story encouraging us to avoid the seduction of over-analysis. Skip provides a great definition associated with the complexities of healthcare. He shares how he uses humble inquiry to build strong connections with his teams. Skip provides an Aha centered on learning and respecting the different cultures that exist within our organizations. He shares thoughts on future trends and how do we can start to put quality ahead of many of the innovations; and gives us a healthy dose of advice career advice to move us all forward · Connect with Skip on LinkedIn · Baptist Management System – YouTube · 6th Annual Baptist TWI Summit · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating · Earn Your Lean Six Sigma for Healthcare Certification · Request a Corporate Demo of our online QI Academy --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
July 27, 2021
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Episode 092 – Enabling Rare Disease Treatments with Sanath Kumar Ramesh – Founder & CEO of OpenTreatments

ONCE UPON A GENE - EPISODE 092 Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments Sanath Kumar Ramesh’s son is one of only nine kids worldwide with an ultra-rare genetic disease called Sedaghatian Type Spondylometaphyseal Dysplasia (SSMD). He has a podcast called Raising Rare where he and his wife talk about their journey, finding a treatment for their son and they feature stories of others in the rare disease community. Sanath is joining me on this episode to talk about his new software platform called OpenTreatments, a nonprofit organization with a mission to enable treatments for all genetic diseases. EPISODE HIGHLIGHTS Can you tell us about yourself and your family? I have a 2 1/2 year old boy named Raghav who was born with challenges and he continued to miss milestones through his first year of life. On his first birthday, we learned he has an ultra-rare condition caused by a mutation in the gene GPX4. When Raghav was diagnosed with SSMD, we thought he was the only patient, but we've since found 8 other patients worldwide.  Can you tell us about OpenTreatments? My idea is to collaborate the knowledge and experience of biotech companies and academic researchers to help patient foundations build and run their gene therapies. We are starting with a pilot program of four diseases to understand how well the software program is working and identify any challenges the programs are experiencing. Our mission is to enable treatments for all genetic diseases regardless of rarity or geography. How can parents or patient groups work with OpenTreatments? There's a lot of risk in the drug development process and the amount of risk we take on is not like any investment any one of us has ever done in our lives. Even wealthy venture capitalists don't invest in drug developments because there's a high risk of losing money. For parents who have just received a diagnosis, they're struggling to understand what life has in store for them and embarking on drug development isn't well aligned. We focus mainly on patient groups who have a foundation started, have raised money and have a scientific advisory board.  Do you think biotech and pharma companies will eventually take interest in rare disease treatment missions? It's a challenging problem and I think the bottom line is risk. Pharma isn't interested in rare diseases with such a limited number of patients, like my son's disease, because the risk to treat a patient where a potentially adverse reaction can happen is a risky unknown. The decision becomes whether or not the risk is worth the benefit and what the benefit is when treating such a small number of patients. When there is a larger group of patients, there's also a bigger commercial upside and it's likely worth the risk to explore treatments. Several ideas have been proposed for getting ultra-rare diseases an alternate path to drug therapy, including getting more regulatory support or building collective treatment for ultra-rare diseases. Insurance providers could also potentially pay for the research and development of drug therapies because their spend burden is high over the lifetime of a patient. I don't know what the future holds, but I do know that we need more people in drug development so ideas can be tried and tested. RESOURCES MENTIONED Raising Rare Podcast https://www.raisingrare.fm/ OpenTreatments https://www.opentreatments.org/ Cure Raghav https://www.curegpx4.org/ CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
July 22, 2021
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Sacrifices and Small Wins: The Fight Against Rising Gun Violence

As gun violence continues to soar in U.S. cities, one violence prevention specialist tries to stem the tide of homicides in his hometown.Guest: JJames "JT" Timpson, Director for Community Partnerships and Safety, Roca Maryland and Roca Impact InstituteRead a full transcript and dig deeper into the issues explored in today's episode: https://tradeoffs.org/2021/07/22/sacrifices-and-small-wins-the-fight-against-rising-gun-violence/Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
July 22, 2021
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S1.Ep5: Why We Need to Be Active Participants in Personalised Health to Maximise Its Benefits

The biggest investment in your lifetime isn't financial. It's behavioural.  Our current approach to healthcare is unsustainable, partly because people are largely detached from decision-making. We tend to receive prescribed solutions that we don't have a hand in creating.  To deliver the right interventions, to the right people, at the right time, we not only have to understand our unique health needs and options— we have to be willing to become our own force for change.  So what steps will you need to take to maximise the benefits of personalised health in your future? In this episode, host Tony Estrella and guest experts Janice Chia and Kaakpema "KP" Yelpaala explore what individuals and health systems can do to empower people to become participants in their health, rather than simply "patients."  The goal? To have more good health years than bad health years. Show Links: Future Proofing Healthcare Podcast: Website | Twitter | LinkedIn | Facebook | Instagram FPH Personalised Health Index Tony Estrella: Twitter | LinkedIn Guests Links: Ms Janice Chia: LinkedIn Kaakpema "KP" Yelpaala: LinkedIn | Twitter Ageing Asia: Website | LinkedIn | Twitter | Facebook | Instagram InOn Health: Website | LinkedIn | Twitter | Facebook For a full list of the sources used to research this episode, and for additional information about the show, please visit: futureproofinghealthcare.com/podcast
July 21, 2021
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A Vision of Nursing Quality Leadership w/ Denise Josephs DNP, RN, NEA-BC

Dr. Denise Josephs is the Vice President of Nursing at Seattle Cancer Care Alliance in Seattle, Washington. Denise has been a nurse for nearly 25 years and has obtained her Masters in Nursing Administration and Informatics from Excelsior College and her Doctorate in Nursing at Georgia State University. Dr. Josephs is on the board of Black Women Leaders in Nursing; she is the secretary for "Help for Help Care Professionals," a nonprofit organization providing support and resources for nurses throughout the pandemic, and a mentor to upcoming nurse leaders. Here in Episode #127 Denise shares a leadership mindset for turning visions into reality. She walks us through her fantastic career story, leading into her current role as Vice President of Nursing; and gives us a peek into her daily functions. Denise connects the dots between the role of a Nursing Informatics professional and quality improvement. With her dark place story, Denise teaches us the value of inviting key players to the table. She shares how she leverages empathy and emotions to build authentic connections with her teams. Denise tells the story of her career AHA, centered on nurses leveraging technology to improve quality and safety. She provides a vision on what the future of healthcare looks like after COVID-19, and shares her passion for ensuring quality maintains a focus on the human side of health care · Connect with Denise on LinkedIn · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating · Earn Your Lean Six Sigma for Healthcare Certification · Request a Corporate Demo of our online QI Academy --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
July 20, 2021
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A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff

ONCE UPON A GENE - EPISODE 091 Episode 091 - A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring three people from the rare disease community, sharing a story with a common theme. Patrick James Lynch, Michelle Morganoff and Anna Laurent share stories of re-runs. EPISODE HIGHLIGHTS Patrick James Lynch Patrick shares a story of him and his brother growing up with hemophilia, going to summer camp every year and getting to meet kids affected by a range of illnesses. They later went on to be camp counselors. After Patrick's little brother died, he was devastated and spent years struggling to move forward. He went back to camp as a head counselor, to find himself, to feel productive, to recollect the memories of the summers he spent at camp with his brother. With the closing announcements at the end of summer camp, Patrick felt he had said his final goodbye and realized that no re-run is ever the same as it is the first time you watch it. Michelle Morganoff Special is a new comedy series on Netflix that has Michelle hooked. Special is about a young gay man with cerebral palsy, navigating his way into adulthood and dealing with the real issues that exist in our society. Michelle shares how certain episodes keep her coming back to watch the re-run time and time again. She reflects on how the story lines of each episode make her feel validated, feel seen and how her observations impact her as a mother to her two children- one neurotypical and one neurodiverse.  Anna Laurent Anna shares a story about a small girl who can't be still, scratching her body, in discomfort, and mesmerized by Mulan on the TV. Night after night, the girl fixates on Mulan, she smiles and giggles and she's content with the movie's ending. She watches the movie over and over until her hands slow, her body relaxes and she's finally able to drift off to sleep. For years, the girl is affected by the symptoms of Alagille Syndrome and watching Mulan is her only ticket to a restful night's sleep. Anna shares how the movie offered comfort in difficult, medically complex times and how it still brings joy into her life as a young adult. TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
July 15, 2021
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One Woman’s Year Surviving the Pandemic with a Disability

A young woman living with cerebral palsy shares the struggles, fears and silver linings she’s experienced during the pandemic.Guest: Jeiri Flores, disability rights advocateRead a full transcript and dig deeper into the issues explored in today's episode: https://tradeoffs.org/2021/07/15/one-womans-year-surviving-the-pandemic-with-a-disabilitySign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
July 15, 2021
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Effisode – Family Camp, Annoying Brothers, and the Doom of Packing

Intro music by Scott Holmes
July 13, 2021
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Leadership Insights from an Interface Professional, with Mark Schnitzer, MD

Dr. Mark Schnitzer is an experienced Surgeon, Educator, Physician Advisor, Medical Director, and Consultant. An interest in processes and mathematics led him to pursue an unlikely course of pre-medical study, electrical engineering.  It was during his Ph.D. studies that he applied to medical school and completed his MSEE and MD concurrently.  He completed his clinical training in neurological surgery and a fellowship in neurosciences critical care at The Johns Hopkins Hospital.  His final year at Johns Hopkins was in the role of Assistant Chief of Service. Most recently, he has taken on the role of medical director for a large accountable care organization, part of the Baylor Scott & White Health System, based in Dallas, TX. Mark is board certified in healthcare quality and management by the American Board of Quality Assurance and Utilization Review Physicians with added qualification as a Physician Advisor.  He is a certified professional in healthcare quality by the National Association for Healthcare Quality and is certified by the American Society for Quality as a Six Sigma Black Belt.  Additionally, he is a Fellow of the American College of Surgeons and a Fellow of the American College of Healthcare Executives. Mark has provided several invited presentations in the areas of healthcare informatics and patient safety, and he serves as an examiner for the Malcolm Baldrige National Quality Award. Mark considers himself an interface professional, like most clinicians who have transitioned into healthcare leadership roles.  He maintains a state of constant inquiry and curiosity with the ever-present thought, “There is something I do not know, the knowing of which could change everything.” Here in episode #126 Mark starts our show with a quote that is guaranteed to keep you on your toes when applied. Mark highlights his career path going from a humble start as an electrical engineer, to leading a world-class accountable care organization. He shares several insights on his transitions into executive and quality leadership. Mark spotlights his approach to continuous personal development. Mark tells a phenomenal story of resiliency as he bounces back from a major personal and professional loss. He tells us how he leverages the power of coaching to develop great teams.  Mark highlights the value of physicians learning the business and operational makeup of their health care organization. He shares his excitement for the future potential of ACOs. He coins a new term for us to engage with as quality professionals. Mark places a call to action for leaders to support quality improvement initiatives within their organization and leaves us with his best career advice encouraging us to jump first and then grow our wings.  • Connect with Mark on LinkedIn • Access the Healthcare QualityCast LinkedIn Group • Leaves Us a Rating • Earn Your Lean Six Sigma for Healthcare Certification • Request a Corporate Demo of our online QI Academy --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
July 13, 2021
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Rare Disease Dad and Psychologist Al Freedman, Ph.D

ONCE UPON A GENE - EPISODE 090 Rare Disease Dad and Psychologist Al Freedman, Ph.D Al Freedman, Ph. D is a rare dad to a son with Spinal Muscular Atrophy (SMA), a psychologist who specializes in supporting families affected by rare disease and disability, a speaker, author and such a nice guy. There's a lot of wisdom to gain from his personal experience as a rare disease dad and his professional expertise. EPISODE HIGHLIGHTS Can you tell me about yourself and your son? My son's name is Jack and he was born a healthy baby in 1995. Six months later he wasn't sitting up, rolling over or developing normally. The pediatrician advised us to take Jack to a pediatric neurologist. Jack was soon diagnosed with an untreatable condition called Spinal Muscular Atrophy (SMA) and that he wouldn't be with us for more than a year from his diagnosis. We were traumatized by the diagnosis and prospect of losing our baby, but 25 years later I'm blessed he's still with us. I'm lucky to be his dad and have him here to guide me to help other families facing similar challenges. Were you a Psychologist at the time of Jack's Diagnosis? I was finishing my doctorate in counseling psychology and in my year of internship, so I was just out of school. I planned on being a psychologist, but hadn't planned on needing one so acutely in the middle of my internship. I found myself on both sides of the therapy room. What is the difference between trauma and PTSD? PTSD stands for Post Traumatic Stress Disorder, so it's a form of trauma, but trauma can take on many forms. In working with many families facing rare disease diagnosis and the challenges that come with that, the first thing that's important to know is that they're not crazy but the symptoms can make you feel crazy. Trauma symptoms are real and normal- a normal reaction to very unusual stressors. Does trauma or PTSD ever go away? Most people at the beginning of a rare disease diagnosis journey are more fragile and have more pronounced symptoms due to their lives being flipped upside down and they're disoriented. After time, people are able to meet other people they relate to and get practice in the new world. Depending on the journey and experiences, some may have ongoing trauma responses to triggers. What are the long term effects of living with chronic stress? A lot of the most complicated things I see as a practicing psychologist are solved by looking at three basic things- how you are sleeping, how you are eating and if you can exercise. We can't function well without sleep, proper nutrition and exercise. Long term chronic stress can impact your mental health and eventually your physical health so it's important to care for the caregiver. What message would you like to share with everyone listening? Never give up and keep your hope alive for yourself, your kids, your family. I never imagined back in 1995 that Jack would live this long and be so vibrant. I never imagined something so positive could come from something so painful. Have hope that you'll find meaning in your experience. CONNECT WITH AL FREEDMAN Freedman Counseling Associates Website https://www.freedmancounseling.com/ Freedman Counseling Associates Facebook https://www.facebook.com/freedmancounselingassociates/ Al Freedman Email [email protected] Al Freedman Linkedin https://www.linkedin.com/in/albertfreedman/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
July 8, 2021
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Mental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D

ONCE UPON A GENE - EPISODE 090 Rare Disease Dad and Psychologist Al Freedman, Ph.D Al Freedman, Ph. D is a rare dad to a son with Spinal Muscular Atrophy (SMA), a psychologist who specializes in supporting families affected by rare disease and disability, a speaker, author and such a nice guy. There's a lot of wisdom to gain from his personal experience as a rare disease dad and his professional expertise. EPISODE HIGHLIGHTS Can you tell me about yourself and your son? My son's name is Jack and he was born a healthy baby in 1995. Six months later he wasn't sitting up, rolling over or developing normally. The pediatrician advised us to take Jack to a pediatric neurologist. Jack was soon diagnosed with an untreatable condition called Spinal Muscular Atrophy (SMA) and that he wouldn't be with us for more than a year from his diagnosis. We were traumatized by the diagnosis and prospect of losing our baby, but 25 years later I'm blessed he's still with us. I'm lucky to be his dad and have him here to guide me to help other families facing similar challenges. Were you a Psychologist at the time of Jack's Diagnosis? I was finishing my doctorate in counseling psychology and in my year of internship, so I was just out of school. I planned on being a psychologist, but hadn't planned on needing one so acutely in the middle of my internship. I found myself on both sides of the therapy room. What is the difference between trauma and PTSD? PTSD stands for Post Traumatic Stress Disorder, so it's a form of trauma, but trauma can take on many forms. In working with many families facing rare disease diagnosis and the challenges that come with that, the first thing that's important to know is that they're not crazy but the symptoms can make you feel crazy. Trauma symptoms are real and normal- a normal reaction to very unusual stressors. Does trauma or PTSD ever go away? Most people at the beginning of a rare disease diagnosis journey are more fragile and have more pronounced symptoms due to their lives being flipped upside down and they're disoriented. After time, people are able to meet other people they relate to and get practice in the new world. Depending on the journey and experiences, some may have ongoing trauma responses to triggers. What are the long term effects of living with chronic stress? A lot of the most complicated things I see as a practicing psychologist are solved by looking at three basic things- how you are sleeping, how you are eating and if you can exercise. We can't function well without sleep, proper nutrition and exercise. Long term chronic stress can impact your mental health and eventually your physical health so it's important to care for the caregiver. What message would you like to share with everyone listening? Never give up and keep your hope alive for yourself, your kids, your family. I never imagined back in 1995 that Jack would live this long and be so vibrant. I never imagined something so positive could come from something so painful. Have hope that you'll find meaning in your experience. CONNECT WITH AL FREEDMAN Freedman Counseling Associates Website https://www.freedmancounseling.com/ Freedman Counseling Associates Facebook https://www.facebook.com/freedmancounselingassociates/ Al Freedman Email [email protected] Al Freedman Linkedin https://www.linkedin.com/in/albertfreedman/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
July 8, 2021
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Why Millions Could Lose Medicaid Next Year

A congressional ban on removing anyone from Medicaid is likely to expire early next year. What will happen to people who lose their coverage, and how are states preparing for this unprecedented undertaking?Guests:Sara Rosenbaum, JD, Harold and Jane Hirsh Professor of Health Law and Policy, Milken Institute School of Public Health, George Washington UniversityJami Snyder, Director, AHCCCS Dave Richard, Deputy Secretary, North Carolina MedicaidRead a full transcript and see which states are working ahead to prepare for the end of the public health emergency and state-by-state estimates of how many people could lose coverage on our website: Dig deeper into the issues explored in today's episode: https://tradeoffs.org/2021/07/08/why-millions-could-lose-medicaid-next-year/Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
July 8, 2021
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S1.Ep4: How Personalised Health Can Unleash the Power of Transformative Clinicians

Transformative clinicians— clinicians who develop and deliver healthcare in innovative ways— can be found throughout medical history. They have been key to nearly every advancement we've made in helping people live longer, healthier lives, and they will be just as crucial to delivering on the promise of personalised health, too.  But it's not always easy to be a pioneer. There are a number of barriers that can discourage clinicians from prescribing new therapies or diagnostic tools, pursuing novel drug research, or trying a new approach to care.  In this episode, host Tony Estrella and guest experts Dr. Rhoda Au and Dr. Nares Damrongchai explore three of these barriers and offer insights into how health systems can enable more clinicians to embrace the innovation that will come from personalised health. They also discuss success stories from around the world that showcase how transformative clinicians are already changing the face of health. Show Links: Future Proofing Healthcare Podcast: Website | Twitter | LinkedIn | Facebook | Instagram FPH Personalised Health Index Tony Estrella: Twitter | LinkedIn | Website | Digital Health Today: Asia Pacific Edition Guests Links: Dr. Nares Damrongchai: LinkedIn | Twitter Dr. Rhoda Au: LinkedIn Genepeutic Bio Co., Ltd.: Website | LinkedIn Framingham Heart Study: Website | LinkedIn | Twitter| Facebook Davos Alzheimer's Collaborative: Website For a full list of the sources used to research this episode, and for additional information about the show, please visit: futureproofinghealthcare.com/podcast
July 7, 2021
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S1.Ep4: How Personalised Health Can Unleash the Power of Transformative Clinicians

Transformative clinicians— clinicians who develop and deliver healthcare in innovative ways— can be found throughout medical history. They have been key to nearly every advancement we've made in helping people live longer, healthier lives, and they will be just as crucial to delivering on the promise of personalised health, too.  But it's not always easy to be a pioneer. There are a number of barriers that can discourage clinicians from prescribing new therapies or diagnostic tools, pursuing novel drug research, or trying a new approach to care.  In this episode, host Tony Estrella and guest experts Dr. Rhoda Au and Dr. Nares Damrongchai explore three of these barriers and offer insights into how health systems can enable more clinicians to embrace the innovation that will come from personalised health. They also discuss success stories from around the world that showcase how transformative clinicians are already changing the face of health. Show Links: Future Proofing Healthcare Podcast: Website | Twitter | LinkedIn | Facebook | Instagram FPH Personalised Health Index Tony Estrella: Twitter | LinkedIn | Website | Digital Health Today: Asia Pacific Edition Guests Links: Dr. Nares Damrongchai: LinkedIn | Twitter Dr. Rhoda Au: LinkedIn Genepeutic Bio Co., Ltd.: Website | LinkedIn Framingham Heart Study: Website | LinkedIn | Twitter| Facebook Davos Alzheimer's Collaborative: Website For a full list of the sources used to research this episode, and for additional information about the show, please visit: futureproofinghealthcare.com/podcast
July 7, 2021
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From Blue Oceans to Hooray Health with Shane Foss

With over 20 years of tenure as an executive in the medical industry, Shane Foss became frustrated with how under-served Americans were with the current healthcare options. He set out to make a change and in 2018 achieved this goal through launching Hooray Health, an unconventional health insurance company dedicated to providing affordable basic and urgent health care alternatives to high-deductible health plans. Through Hooray Health, Foss and his team focus on offering peace of mind to lower-income individuals and families who face medical challenges, while also providing business owners with an affordable way to reward and retain employees. Partnering with companies like Sedera, Ameritas, and Aflac, they have been able to add critical services and supplemental plans giving immense value to employers and individuals. Throughout his professional experience, Foss has negotiated complex, multi-million-dollar contracts, worked in device sales management, created business strategies, and optimized P&L. He holds an MBA from Rice University’s, Jone’s School of Business, a BS from the University of the Incarnate Word, and a Surgical Technologist Certificate from the United States Air Force. Here in Episode #125, Shane starts our show with a mindset centered on leveraging failures into future successes. Shane shares details on the path that led him into the world of healthcare insurance and benefits. He connects the foundations of Hooray Health with Blue Ocean Strategies. Shane encourages us to challenge the current norms across the healthcare industry and to have the courage to carry the changes through to the end. He shares the ins and outs of starting a healthcare insurance company. He highlights the lessons learned from his biggest failure and success as CEO of Hooray Health. Shane shares his tops leadership strategies, as well as the impact his biggest mentor has left on him. He highlights consolidation and legislation as the two biggest risks lingering over healthcare; and how technology will continue to drive future industry transformations and provides insights on how Hooray Health uses technology to add value to its clients. · Connect with Shane on LinkedIn · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating · Earn Your Lean Six Sigma for Healthcare Certification · Request a Corporate Demo of our online QI Academy
July 6, 2021
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Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle

ONCE UPON A GENE - EPISODE 089 Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle Exposed first hand to research of genetic diseases and the lack of information known, my guest quickly realized the need to streamline the process of translating genetic data into therapeutic discoveries. James Doyle is the Co-Founder and CEO of Modelis whose mission is to rapidly advance personalized drug discovery for rare genetic diseases.  EPISODE HIGHLIGHTS What is your background and what drew you to this field of research? I'm a scientist by training, but an entrepreneur by spirit. My background is in molecular genetics and I like to understand how genes work, what they do and how mutations of genes influence function and lead to a disease. Along with a couple of colleagues, Modelis was founded which is a biotech company that does drug screening and translational drug discovery for rare genetic disorders using small animal models to accelerate the process.  What is translational drug discovery? It's the bench to bedside approach of taking findings from a lab to a clinical, real world setting where they can have a real world impact.  What is the process for a patient organization or advocacy group who is seeking research? An initial feasibility study is conducted on small animal models to see if the gene is a good candidate for the models. Genetic avatars of the patients are created with worms using genetic engineering techniques. The animals are used to better study the disorder, the underlying causes of the disease and drug screening. The worms are used to rapidly discover drugs with a high translational potential. The next step is to validate the findings in zebra fish and then potentially a rodent model to further validate drugs. How does Modelis help to accelerate research? For a lot of disorders, it's rarely a one-size-fits-all equation. Research can be accelerated through leveraging different approaches in a complimentary manner, like exploring drug repurposing with small animal models while also pursuing gene therapy.  What is the cost for a patient organization who is seeking drug research? It depends, but it's a customized approach based on each specific disorder. We work with groups through venture philanthropy or social impact investing and strive for collaborative wins that can be shared back with the community who initiated the research. LINKS AND RESOURCES MENTIONED Once Upon Gene TV - Disorder Channel https://www.thedisordercollection.com/ CONNECT WITH MODELIS Modelis Website https://modelis.ca/ Modelis on Twitter https://twitter.com/ModelisLabs Modelis on Facebook https://www.facebook.com/ModelisLabs/ Modelis on LinkedIn https://ca.linkedin.com/company/modelis-inc TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
July 1, 2021
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One County’s 20-Year Effort to Decriminalize Mental Illness

Many cities across the United States are rethinking the role of police in responding to mental health emergencies. Miami-Dade County has spent the last two decades revamping their policing — along with many other aspects of how their criminal justice system treats people in crisis. What lessons have they learned?Guests:Steve Leifman, JD, Associate Administrative Judge, Eleventh Judicial Circuit Court of Florida; Founder, Miami-Dade County Criminal Mental Health ProjectCarol Caraballo, MSW, MPA, LCSW, Vice President of Behavioral Health Services, Thriving Mind South FloridaDig deeper into the issues explored in today's episode: https://tradeoffs.org/2021/07/01/one-countys-20-year-effort-to-decriminalize-mental-illnessSign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
July 1, 2021
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Effisode – Heatwaves and a Happy Birthday

Intro Music by Scott Holmes
June 29, 2021
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From QI Project to Industry Best Practice with Andrew K. Stein MBA PMP

Andrew has delivered results in the private, public, and non-profit sectors for more than 15 years. His passion is helping people be their best at work. As President of Hospital Programs at 1Unit, Andrew is a trusted advisor for hospital leaders who want to protect against fragmented care and unnecessary variation. In this role, he handles account relationships, new partnerships, and customer success. He leads the business side so that 1Unit's clinical experts can focus on working shoulder-to-shoulder with nurses, physicians, and allied health professionals. To do so, Andrew draws on his strong track record of organizational transformation. He has helped hundreds of large organizations from Anthem to the Veterans Administration align people, processes, and technology to grow, innovate, and solve their most complex problems. When Deloitte leaders were asked to help 30 senior leaders and diplomats at the U.S. State Department redesign the whole organization in five days, they tapped Andrew to lead, design, and facilitate the process. Andrew's toolkit is a mix of high tech and high touch and includes strategy development, visioning sessions, training design, change management, performance improvement, and statistical analysis. Andrew earned his MBA from Goizueta Business School at Emory University (as a full Woodruff Scholar) and his mechanical engineering BA from Brown University. He is a certified Project Management Professional (PMP), and he loves traveling and returning home from travel to get some sleep. Here in Episode #124, Andrew starts our show with a mindset around leading and guiding teams. Andrew shares highlights from his impressive management consulting career path, where he gained expertise in helping organizations to optimize their people, processes, and technologies. We discuss aspects of Andrew’s background connected with creative problem solving and facilitation. He tells us the 1-Unit origins stories and highlights customer success stories connected with their focus around implementing standard work and data transparency. Andrew shares best practices for change management strategies that his team uses regularly. We talk through his best moments of learnings connected with coaching teams around new work processes. Andrew shares three critical skills that all health care leaders should have on their radars. He teaches us why our improvement work should center on delta, breadth, scale, and durability. And gives us his favorite tools and techniques for team facilitation. · Connect with Andrew on LinkedIn · Learn more about 1Unit · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating · Earn Your Lean Six Sigma for Healthcare Certification · Request a Corporate Demo of our online QI Academy
June 29, 2021
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#20 Telemedicine after COVID: Conversations with Congress, Part 2

This part two episode of a three-part series for AAOS’ Orthopaedic Advocacy Week focuses on ensuring that flexibilities for valuable telemedicine services remain post-pandemic. Adam S. Levin, MD, FAAOS, who helped rapidly introduce a robust telemedicine program for the Johns Hopkins Orthopaedic Department during a five-day period, interviews U.S. Representative Buddy Carter (R-Ga.) on his recently introduced Telehealth Modernization Act. Learn more at AAOS.org Hosted by: Adam S. Levin, MD, FAAOS, Johns Hopkins Hospital
June 29, 2021
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#11 Brian Dolan: AI, mathematics, and the future of technology.

Brian Dolan is a Los Angeles-based mathematician, inventor, and cyberneticist. Brian excels at translating complex business problems into tractable mathematical solutions. He leverages 10 years of C-level experience with premier brands such as MySpace, Ya-hoo, Greenplum, and Deep6 AI. He also advises multiple companies from seed to growth stage. Currently, Brian leads Verdant AI an innovation lab and startup studio that advances technological breakthroughs in AI with a special focus on health and ecology. We talked about how AI reflects the culture of our civilization, the best approaches for creating MVPs of AI-related products, and the future of technology. 
June 27, 2021
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The Aducanumab Aftermath: The Industry

How is the pharmaceutical industry reacting to the FDA’s surprising approval of a controversial Alzheimer’s drug, and what do they make of its $56,000 price tag?This is the last episode in our weeklong series examining the potentially sweeping consequences this drug, known as aducanumab, could have on millions of patients’ lives and billions of dollars in health care spending.Guest:Luke Timmerman, Journalist/Founder, Timmerman ReportExplore the full series and additional resources: https://tradeoffs.org/aducanumabRead a transcript of this episode: Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
June 25, 2021
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Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley

ONCE UPON A GENE - EPISODE 088 Living with Persistent Uncertainty Without a Rare Disease Diagnosis - Meghan Halley I met Meghan Halley on the NORD Living Rare Living Stronger planning committee. She co-chairs the patient and family support group for the Undiagnosed Diseases Network. She's a Stanford research scholar and a mom to her undiagnosed son Philip.  EPISODE HIGHLIGHTS Can you share about yourself? I'm the mom of three kids and my middle son Philip, who is six years old, is undiagnosed with a rare condition. I've become more involved in advocacy as it relates to access to diagnosis for individuals with rare disease, particularly ultra rare. Because Philip is a patient in the Undiagnosed Diseases Network, I became involved in advocating UDN as a resource for the rare disease community. I am a medical anthropologist and a research scholar at the Center for Biomedical Ethics (SCBE) at Stanford University. I do research on the experiences of patients and families with ultra rare and undiagnosed diseases, with a particular focus on how stakeholders involved in providing sequencing have different values and how that determines who has access. Philip is at the core of everything because after three years, he still doesn't have a diagnosis.  Why are you advocating for the UDN as a resource? Philip had several complex medical issues which didn't fit together and we were introduced to the UDN. It was developed and expanded as the tools of exome and genome sequencing for diagnosis of rare disease was better understood. With the expansion they identified clinical sites and scientists interested in advancing the science of rare disease diagnosis through a case study approach where they worked with patients and families who had clinical indicators, but no genetic diagnosis. I became more involved to support patients and families, but I've learned the program will eventually be de-funded and the operation and support of families and patients from the UDN for will be at risk.  How do you embrace the uncertainty of having an undiagnosed child? I definitely live with uncertainty having a child with complex medical needs with no data to guide us. Managing decision making is the hardest aspect, as well as not knowing what the future holds. Without a diagnosis, we can't even begin to think about therapies and we don't have the benefit of connecting with others on research and advancement that others can take advantage of. Being a mom, it's difficult to maintain normalcy for my other children, find balance and take care of myself through daily life. What advocacy outcomes are you most proud of? My husband and I are still a team, my children are happy and thriving. I began by advocating for Philip, but as I've forged, pathways have stayed open for other families. I'm proud of what I've been able to achieve in getting services for Philip and he's thriving above and beyond what would probably be expected. I'm still learning from others how to navigate advocacy and I'm excited to keep learning from others who do this work so effectively in the rare disease community. I'm proud to be a part of this community and I'm grateful for the relationships I've formed. TUNE INTO THE ONCE UPON A GENE PODCAST Once Upon Gene TV - Disorder Channel https://www.thedisordercollection.com/ Undiagnosed Diseases Network https://undiagnosed.hms.harvard.edu/ Undiagnosed Diseases Network - Facebook https://www.facebook.com/udnconnect/ UDN Families - Facebook https://www.facebook.com/groups/udnpeer/ When All You Have Is Quality of Life — Making Medical Decisions in the Face of Uncertainty https://www.nejm.org/doi/full/10.1056/NEJMp2001574 CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
June 24, 2021
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