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    patient advocacy

    Explore " patient advocacy" with insightful episodes like "S5 - E5.2 - NITs In The Diagnosis and Treatment Of Advanced MASH Fibrosis Patients", "The Power of AI, Patient Advocacy, and Innovation | A Conversation With Irma Rastigaeva and Evan Kirstel | Health Exposed Podcast With Tyler Cohen Wood", "Rare Disease Day 2024: Highlighting Patient Stories and Advancements in Rare Disease Research", "S5 - E3.2 - How Did The Delphi Process Work For The New MASLD Nomenclature?" and "S5 - E2.4 - MASLD Patient Advocates' Priority 2024 MASH Programs" from podcasts like ""Surfing the NASH Tsunami", "ITSPmagazine", "Xtalks Life Science Podcast", "Surfing the NASH Tsunami" and "Surfing the NASH Tsunami"" and more!

    Episodes (100)

    S5 - E5.2 - NITs In The Diagnosis and Treatment Of Advanced MASH Fibrosis Patients

    S5 - E5.2 - NITs In The Diagnosis and Treatment Of Advanced MASH Fibrosis Patients

    This conversation explores the challenges with using the current non-invasive tests (NITs) to diagnose patients with F2/F3 advanced MASH fibrosis. If tests today cannot achieve the requisite level of precision, panelists explore other ways to define patient targets.

    Roger Green starts by recalling that in a recent episode (Season 5 Episode 2), Jeff McIntyre suggested that in the US, the initial patient population may be as small as a few hundred thousand people. Ian Rowe states that current tools are incapable of placing these patients in a narrow diagnostic or therapeutic window. Jörn Schattenberg takes a "pragmatic" approach to defining the patient he is certain to treat; test results are a small part of his calculus.

    Naim Alkhouri shifts the discussion to focus on VCTE cutoff points for cirrhosis. The interplay between Naim and Ian suggests that different practices and guidelines carry with them different cutoffs. Jörn expresses gratitude that the can watch the US and learn from that experience. He notes the tension between wanting a cost-effective system and large numbers of patients clamoring for the new medicine. The need to rule some patients out is obvious, the way to do so is challenging.

    Asking, "What can we do besides scan" or use conventional tests, Naim discusses some newer options, starting with the metabolomics-based MASEF score discussed in Season 4 Episode 39. He also mentions the LiverFast test. Jörn describes factors that can render a test inappropriate for a particular patient. Louise suggests the right test will depend on the specific question the provider is trying to answer.

    The Power of AI, Patient Advocacy, and Innovation | A Conversation With Irma Rastigaeva and Evan Kirstel | Health Exposed Podcast With Tyler Cohen Wood

    The Power of AI, Patient Advocacy, and Innovation | A Conversation With Irma Rastigaeva and Evan Kirstel | Health Exposed Podcast With Tyler Cohen Wood

    Guests: 

    Irma Rastigaeva, Co-Founder & Chief Digital Storyteller for eViRa Health [@eViRaHealth]

    On Twitter | https://twitter.com/IrmaRaste

    On LinkedIn | https://www.linkedin.com/in/irmaraste/

    On Facebook | https://www.facebook.com/rastegayeva

    Evan Kirstel, Chief Digital Evangelist / Cofounder eVira Health and Top B2B Tech Influencer

    On Twitter | https://twitter.com/EvanKirstel

    On LinkedIn | https://www.linkedin.com/in/evankirstel/

    On Facebook | https://www.facebook.com/evan.kirstel

    _____________________________

    Host:  Tyler Cohen Wood, Host, Health Exposed Podcast

    On ITSPmagazine | https://itspmagazine.com/itspmagazine-podcast-radio-hosts/tyler-cohen-wood
    _____________________________

    This Episode’s Sponsors

    Are you interested in sponsoring an ITSPmagazine Channel?
    👉 https://www.itspmagazine.com/sponsor-the-itspmagazine-podcast-network

    _____________________________

    Episode Introduction

    Join us for Episode 2 of Health Exposed, where we'll explore how technology is transforming healthcare. Discover how AI and emerging technologies are revolutionizing patient care, including personalized treatments and early disease detection.

    We'll also discuss the catalytic impact of COVID-19 on telemedicine, the importance of wearable technology and exciting developments like non-invasive monitoring devices. Get a glimpse into the future of healthcare and don't miss out on this fascinating conversation with Irma Rastegayeva and Evan Kirstel, two of the world's foremost healthcare and technology leaders.
    _____________________________

    Resources

     

    _____________________________

    For more podcast stories from Health Exposed Podcast: 
    https://www.itspmagazine.com/health-exposed-podcast

    Watch the video version on-demand on YouTube: https://www.youtube.com/playlist?list=PLnYu0psdcllS4vbooAV3FGme1c369xYEg

    Are you interested in sponsoring an ITSPmagazine Channel?
    👉 https://www.itspmagazine.com/sponsor-the-itspmagazine-podcast-network

    Rare Disease Day 2024: Highlighting Patient Stories and Advancements in Rare Disease Research

    Rare Disease Day 2024: Highlighting Patient Stories and Advancements in Rare Disease Research

    In this episode, Ayesha talked about Rare Disease Day 2024, a global movement held on the last day of February each year that focuses on raising awareness about rare diseases including their impact on patients’ lives. This year, Rare Disease Day falls on February 29, the rarest day in a leap year, making it even more special.

    Ayesha spoke about how the Rare Disease Day campaign helps increase awareness about rare diseases, promotes research and development, supports advocacy for policies supporting patients and their families and brings together a global rare disease community.

    Advancements in rare disease research are leading to innovative new treatments for various rare conditions, including genetic disorders, which make up just over 70 percent of all rare diseases.

    Hear more about new rare disease drugs approved by the FDA in the past couple of years. Also hear about some of the latest trends in rare disease research, including innovative trial designs, patient-centric approaches, the use of cutting-edge technologies like AI and international collaborations.

    Read the full articles here:

    Rare Disease Day 2024: Highlighting Statistics and Patient Stories
    New Rare Disease Drugs and Research Advancements

    For more life science and medical device content, visit the Xtalks Vitals homepage.

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    S5 - E3.2 - How Did The Delphi Process Work For The New MASLD Nomenclature?

    S5 - E3.2 - How Did The Delphi Process Work For The New MASLD Nomenclature?

    This conversation focuses on the Delphi process for a new MASLD nomenclature. It starts with Jeff Lazarus describing what a Delphi process is and how it worked here. Jeff and two other key players in this process, Maru Rinella and Meena Bansal, describe what they consider some of its greatest strengths as well as one thing they wish had worked out better.

    Jeff's description focuses on the four rounds of data gathering and some key activities that transpired before the formal process began. He goes on to identify what he considers some of the pivotal outputs of this one. In particular, Jeff describes the focus on patients with alcohol and diet issues, and the naming of a new discreet disease for these patients (MetALD) as being “revolutionary.” 

    Roger Green agrees with Jeff's assessment that the naming of MetALD was an important outcome and that the process had clear benefits in this way. He goes on to ask why people opted out of the process. Maru Rinella comments that some people opted out after the third phase due to disagreements with the direction of the activity. Roger refines the question to ask why people opted out in the first place. Jeff and Maru note the amount of work required for this kind of activity, and he, Maru Rinella and Meena Bansal all describe that not all invitees understood how important this process would be upon first invitation. Jeff and Maru go on to mention that the participation rate was high, somewhere around 80%.

    Roger asks what could have gone better. Maru, Jeff and Meena Bansal each note groups for which they wish participation had been broader, including possibly a broader representation of stakeholders (notably, more patients, although Maru notes this was not for lack of trying) and more organizations or countries.

    S5 - E2.4 - MASLD Patient Advocates' Priority 2024 MASH Programs

    S5 - E2.4 - MASLD Patient Advocates' Priority 2024 MASH Programs

    Leading MASLD patient advocates Jeff McIntyre (Global Liver Institute), Milan Mishkovikj (European Liver Patients Association), Tony Villiotti (NASH kNOWledge) and Wayne Eskridge (Fatty Liver Foundation) describe their respective organizations' priority 2024 MASH programs to co-hosts Louise Campbell and Roger Green.

    In this conversation, the advocates each describe their respective organizations' top project for 2024. Wayne Eskridge goes first, describing the Fatty Liver Foundation's annual "flagship" study, The State of NAFLD and NASH Care in America. This study, which has been going on for "a few years," surveys patients' experiences around diagnosis and treatment of their SLDs. This year, which increased focus on non-invasive testing and the anticipated availability of a MASH drug, should yield particularly interesting results. Tony Villiotti talks about the extensive "liver awareness" education work NASH kNOWledge is conducting with over 250 schools and community centers in the Pittsburgh area. As part of NASH kNOWledge's ongoing effort to communicate to children on their own level, Tony anticipates his 10-year-old grandson accompanying the team this year, dressed in a "Livvy the Liver" costume. Milan Mishkovikj discusses a program where ELPA leadership conducts liver screenings at the European Parliament in Brussels, which provides opportunities not only to teach legislators and executives about their liver disease but also to learn their own liver health status. Jeff McIntyre discusses GLI's Advanced Advocacy Academy, or A3, a program to create and educate liver health advocates across the globe. To use Jeff's phrase, the program is starting to "grow roots" and become a self-sustaining year-round activity. Louise Campbell notes that the common theme in all four programs is that they are patient-focused, and most are children-focused. 

    Roger's final question is to ask what will constitute success for each organization over the next 12 months. The answers vary in specifics but carry the basic themes of education, access and drug approval common to the rest of the conversation. 

    S5 - E2.2 - After The First MASH Drug Approval, Focus Shifts To Patient Access

    S5 - E2.2 - After The First MASH Drug Approval, Focus Shifts To Patient Access

    Leading patient advocates Jeff McIntyre (Global Liver Institute), Milan Mishkovikj (European Liver Patients Association), Tony Villiotti (NASH kNOWledge) and Wayne Eskridge (Fatty Liver Foundation) join Louise Campbell and Roger Green to discuss what Jeff calls "the second half" - the hard work on coding and patient access that will follow the first MASH drug approval. 


    S5 - E2.1 - Expectations For The Resmetirom PDUFA Date - The First MASH Drug Approval?

    S5 - E2.1 - Expectations For The Resmetirom PDUFA Date - The First MASH Drug Approval?

    Leading patient advocates Jeff McIntyre (Global Liver Institute), Milan Mishkovikj (European Liver Patients Association), Tony Villiotti (NASH kNOWledge) and Wayne Eskridge (Fatty Liver Foundation) discuss their expectations for life after the resmetirom PDUFA data and, with it, the potential for the first MASH drug approval, with Louise Campbell and Roger Green. 

    The conversation starts with Roger noting a funny coincidence; the March 14 PDUFA data for resmetirom is Pi Day, which means the first MASH drug approval might come on the math geek's favorite day of the year. He asks panelists to describe their moods as they look forward to the event. All five other panelists Advocates describe their "guarded optimism" regarding whether resmetirom will be approved. Wayne Eskridge also notes the potential for confusion and disappointment because not every patient who anticipates receiving the new drug will do so. Louise Campbell and Milan Mishkovikj describe how US approval might affect their respective countries and regions. Going last, Jeff McIntyre describes the extensive planning GLI is doing to prepare for a PDUFA decision that might raise as many questions as it answers, particularly around coding, reimbursement and definition of appropriate patients. When he has finished discussing the questions we might all face arouind the initial FDA ruling on resmetirom, he goes on to describe a possible approval path for countries outside the US.

    S4 E50.2 - Wrapping Up 2023 - An Interview with Mike Betel and Tony Villiotti

    S4 E50.2 - Wrapping Up 2023 - An Interview with Mike Betel and Tony Villiotti

    Surfing the MASH Tsunami continues its 2023 wrap-up conversations with patients and patient advocates Mike Betel of the Fatty Liver Alliance (Canada) and Tony Villiotti of NASH kNOWledge (Pittsburgh, PA), along with co-hosts Jörn Schattenberg and Roger Green. The conversation focuses on viewing the year's major events and upcoming priorities from a patient advocate's point of view. 

    The conversation starts by looking at the roles that patient advocates in different countries have played in the global mix. The conversation starts by focusing on highlights and not-so-highlights of the year, with the first group including the return of face-to-face conferences with active patient involvement and education, the second group including the complete response letter for obeticholic acid and the new nomenclature seen as generally positive but somewhere in the middle.

    The conversation's first deep dive comes around the new nomenclature. Mike notes that this was an important initiative for every stakeholder in the MASLD/NAFLD community during the year. Tony describes himself as originally having been opposed because of all the re-work it will require for his organization and also because at a 1:1 level, it becomes hard to envision a physician explaining this disease to patients without raising the concept of "fat." They start by discussing liquid tests, but Mike then shifts to VCTE and the idea that Canadian patients wait six months for VCTE, which is not tenable in the long-run. Mike discusses having gone to the Canadian parliament this past spring and that he learned how little members know about MASLD. He sees increased meetings and conversations, particularly with patients telling their own stories, as critical to building government support. 

    In response to a question from Roger, both Tony and Mike consider the new nomenclature background noise that will not meaningfully affect how patients and their providers communicate. Jörn notes that in German, he cannot discuss metabolic disease or steatosis because they will mean nothing to the patient, so he uses the term "fat liver," which is the literal German translation. 

    The conversation shifts to the concept of "stigma", with Jórn starting by noting that the phrase "fat liver" has little stigma. Tony and Jörn agree that framing the issue properly can overcome any perceived stigma on the part of patients. The group agrees that it will take time for stakeholders to adopt the nomenclature, but, as Mike says, "it's here" and everyone will need to get used to it. 

    In response to a question from Roger, both Mike and Tony highlight increased use of and access to non-invasive testing (NITs) as a primary advocate goal for 2024.  They also discuss gaining access to VCTE on a timely basis. 

    Roger asks what listeners should consider about working more effectively with patient advocate groups. Mike starts by asking that manufacturers and sponsors bring patients into the clinical trial design process far earlier. He also notes that patient advocate groups need financial support from all sources including manufacturers, to support education. Tony mentions the importance of working with children, going into schools to educate children, and, through them, to reach the parents. 

    Advocates' hopes for 2024 start with the idea of resmetirom being approved. Mike looks to learn more about what primary care physicians in Canada are doing now and how he can motivate them to do more. Mike and Roger discuss strategies for working with industry.  Tony mentions the importance of motivating patients to seek their own care. The last comments are around the availability of multi-lingual materials in the two countries. 

    S4-E48.3 - Reviewing TLM 2023 Part One (cont.) – A Discussion with Michael Betel

    S4-E48.3 - Reviewing TLM 2023 Part One (cont.) – A Discussion with Michael Betel

    Fatty Liver Alliance President and Founder Mike Betel, a leading patient advocate for MASLD/MASH patients, joins Roger Green in our continuing review coverage of TLM 2023. Mr. Betel discusses presentations and events he found most valuable to patient advocates. He also discusses the new MASLD nomenclature and Fatty Liver Alliance's upcoming 2nd Annual Primary Care NAFLD & NASH Summit.

    The conversation starts with Mike paying the event a profound but slightly backhanded compliment. He comments that interest in some sessions was so strong that organizers did not leave sufficient space for everyone who wanted to attend. As he pointed out, even the "overflow rooms" were overflowing for some sessions! Mike then paid the event a profound complement: the content of the sessions, coupled with his ability to interact with Key Opinion Leaders, made for a meeting that provided him with insight and enthusiasm into where the field is heading. 

    Mike shifts focus slightly to praise Madrigal Pharmaceuticals for the Public Service Announcement the company premiered at this event. He describes himself as "blown away" by the 2:30 video. Mike notes, and Roger agrees,  that virtually everyone he spoke with at the conference who saw the PSA felt the same way. In response to Roger's question, Mike offers that what makes the PSA so special is that it focuses on "a real person and a real community interacting" in ways that portray real-life with humor and, at the same time, commitment. He mentions a couple of specific items he particularly likes and goes on to note that as of the end of conference, the video had already received 500,000 views online. 

    Mike goes on to discuss one scientific paper he found compelling, a presentation by Prof. Arun Sanyal about the Eli Lilly incretin triple-agonist retatrutide. He cites Arun's comment that in over 90% of the obese patients in this study, the drug reduced liver fat so much that patients' fat levels were defined as "normal." Roger goes on to note that there are three triple-agonists in development, the other two being Altimmune's pemvidutide and Merck/Hanmi's efinopegdutide.  

    Shifting focus, Mike congratulates Dr. Jeff Lazarus on being recognized with the Distinguished Scientific Award from the American Liver Foundation. jeff's work over his career has spanned major public health efforts in HIV, Hepatitis C, COVID-19 and Fatty Liver diseases, but his most recent effort was spearheading the Delphi process around the nomenclature change. Roger commends the work that Jeff, Ken Cusi and a few others have made in reaching across specialties and countries to foster and promote clinical care pathways. Mike commends a presentation by Jeff and Mazen Noureddin  talking about "a united voice for liver health." 

    Next, the conversation shifts to discuss the new nomenclature, which received significant attention at TLM 2023. Mike comments that while nomenclature is moving ahead, widespread change will hinge on endorsements from regulators, professional organizations and the pharmaceutical industry. Roger notes two specific steps forward: a comment from George Makar of FDA that the agency sees the terms of interchangeability and reports from Profs. Sanyal and Quentin Anstee that the old and new definitions map identically for 95-98% of patients. 

    The last part of the discussion focuses on Fatty Liver Alliance's upcoming primary care event. Mike discusses some highlights of the conference and tells listeners how to find it. The podcast ends with a call to action for community-wide engagement in liver health, underscoring the necessity for collaborative efforts to broaden the understanding of liver disease, enhance patient care, and adapt to the evolving medical landscape.

    Patient and Provider Perspectives: Opioid Use Disorder and Dependency

    Patient and Provider Perspectives: Opioid Use Disorder and Dependency

    In this episode, Michael Sprintz, DO, DFASAM, and Tia, a patient and advocate, talk about their experiences with opioid use disorder, pain, and the road to recovery. This podcast aims to differentiate opioid dependency from opioid use disorder, decrease the stigma of opioid misuse, and encourage those affected by it to seek treatment. The informative discussion includes first-hand perspectives of developing opioid dependency, a call to action for both healthcare professionals and patients to remember that addiction is a biological disorder and the importance of open communication to build a strong support system in the face of addiction. 

    Patient Voice: Navigating Pain Treatment

    Patient Voice: Navigating Pain Treatment

    Listen as Vanila Singh, MD, MACM, speaks with Maggie Buckley, a woman with Ehlers-Danlos syndrome and chronic pain, about her experience with pain therapies and different healthcare professionals over the years. They have an enlightening discussion about the challenges both patients and healthcare professionals face in optimizing pain management, with a poignant conversation about how stigma plays a role in pain medicine. They close by offering advice to fellow healthcare professionals and patients on how to approach pain management from both perspectives.

    Presenters:

    Vanila Singh, MD, MACM

    Clinical Associate Professor 
    Department of Anesthesiology, Peri-operative, and Pain Medicine
    Stanford School of Medicine
    Palo Alto, California
    Chairperson, Former Chief Medical Officer
    HHS Pain Management Pain Task Force
    US Department of Health and Human Services

    Maggie Buckley  

    This activity is supported by an independent educational grant from the Opioid Analgesic REMS Program Companies. Please see

    https://bit.ly/3mgrfb9 for a listing of REMS Program Companies. This activity is intended to be fully compliant with the Opioid Analgesic REMS education requirements issued by the FDA.

    Provided by Clinical Care Options, LLC and in partnership with the American Academy of Physical Medicine and Rehabilitation, Alliance to Advance Comprehensive Integrative Pain Management, Practicing Clinicians Exchange, and ProCE.

    Link to full program:

    https://bit.ly/3mcDHsi

     

    What’s the latest in Autoimmune Research and How can You Get Involved?

    What’s the latest in Autoimmune Research and How can You Get Involved?

    Episode summary

    Rheumatologist Dr. Buckner emphasizes the importance of early diagnosis and reassures patients that, although there might not be a cure yet, advancements in treatments have significantly improved the quality of life for individuals with autoimmune diseases. She highlights the crucial role of patients in research partnerships, where their input and participation are highly valued, leading to better understanding and management of these conditions.

    Dr. Mikacenic emphasizes the importance of viewing the patient-researcher relationship as a partnership. She discusses the potential benefits of participating in research studies, not only in drug trials but also through donating samples and providing clinical information.

    Both doctors express optimism about the future, believing that a cure for autoimmune diseases is possible with the rapid growth of knowledge about the immune system and targeted treatments on the horizon. They emphasize the significance of teamwork between patients, caregivers, and researchers, fostering hope and improving the lives of those affected by autoimmune conditions.

    Medical disclaimer:

    All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

    This episode is brought to you by:

    Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now at  https://arthritislifeschool.thinkific.com/

    For full details including a video and transcript:

    See the episode page on the Arthritis Life Website. 

    Advancements in Blood-Based Biomarker Tests for NASH — Interview with Dr. Tania Kamphaus and Tony Villiotti

    Advancements in Blood-Based Biomarker Tests for NASH — Interview with Dr. Tania Kamphaus and Tony Villiotti

    This episode features an interview with Dr. Tania Kamphaus and Tony Villiotti about new research on the utility and promise of blood-based biomarker tests for the diagnosis of liver diseases like non-alcoholic steatohepatitis (NASH).

    The research is particularly timely because the American Diabetes Association (ADA) recently called for liver disease screening for all adults with type 2 diabetes.

    The research, published in Nature Medicine, presents results from a study that evaluated blood-based biomarker tests for the diagnosis of NASH.

    The study’s co-author, Dr. Tania Kamphaus, Director of Translational Science, Metabolic Disorders, as well as Director of Patient Engagement, at the Foundation for the National Institutes of Health (FNIH), shared results from the study in this podcast episode. She discussed the potential of non-invasive tests to become the standard of care for liver disease diagnosis and the ongoing work her group is doing in this area.

    Tony Villiotti is the founder of the nonprofit, NASH Knowledge, and a patient whose NASH led to liver cancer and subsequent liver transplant. He spoke about the impact this research will have on the patient community. Tony believes that his liver cancer could have been prevented had a non-invasive test for NASH been available to him.

    Hear more about Dr. Kamphaus' group’s research in liver disease and Tony’s patient advocacy work to help improve awareness around NASH and help bring new diagnostics and treatments to light.

    For more life science and medical device content, visit the Xtalks Vitals homepage.

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    The Late Fee

    The Late Fee

    The healthcare system is often a source of frustration for many, with a lack of respect and transparency being at the forefront of these grievances. David Contorno and Emma Fox, two advocates for healthcare reform, share their perspectives on this issue. They express their frustration over doctors' overbooking, rising rates, and worsening benefits, attributing these issues to unrealistic productivity standards imposed by the systems doctors report to. They believe that this lack of respect for patients' time and the absence of transparency in pricing are driving doctors, especially primary care physicians, away from the traditional healthcare system. Contorno and Fox emphasize the importance of patients taking control of their healthcare decisions, encouraging them to ask questions, seek second opinions, and be informed consumers. Join David Contorno and Emma Fox as they delve deeper into these issues on this episode of The Healthcare Hangover podcast.

    Timestamped Outline:

    (00:04:10) Lack of Communication and Respect in Healthcare

    (00:07:49) The Burden of Healthcare Delays on Working Individuals

    (00:10:08) The Impact of Overbooking on Patient Care

    (00:16:13) Taking an active role in healthcare decisions.

    Social Posts:

    📢 "Have you ever waited for hours at a doctor's appointment without explanation or apology? 🤔 David and Emma share their frustration with the lack of communication and respect they experienced during a delayed appointment. Join the conversation on the impact of delayed appointments on patients' lives! 🏥 #HealthcareHangover #PatientExperience

    📢 New episode alert! 🎧 In this week's episode of #TheHealthcareHangover, David and Emma dive into the frustrations of healthcare delays and the impact on working individuals with inflexible schedules. 💼💔 Tune in to hear their thoughts on the financial implications and the disregard for humanity displayed by healthcare providers. Let's discuss the hypocrisy of the system! #HealthcareDelays #WorkingIndividuals #PatientAdvocacy

    📢 New episode alert! 🎧 Tune in to The Healthcare Hangover as hosts David Contorno and Emma Fox discuss the prevalent issue of overbooking in the healthcare system. Discover how this practice leads to long wait times, frustration for patients, and strains on doctors. Let's demand improved efficiency and communication! #HealthcareHangover #OverbookingIssues

    📢 "Advocating for yourself as a patient is crucial in healthcare decision-making. Doctors, despite their expertise, can be wrong due to various incentives. It's time to get sassy and talk about it! Join @HealthcareHangover as we discuss the importance of being an informed consumer. #PatientAdvocacy #HealthcareHangover

    Blog Post:

    Frustration Over Lack of Respect and Transparency in the Healthcare System

    In a recent episode of "The Healthcare Hangover" podcast, hosts David Contorno and Emma Fox expressed their frustration over the lack of respect and transparency in the healthcare system. They specifically highlighted the issue of delayed appointments and the hypocrisy of doctors charging fees for missed or late appointments while not valuing their patients' time. This issue is particularly burdensome for working individuals who cannot afford to lose wages due to long wait times and overbooking in the healthcare system. The lack of transparency in pricing and scheduling further exacerbates the problem.

    One of the key factors contributing to frustration in the healthcare system is the lack of communication and respect for patients' time. David and Emma shared their personal experiences of waiting for extended periods without any explanation or apology from the healthcare providers. They questioned why doctors' time is considered more valuable than their patients' time, especially when patients can also have high-paying jobs and lose significant amounts of money due to delays.

    The hosts also discussed the irrational pedestal on which doctors are often placed in society. They emphasized that doctors are human beings just like everyone else and should be held accountable for their actions and the way they treat their patients. They highlighted the importance of advocating for oneself in healthcare decisions and not blindly accepting the care provided by doctors. Patients should seek second opinions, question the care they receive, and understand the risks and side effects associated with their treatments.

    Another factor contributing to frustration is the lack of transparency in pricing and scheduling. Hospitals and healthcare providers often claim that publishing their pricing would be unfair competition or a burden. However, David and Emma pointed out that other industries, such as Amazon, can display pricing for millions of products that often change hourly. They argued that the excuses given by healthcare providers for not being transparent are simply a reflection of their lack of interest in serving the best interests of patients.

    The hosts also shared an example of a gynecologist who openly admitted to being overbooked and consistently running late. While they appreciated the doctor's transparency, they highlighted the systemic issues that lead to such situations. Doctors have control over the time they book patients and the amount of time they spend with each patient, yet they often fail to accurately estimate their schedules. This lack of timeliness and accuracy can cause frustration and inconvenience for patients.

    The impact of frustration over the lack of respect and transparency in the healthcare system goes beyond personal inconvenience. It can have serious consequences for individuals who cannot afford to take time off work or who rely on hourly wages. The financial burden of missed wages due to delayed appointments can affect their ability to afford necessary medications or even enjoy simple pleasures like going out to dinner with loved ones.

    In conclusion, frustration over the lack of respect and transparency in the healthcare system is a significant issue that needs to be addressed. Patients should not have to tolerate long wait times, lack of communication, and hidden pricing. It is crucial for individuals to advocate for themselves, seek second opinions, and question the care they receive. Healthcare providers need to prioritize respecting their patients' time and being transparent about pricing and scheduling. Only through open dialogue and a commitment to transparency can we hope to improve the healthcare system and provide better care for all.

    Episode Links

    Connect with Emma Fox

    Connect with David Contorno

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    HRT, Bioidenticals & Menopause: Benefits & Risks

    HRT, Bioidenticals & Menopause: Benefits & Risks

    Take a wild and science-heavy ride through the world of hormone replacement therapy for women during their perimenopausal and menopausal years. Join Dr. Stephanie as she navigates the hormone maze and deciphers the difference between HRT and BHRT, all while exploring the somewhat baffling history of medical misconceptions that have left us wondering if HRT might just stand for "Hilariously Risky Treatment." Whether you're craving the full “dark roast” of scientific details or just want a "TLDR" hormone summary, we've got you covered in this episode!

    Links Mentioned:

    Women’s Health Initiative - https://www.whi.org

    LIVE LONGER and Feel Better By Using These HEALTHY LIVING Tips | BETTER! with Ben Bikman - https://youtu.be/-4uAlbnP7lw?si=oEMsgyXBxnwpdR-K

    The SCIENCE Of How Fat ACTUALLY Works! | Dr. Benjamin Bikman - https://youtu.be/L17CyhJskNw?si=SmCZGZCxG-0F1xXb

    CDC Breast Cancer Statistics - https://www.cdc.gov/cancer/breast/statistics/index.htm

    Nurse’s Health Study - https://nurseshealthstudy.org

    Book: Estrogen Matters - https://estrogenmatters.com

    Lifetime Risk of Dying From Breast Cancer:
    https://www.cancer.org/cancer/risk-prevention/understanding-cancer-risk/lifetime-probability-of-developing-or-dying-from-cancer.html

    Lifetime Risk of Developing Breast Cancer
    https://www.breastcancer.org/facts-statistics

    Lifetime Risk of CVD Development:
    https://jamanetwork.com/journals/jama/fullarticle/1389613

    Estrogen only increases uterine cancer:
    https://pubmed.ncbi.nlm.nih.gov/1186789/

    Estrogen + Progesterone nulls uterine CA:
    https://pubmed.ncbi.nlm.nih.gov/3747849/

    Ridiculous scare tactic announcing halting of WHI:
    https://wayback.archive-it.org/org-350/20200921200315/https://www.nlm.nih.gov/databases/alerts/estrogen_progestin.html

    Atypical Femoral Fractures
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710007/

    Reduction of risk of fractures w estrogen use:
    https://pubmed.ncbi.nlm.nih.gov/7421945/

    Estrogen reducing colorectal CA:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3836673/

    Episode Overview:

    0:00:00 Skepticism around hormone replacement therapy and mistreatment of women

    0:05:08 Introduction to Menopause and Definition

    0:07:55 Estrogen Plummets in Menopause, Symptoms and Effects

    0:10:03 FSH Levels: Normal vs. Tighter Range

    0:13:50 Optimal Range for Free T4 and Free T3 in Menopause

    0:16:53 Estrogen and Cardiovascular Protection

    0:19:31 The Benefits and Misconceptions of Estrogen

    0:27:27 High Risk: Cardiovascular Disease vs Breast Cancer

    0:29:12 Estrogen and Breast Cancer: A Common Misconception

    0:29:36 Estrogen Environment and Breast Cancer Risk in Older Women

    0:34:15 WHI Study: Nutritional and Hormone Replacement Arms

    0:38:20 The Controversial Study and Rushed Press Release

    0:41:31 Understanding Bioidentical Hormones

    0:48:38 Calcium, Vitamin D, and Estrogen in Osteoporosis Treatment

    0:52:02 The Benefits of HRT for Bone Health

    1:02:10 Legal and medical disclaimer

    Navigating Challenges in Genomics and Patient Advocacy

    Navigating Challenges in Genomics and Patient Advocacy
    The Science & Technology Ethics Center (STEC) is proud to present a series of lectures and a panel discussion that explores the intersection of genomics, medical ethics, and patient rights. This thought-provoking session delves into the ethical considerations surrounding genetic testing, data privacy, and informed consent. It examines the challenges and opportunities presented by advancements in genomics and how they impact patient care. The panel will discuss the importance of advocating for patients' rights, ensuring equitable access to genetic information, and fostering a patient-centered approach in genomic medicine. Throughout this presentation, you will grasp a deeper understanding of the ethical complexities in genomics and the critical role of patient advocacy in shaping responsible and inclusive genomic practices. Series: "Exploring Ethics" [Health and Medicine] [Humanities] [Science] [Show ID: 38940]

    Navigating Challenges in Genomics and Patient Advocacy

    Navigating Challenges in Genomics and Patient Advocacy
    The Science & Technology Ethics Center (STEC) is proud to present a series of lectures and a panel discussion that explores the intersection of genomics, medical ethics, and patient rights. This thought-provoking session delves into the ethical considerations surrounding genetic testing, data privacy, and informed consent. It examines the challenges and opportunities presented by advancements in genomics and how they impact patient care. The panel will discuss the importance of advocating for patients' rights, ensuring equitable access to genetic information, and fostering a patient-centered approach in genomic medicine. Throughout this presentation, you will grasp a deeper understanding of the ethical complexities in genomics and the critical role of patient advocacy in shaping responsible and inclusive genomic practices. Series: "Exploring Ethics" [Health and Medicine] [Humanities] [Science] [Show ID: 38940]

    Navigating Challenges in Genomics and Patient Advocacy

    Navigating Challenges in Genomics and Patient Advocacy
    The Science & Technology Ethics Center (STEC) is proud to present a series of lectures and a panel discussion that explores the intersection of genomics, medical ethics, and patient rights. This thought-provoking session delves into the ethical considerations surrounding genetic testing, data privacy, and informed consent. It examines the challenges and opportunities presented by advancements in genomics and how they impact patient care. The panel will discuss the importance of advocating for patients' rights, ensuring equitable access to genetic information, and fostering a patient-centered approach in genomic medicine. Throughout this presentation, you will grasp a deeper understanding of the ethical complexities in genomics and the critical role of patient advocacy in shaping responsible and inclusive genomic practices. Series: "Exploring Ethics" [Health and Medicine] [Humanities] [Science] [Show ID: 38940]
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