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Rare Disease Siblings, The Glass House Children – Bulletproof and Shattered – With SMA Sibling Cara Freedman

ONCE UPON A GENE - EPISODE 148 Rare Disease Siblings, The Glass House Children - Bulletproof and Shattered - With SMA Sibling Cara Freedman August is Spinal Muscular Atrophy (SMA) Awareness Month and sibling Cara Freedman joins me to discuss her experience growing up with her older brother Jack. EPISODE HIGHLIGHTS Can you tell us about your family? I'm 22 years old and just graduated college with a degree in biochemistry and molecular biology. My older brother passed away in October from SMA Type 1. He was wonderful, always had a smile on his face and acted like he didn't have a care in the world.  What was it like to be the sibling to Jack growing up? Before I went to school, I didn't know that having a brother like Jack was out of the norm. Attending school changed everything when I realized my peers noticed Jack in a way I hadn't before. It made me feel different and I isolated myself for a bit. If 22 year old me went back to elementary school, I'd do something and stand up for myself. I treated Jack like a normal older brother, he teased me, I ignored him, he'd run me over with his wheelchair, and we did the typical sibling things.  What helped you cope when you were growing up? When I met people, it helped me feel normal to withhold that I had a brother with a rare disorder so they could get to know me first. It helped me to gain power back. I also spent a lot of time by myself, learning who I was and learning that I didn't rely heavily on anyone else.  What boundaries did you have growing up to protect your mental health? Something that helped was accepting that it was okay to want to get away to be alone and separate myself from chaos. It was also common for me to reserve medical talk for only when it was necessary. I did my best to remind myself that it was okay not to fit into a sibling mold and feel what I needed to feel. What effect has growing up with Jack had on you as an adult? I gained patience for myself and others and empathy through caring for other people. I find myself to be an empath and feel a lot of what other people feel, mostly because I could never feel what Jack and I always want to get into other people's shoes and understand who they are. I still care too much about what others think about me. LINKS & RESOURCES MENTIONED Global Genes Patient Advocacy Summit https://globalgenes.org/event/rare-patient-advocacy-summit/ Episode 090 - Mental Health and chronic stress with Rare Disease Dad and Psychologist Al Freedman, Ph.D https://www.bloodstreammedia.com/once-upon-a-gene-episodes/episode-090-mental-health-and-chronic-stress-with-rare-disease-dad-and-psychologist-al-freedman-phd NORD https://rarediseases.org/ 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/ Once Upon a Gene TV https://www.thedisordercollection.com/
August 18, 2022
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To scribe or not to scribe? That is the question.

"I was working at an urgent treatment center, where a busy Saturday in January would be overwhelming. At one point, I hired a scribe. She was a bright young woman interested in medicine and some alacrity with computers. It was a pleasant change of pace for me. She would accompany me into the exam room under instructions to remain unobtrusive and abide by HIPAA. I found that she could record the pertinent negatives and positives on the physical exam and the review of systems. She could record the assessment and plan as well. I was then able to give the patient my full attention during their 15-minute visit. I could even maintain eye contact and have a conversation without the distraction of a computer screen demanding my attention. I could feel like a human being instead of a data entry clerk." Janet Tamaren is a family physician and author of Yankee Doctor in the Bible Belt: A Memoir. She can be reached at her self-titled site, Dr. Janet Tamaren, and on Twitter @jtamaren. She shares her story and discusses her KevinMD article, "To scribe or not to scribe? That is the question." Did you enjoy today’s episode? Rate and review the show so more audiences can find The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out. Click here to earn 1.0 AMA PRA Category 1 CME for this episode. Also available in Category 1 CME bundles. Powered by CMEfy - a seamless way for busy clinician learners to discover Internet Point-of-Care Learning opportunities that reward AMA PRA Category 1 Credit(s)™. Learn more at about.cmefy.com/cme-info
August 18, 2022
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On The Pulse: Who’s to Blame?

There has been recent media coverage surrounding a nurse who was convicted of a criminally negligent homicide and impaired adult abuse after mistakenly administering the wrong medication that killed a patient in 2017. This is a rare conviction but one that calls for us to reconsider how we ensure accountability for everyone. Today’s show will focus on building just culture within health care and creating environments where we can reduce medical errors and improve systems for better outcomes, accountability, and quality of care. Guests include Johns Hopkins School of Nursing Assistant Professors Jennifer Milesky and Nicole Mollenkopf. Podcast References and Resources: What Is Just Culture? Changing the way we think about errors to improve patient safety and staff satisfaction Patient Safety and the Just Culture Just culture: It's more than policy ISMP Medication Safety Alert Newsletters American Association of Critical-Care Nurses Policy and Advocacy Society of Critical Care Medicine -| The Nurse Podcast Channel is made possible with support from IHI. Learn more about how IHI is transforming health care education at IHI.org -| This episode originally aired on May 23, 2022 on On The Pulse. Listen, follow and subscribe here.
August 18, 2022
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Has Medicaid Managed Care Delivered On Its Promise?

Letting private insurers offer Medicaid coverage was supposed to lower costs and improve care. We dig into the research on Medicaid managed care.Guests:Sayeh Nikpay, PhD, Tradeoffs Contributing Research Editor; Associate Professor of Health Policy and Management, University of MinnesotaKathleen Adams, PhD, Professor of Health Policy and Management, Rollins School of Public Health at Emory UniversityAllan Baumgarten, JD, Independent Health Policy AnalystRead more of the research on Medicaid managed care and find a full transcript on our website: https://tradeoffs.org/2021/11/04/medicaid-managed-care/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. If you give before Dec. 31, 2021, your donation will be doubled thanks to a match from the Institute for Nonprofit News: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod Our GDPR privacy policy was updated on August 8, 2022. Visit acast.com/privacy for more information.
August 18, 2022
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Episode 70: Data Collection and Analysis in Rural Health

There are many entities that rate and evaluate hospitals for quality, safety and more. However, rural hospitals are often overshadowed or misjudged due to data collection techniques, metric designs that automatically disadvantage rural hospitals with smaller numbers, and the lack of concern for the subsequent misleading results. This week, we welcome someone who specializes in data collection and analysis for rural hospitals as we try and get an accurate picture of the challenges and successes of rural hospitals. Our guest today is Michael Topchik, National Leader of the Chartis Center for Rural Health.
August 18, 2022
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[BEST OF VAX ON] Vax On: The Masks Are Off with Stephanie Santoriello!

Original Air Date 02/10/2022 — Got orange sauce?Visit offscrip.com/shows for more podcasts.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
August 18, 2022
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Shot of #DigitalHealth Therapy – Jared S. Taylor – Bloc Health

For all of the avid followers of #TheShot of #DigitalHealth Therapy, Jim Joyce and I recorded our shortest episode EVER and got an awesome micro-dose of Jared S. Taylor - Founder of BlocHealth (now part of SteadyMD) and a fellow podcaster: 🎤 How he bet it all on Bloc! 🎤 Few "heard it here firsts" 🎤 Great Leaders in health care 🎤 Common threads across 500+ interviews at Slice of Healthcare 🎤 oh and .... Livongo #digitalhealth mafia 😂 Fun mentions as always: Martin Kelly Daniel Couchman Kendall Guy Friedman Glen Tullman Lee Shapiro Jennifer Schneider, M.D., M. S. Naomi Allen
August 17, 2022
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FOGI: Know the System before Diving into Nursing Informatics with Robert Abda, Clinical Informaticist at Universal Health Services

Are you thinking of becoming a nurse informaticist? This conversation is for you! In this episode of the Future of Global Informatics, TJ Southern is joined by Robert Abda, a registered nurse clinical informaticist at Universal Health Services. He talks about his role as a clinical informaticist at a corporate level doing project management and custom development, as well as other work possibilities and opportunities in nursing informatics. Robert also discusses exciting changes happening around data transparency, cybersecurity, and education that might bring awareness to the role of nurse informaticists. Furthermore, he provides advice and encouragement for people considering a career in nursing informatics. Tune in to listen to Robert Adba speak about nursing informatics and what excites him in this field! Click this link to the show notes, transcript, and resources: outcomesrocket.health
August 17, 2022
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Episode 17: Reimagining Nursing: A Joint Episode with Humana

This episode features Johns Hopkins School of Nursing Dean Sarah Szanton and Humana Chief Nursing Officer Kathy Driscoll. The conversation covers the value of nursing and how nursing’s influence will reimagine the future of health. Podcast References and Resources: Johns Hopkins School of Nursing Humana Here is how we can reimagine nursing in Florida | Column
August 17, 2022
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EP. 97 When you are “the only”: Carla Smith’s NEVER and ALWAYS principles

Laurie McGraw is speaking with Inspiring Woman Carla Smith, a health sector strategist and Founder of Carla Smith Health.  Over Carla’s storied career working with countless organizations, health systems, providers, payers, technology companies, ...
August 17, 2022
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NEJM This Week — August 18, 2022

Featuring articles on glycemic criteria for the diagnosis of gestational diabetes, a randomized trial of metformin, ivermectin, and fluvoxamine for Covid-19, and children with acute hepatitis of unknown cause; a review article on neuromyelitis optica spectrum disorder; a case report of a woman with headache and blurred vision; and Perspective articles on confronting health worker burnout, on tecovirimat and the treatment of monkeypox, on framing traumatic injury as a chronic condition, and on professionals as targets in the culture wars. Supplement to the New England Journal of Medicine, Vol. 387, No. 7.
August 17, 2022
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The Precision Longevity Series Part 2

How well do you know yourself.... from the inside out?  In this episode of HOT for your Health Dr Wright is joined by pre-eminent longevity scientist, nutraceutical formulator and creator of the AgingSOS biomarker test, Dr Jin-Xiong She.  Over the course of his career Dr She has participated in over 16,000 scientific publications and received more than $100 Million in research funding.  Dr She details the important biomarkers of aging and how to use your levels to optimize energy stores via NAD+ supplementation and eliminate circulating senescent cells that contribute to aging, disease and cancer.   To learn more about The Precision Longevity Experience connect with Dr Wright via www.drvondawright.com
August 17, 2022
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The Human Engineer: How to Heal People a Different Way with Dr. T. Ep 12

Do you want to live a longer, healthier life without relying on medication? Are you tired of being told to eat right and exercise, but not seeing any results? If you're looking for an alternative way to improve your health, then this episode is for you. In this episode, you will learn:  1. The mind's ability to heal the body 2. Remote healing 3. The power of intention and focus "I just need more knowledge, I need more knowledge. And I finally woke up one morning and it was just clear in my mind that I needed to go to school and become a doctor or an acupuncturist or something." Dr. T is a chiropractor, certified clinical hypnotherapist, and massage therapist who has transformed the way of healing wealth and well-being of thousands of people and animals using focusing intention angels and quantum physics. He is known as a human engineer. Dr. T was always interested in the human body and healing. He became a chiropractor and then later discovered a unique healing modality called angelic healing. This modality uses quantum physics and focuses on the intention of the practitioner to heal the patient. Dr. T has used this modality to successfully heal many people, even remotely. Connect with me: Loved this episode? Leave us a review and rating here: {SabrinaRunbeck.com/Apple-Podcast}
August 17, 2022
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Unseen Opportunities in Mental Health ft. Dr. Martin Hickey, New Mexico State Senator

It’s no secret that healthcare in America is broken, especially when it comes to behavioral health where it is often ignored. What are the ramifications and impact not only for patients, but for providers and payers? How can shining the spotlight and investing in behavioral health result in greater opportunities and better outcomes for healthcare organizations? Join Dr. Martin Hickey, New Mexico State Senator, as he shares how investing in mental and behavioral health has helped healthcare organizations in New Mexico transform their strategies and programs, leading to better financial and patient health outcomes. This conversation is brought to you by Actium Health in partnership with the Forum for Healthcare Strategists. Our GDPR privacy policy was updated on August 8, 2022. Visit acast.com/privacy for more information.
August 17, 2022
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What you need to know about monkeypox

"What is currently known is that monkeypox is transmitted primarily through close contact with skin lesions, bodily fluids, and respiratory droplets. Men aged between 20 and 50 years, many of whom have sex with other men (MSM), are notably included in a majority of the cluster cases, thereby indicating that sexual contact may be a significant route of transmission. The correlation with sexual activity does not corroborate increased contamination or virulence; it simply highlights that close contact and skin lesions may allow for monkeypox to spread most effectively." Divya Srinivasan is an undergraduate student. Tejas Sekhar is a graduate student. They share their stories and discuss the KevinMD article, "What you need to know about monkeypox." Did you enjoy today’s episode? Rate and review the show so more audiences can find The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out. Click here to earn 1.0 AMA PRA Category 1 CME for this episode. Also available in Category 1 CME bundles. Powered by CMEfy - a seamless way for busy clinician learners to discover Internet Point-of-Care Learning opportunities that reward AMA PRA Category 1 Credit(s)™. Learn more at about.cmefy.com/cme-info
August 17, 2022
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#162: Creating Your “Personal Style” through Personal Alignment with Alma Barrero

In this episode, we talk with our special guest Alma Barrero about her book "Style Power" and the importance of creating your "Personal Style" through personal alignment. Alma is an intuitive style coach, a former corporate executive, a wife, and a mother. Her proprietary Style Power Formula™ is a simple and life-changing philosophy for creating a wardrobe that aligns with who you truly are. She's also an international speaker, mentor, and entrepreneur who helps her clients from both the entrepreneurial and corporate world to create a life-changing connection with their wardrobes while manifesting more freedom and success in their life. Alma shares the three pillars of The Style Power Formula™ and how she created her own version of style. We also talk about her journey regarding a personal health issue and how she redefined her relationship with her body. For full show notes and links, visit: https://www.missinglogic.com/new-podcast If you found value in this episode, please subscribe and leave us a review on Apple Podcasts! Future Event: Virtual Leadership Survival Bootcamp, September 26 - 30, 2022 The Virtual Leadership Survival Bootcamp is a virtual Bootcamp designed for healthcare leaders like you to learn about and apply a proven strategy that will get you through the next six months or more. Learn to create balance between your professional and personal life, make a difference at work, and experience more joy, without feeling exhausted and overwhelmed. Click here to join the waitlist and be the first to know when the doors are open! SOCIAL MEDIA LINKS: https://www.linkedin.com/company/missinglogic-llc https://www.facebook.com/missinglogicLLC https://twitter.com/MissingLogicLLC https://www.instagram.com/missinglogic_llc/
August 17, 2022
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Salvo Health: Travelocity and FourSquare Exec Jeff Glueck Has Raised $10.5M to Disrupt the GI Health Market

In health innovation – which is the world we inhabit at StartUp Health – there are certain issues that get the lion’s share of attention. Think wearables for tracking daily activity or new mental health solutions. A lot of attention is going towards interventions for seniors and addressing issues of loneliness and isolation. These are wonderful areas of development. But there are other areas of health that have huge implications across society, yet have a way of flying under the radar. There’s stigma – like our hesitance to talk about mental health struggles – and then there’s society’s reaction to gastrointestinal conditions. GI problems. Irritable bowel syndrome or IBS. Celiac disease. The list goes on. Each year, 62 million Americans are diagnosed with a digestive disorder. Another 30 million go undiagnosed. They’re often too embarrassed to even talk to their primary care provider about it, so they suffer in silence, and it has negative ripple effects across their entire life. Well, all that seems to be about to change. The virtual healthcare revolution has reached the GI market with the launch of Salvo Health a company that’s using virtual care to bring the best gut health tools and therapies to millions of people. Heading up the effort is CEO and Co-founder Jeff Glueck, who is our guest on today’s episode. Jeff is a tech industry veteran, having been Chief Marketing Officer at Travelocity during their meteoric rise, and the CEO of the social app FourSquare. He’s leveraging that experience to disrupt an old school industry and bring relief to millions. The company, which joined StartUp Health last year, has just announced a $10.5M Seed raise to bring Salvo out of stealth mode and start to scale in earnest. How’s Jeff going to use his experience at Travelocity and FourSquare to disrupt the GI health market? We’ll let him explain in the interview. Entrepreneurs: How to get investment from StartUp Health startuphealth.com Investors: How to invest in StartUp Health Moonshots healthmoonshots.com Want more content like this? You can subscribe to the podcast as well as other health innovation updates at startuphealth.com/content. Sign up for StartUp Health Insider™ to get funding insights, news, and special updates delivered to your inbox. Passionate about Type 1 diabetes? If you’re an entrepreneur or investor, contact us to learn how you can join our T1D Moonshot.
August 16, 2022
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SONSIEL: Innovation: It’s Mostly About Your Network with Kathleen McGrow, Chief Nursing Information Officer at Microsoft

A bridge between the clinical and technical sides of healthcare would solve so many challenges nurses are facing today. This episode features a very hands-on trauma critical care nurse who turned to informatics when she realized how important it would be in healthcare. This week’s guest on the SONSIEL Podcast is Kathleen McGrow, Chief Nursing Information Officer at Microsoft. She talks about her journey as a nurse, technology, and communicating clinicians’ needs to developers to push transformational innovations. She explains what it means to take a great idea and deliver it into something actionable for many people, sharing a lived experience where she helped build an electronic health record for the Amazon basin. Kathleen also speaks of the importance of networking and having social support when facing humbling situations and driving innovative initiatives toward development. Tune in to this episode to learn about leveraging technology to improve processes and patient outcomes! Click this link to the show notes, transcript, and resources: outcomesrocket.health
August 16, 2022
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Remote Ischemic Conditioning for Acute Ischemic Stroke, Thrombotic Events With COVID-19 vs Influenza, Treatment of Extremely Preterm Neonates, and more

Editor’s Summary by Kirsten Bibbins-Domingo, PhD, MD, MAS, Editor in Chief of JAMA, the Journal of the American Medical Association, for the August 16, 2022 issue.
August 16, 2022
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Managing Hypertension in the Elderly

Guest: Sandra J. Taler, M.D. Host: Darryl S. Chutka, M.D. (@ChutkaMD) It’s estimated that over 70% of those 65 and older have hypertension and there’s good evidence to show that less than half of these elderly individuals are adequately controlled. While there are many similarities between hypertension in the elderly and the general population, there are also some important differences. The elderly are more likely to have systolic hypertension, take multiple medications and they’re more likely to experience more frequent and serious adverse drug reactions. In this podcast, we’ll learn more about hypertension in the elderly from Sandra J. Taler, M.D., a nephrologist and hypertension specialist at the Mayo Clinic in Rochester, Minnesota. Connect with the Mayo Clinic’s School of Continuous Professional Development online at https://ce.mayo.edu/ or on Twitter @MayoMedEd.
August 16, 2022
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DOCSF22: Digital (Orthopaedic) Transformation: Human-Centered Design and System Thinking in Health Care

In this episode, Kenny O'Neill, partner, and principal of Digital Strategy, Transformation, and Innovation at EY Global, talks about human-centered design, how it then evolves into systems thinking, and its applicability. Kenny starts by talking about his experience as a pilot and the similarities between what he sees in healthcare and a plane cockpit when it comes to information being displayed to users. He then explains how human-centered design is building things for specific users, integrating the information into the system so that it can work effectively for the said user. This type of design requires engaging and empathizing with them, prototyping continuously, and always aiming toward extreme users to get the best possible performance for everyone.  Kenny goes into systems thinking at scale within healthcare. He argues it's about thinking about how human-centric design and technology connect to the broader, interconnected system. It’s innovating in the digital space and using platforms to aggregate and translate data that can better enable AI, machine learning, and robotics. He also speaks of taking behavioral and social ecosystems into account and the use of digital hospital practices, consultations, and primary care from smart homes. Kenny then foresees 15 years forward to envision healthcare’s future. He predicts out-of-hospital precision medicine facilities, more digital tools integrated into hospitals, and different bundled or episodic payment models. Listen to Kenny O’Neill talk about human-centered design in the future of healthcare. Learn about how it can evolve into systems thinking and how it can be applied for the better!
August 16, 2022
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40: Improving Diabetes Care from Austria to America

Meet Frank Westermann:Frank Westermann is a multi-time founder. He is the co-founder and co-CEO of 9am.heatlh and the founder and CEO of Whitewater Ventures LLC. Previously, he was also the co-founder and CEO of mySugr, which was acquired by Roche. Frank earned a diploma in Business Administration from the Otto Friedrich University of Bamberg as well as from the Düsseldorf University of Applied Sciences. He also completed an Erasmus Year in Business Management at the University of Angers. Key Insights:Frank Westermann was diagnosed with diabetes, and has since founded two companies that make diabetes care more convenient, affordable, and holistic.  Behind the Why. Frank understands what is annoying, complicated, and frustrating about diabetes management because he was diagnosed with type one diabetes. His experience inspired him to found mySugr and 9am.health. Additionally, many of 9am.health’s care specialist live with diabetes themselves, so they understand the patient perspective.Europe vs America. mySugr benefitted from Austrian government grants that didn’t require equity in exchange. However, Frank notes that if you want to build a business bigger and faster, America provides access to larger financial resources.Follow Your Gut.Frank’s one piece of advice for entrepreneurs is to be really passionate about what you do, and then follow your gut. Sometimes it’s hard, because some decisions seem logically correct, but if it doesn’t feel right, don’t do it. This episode is hosted by Lynne Chou O’Keefe. She is a member of the Advisory Council for Day Zero and is the Founder and Managing Partner of Define Ventures. Relevant Links:Learn more about 9am.healthLearn more about mySugr
August 16, 2022
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You’re Never Too Old to Play

August 16, 2022
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Misaligned expectations lead to conflict, burnout, and disillusioned physician leaders

"Would you expect the chef at a restaurant to be told that they are not only required to prepare the food in the kitchen but also deliver it to each of the tables and manage the billing? What about sorting out the restaurant's finances or understanding the number of patrons that need to flow through per night to optimize income? If this sounds unreasonable, how did we end up asking physicians to undertake multiple roles in our health care organizations for which they have not trained? This expectation has led to untenable work environments, and we need to find solutions." Amanda Brisebois is an internal medicine physician and palliative medicine specialist. Book a call with Dr. B to talk about conflict in your workplace. She shares her story and discusses her KevinMD article, "Misaligned expectations lead to conflict, burnout, and disillusioned physician leaders." Did you enjoy today’s episode? Rate and review the show so more audiences can find The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out. Click here to earn 1.0 AMA PRA Category 1 CME for this episode. Also available in Category 1 CME bundles. Powered by CMEfy - a seamless way for busy clinician learners to discover Internet Point-of-Care Learning opportunities that reward AMA PRA Category 1 Credit(s)™. Learn more at about.cmefy.com/cme-info
August 16, 2022
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Preventing Blindness with Early Mobile Eye Disease Detection Spect CEO discusses eye disease screenings for early diagnosis and treatment.