Patient Advocacy and AI for Improved Medical Diagnosis - Episode Hero Image

Patient Advocacy and AI for Improved Medical Diagnosis

Original Title: 529: Are Your Symptoms Being Ignored? What Doctors Overlook and Why | Erin Nance, MD

TL;DR

  • Women are five to six times more likely to experience a misdiagnosis due to historical research biases and shorter appointment times, leading to pattern recognition failures in diagnosis.
  • Patients should trust their intuition and actively advocate by tracking symptoms and using social media for pattern recognition, not self-diagnosis, to inform doctor conversations.
  • AI tools like ChatGPT can aid research by suggesting differential diagnoses, empowering patients to conduct more targeted investigations and have more productive discussions with providers.
  • The healthcare system's focus on volume over accuracy, coupled with limited primary care appointment times, hinders thorough diagnosis and necessitates "North Star Providers" who are curious and collaborative.
  • Rare conditions are "rarely diagnosed" because they are not commonly encountered, highlighting the need for platforms that connect patient experiences with medical expertise to identify and treat less common ailments.
  • Systemic medical errors, such as wrong-sided surgeries, were significantly reduced by implementing universal checklists and timeouts, inspired by aviation safety protocols, demonstrating the impact of systemic process improvements.
  • Advancements in medicine, like limb-sparing surgery for osteosarcoma, show that scientific progress requires continuous questioning and research, underscoring the importance of investing in basic science to improve patient outcomes.

Deep Dive

The discussion begins by addressing the frustration of individuals who feel unwell but are told by medical professionals that their labs are normal and they are fine. Dr. Erin Nance emphasizes trusting one's gut, stating that the absence of a diagnosis does not mean the absence of a problem. She notes that the medical system often prioritizes volume over accuracy, with short appointment times hindering thorough evaluation.

The conversation then shifts to the historical lack of research on women in medical studies, which has led to a pattern recognition failure in diagnosing conditions. Dr. Nance explains that many recognized symptoms for diseases are based on male presentations, causing women's symptoms, which can differ, to be overlooked or mislabeled as "atypical." This bias extends to conditions like heart attacks and ADHD, where symptoms in women are often less recognized.

Consequently, women are significantly more likely to experience a misdiagnosis. Dr. Nance highlights that the ideal scenario involves connecting with a "curious" doctor who is willing to investigate further and collaborate with colleagues. These "north star providers" act as guides, a role that is becoming increasingly difficult to find as primary care as an industry declines.

To aid in this process, patients are encouraged to track their symptoms and become informed. Dr. Nance suggests using social media, not for self-diagnosis, but to recognize patterns in others' experiences and stories. She acknowledges the risk of misinformation online but points to platforms like TikTok as places where individuals share their health journeys, leading to moments of recognition for those experiencing similar issues.

Dr. Nance also discusses the development of her platform, "Feel Better," which aims to provide a trusted source of medical information from vetted experts, addressing the need for credible resources when immediate doctor access is not possible. The conversation touches on the use of AI, with Dr. Nance explaining how she advises patients to use tools like ChatGPT for differential diagnoses to guide further research.

The discussion then explores the concept of "disease origin story" versus "root cause," with Dr. Nance preferring the former to avoid the overused term "root cause." She uses the example of a yellow fingernail, explaining that identifying the specific fungus causing it is crucial for effective treatment, rather than merely describing the symptom.

The challenges of healthcare reimbursement and the out-of-network status of some physicians are examined. Dr. Nance explains how insurance companies' low reimbursement rates can make it economically unfeasible for doctors to be in-network, forcing them to either subsidize patient care or operate out of network, which can be prohibitively expensive for patients. She recounts her own experience of being unable to join insurance networks due to her solo practice status.

The conversation addresses iatrogenic harm, or harm caused by medical care. Dr. Nance references studies indicating that medical errors are a significant cause of morbidity and mortality. She differentiates between individual medical errors and systemic issues, citing the example of central line infections and wrong-sided surgeries, which led to the implementation of universal timeouts and checklists to improve patient safety.

The evolution of cancer care is brought up, with Dr. Nance noting how treatment protocols, such as starting chemotherapy before surgery for some breast cancers, are changing. She also highlights advancements in orthopedic surgery, like limb-sparing surgery for osteosarcoma, which has replaced amputations for many patients. This underscores the importance of ongoing research and questioning existing practices.

The topic of early menarche in girls is discussed, with the observation that it is occurring earlier. This phenomenon is linked to the resolution of undernutrition and the subsequent rise in obesity, as adipose tissue can produce estrogen. The politicization of health discussions is lamented, with examples of how accurate health information can be distorted or used for political purposes, hindering productive conversations.

Dr. Nance expresses optimism about AI's potential to aid diagnostics but emphasizes that physicians remain crucial gatekeepers. She notes that while AI can analyze scans, it cannot perform physical examinations or procedures. The conversation also touches on the potential for AI to improve efficiency in healthcare systems, but expresses a desire for a systemic evolution that allows for more patient-centered care.

The benefits of female physicians are considered, with studies showing better outcomes for female surgeons. Dr. Nance suggests that female patients may feel more comfortable with female doctors, though she acknowledges that not all female doctors are perfect diagnosticians and that she herself has made misdiagnoses. She shares a personal story of a complex case involving Ehlers-Danlos Syndrome that she initially missed.

The discussion delves into rare conditions, with Dr. Nance sharing a story of "slipping rib syndrome" diagnosed via social media. She reiterates that rare conditions are often rarely diagnosed and that social media can help connect individuals with similar experiences, leading them to seek proper medical evaluation. Autoimmune syndrome, where the gut microbiome produces ethanol, is also mentioned as a peculiar condition.

The overprescription of medication is presented as a problem stemming from a desire for fast solutions. Dr. Nance emphasizes that every drug has side effects and that reliance solely on pharmaceuticals is not ideal. She highlights the positive impact of GLP-1 medications for weight loss, noting that they can help destigmatize weight issues by offering a medical intervention rather than framing it as a moral failing.

Lifestyle factors are discussed, with reference to a longitudinal study on Native Hawaiians showing reduced chronic illness due to traditional, active lifestyles. The impact of ultra-processed foods and the importance of individual food choices are explored, acknowledging that economic factors can limit access to healthier options. Dr. Nance advocates for making the best available choices, even when convenience or cost are factors.

The role of animal-source foods in a healthy diet is defended, arguing against their demonization, especially in an era of high ultra-processed food consumption. Dr. Nance suggests that conventionally produced protein is a better choice than processed alternatives like boxed mac and cheese. She encourages focusing on the beneficial components of food rather than solely on calorie counts or avoiding "bad" ingredients.

Dr. Nance shares the personal motivation behind her book, "Little MisDiagnosed," which was inspired by her brother's paralyzing diving accident on her first day of medical school. This experience shaped her empathy and approach to patient care. She also addresses the underrepresentation of women in orthopedic surgery and her desire to empower women in male-dominated fields.

Her specialization in hand surgery is attributed to a childhood experience where an orthopedic surgeon left an opera to treat her broken arm, inspiring her to pursue a similar dedication to her craft. She mentions her own journey navigating the male-dominated field and her decision to speak out against misogyny later in her career.

Finally, Dr. Nance outlines her platforms for connection: TikTok (@littlemissdiagnosed), her podcast "The Medical Detectives," and the health social media platform "Feel Better." She defines living a genius life as sharing one's expertise.

Action Items

  • Track 5-10 personal symptoms daily for two weeks to identify patterns for doctor discussions.
  • Draft a concise medical history summary (max 2 pages) including all past diagnoses and treatments.
  • Identify 1-2 "North Star Provider" characteristics to seek in future medical consultations.
  • Research 3 common misdiagnosis patterns for conditions with sex-based symptom presentation differences.

Key Quotes

"there is no one who understands your body better than you and in most cases if you are having a significant change in your body right there's something you feel is not right and you are going doctor after doctor and they're telling you you're fine it's not that you're fine it's that they haven't found out what's wrong with you yet."

Dr. Nance emphasizes that patients should trust their intuition about their health. She explains that if multiple doctors dismiss concerns despite a patient's persistent feeling that something is wrong, it indicates a diagnostic challenge rather than the absence of a problem. This highlights the importance of patient self-advocacy.


"what has happened is that because of this lack of research for women particularly women uh women weren't even included in medical studies until 1993 so most of the symptoms that we recognize as part of a disease are based on male symptoms male presentation of symptoms."

Dr. Nance points out a historical bias in medical research, where studies predominantly featured male subjects. She explains that this has led to a common understanding of disease symptoms based on male presentations, potentially causing misdiagnoses or delayed diagnoses in women whose symptoms may differ. This underscores the need for more inclusive medical research.


"the best thing is to try and make a connection with a doctor who is curious okay they are curious about your case they may not have the answer but if they don't know the answer they're going to say you know what i have a colleague who is an endocrinologist i want to tap him in and see if we can figure this out together."

Dr. Nance suggests that patients should seek out doctors who exhibit curiosity and a willingness to collaborate. She describes these "north star providers" as those who, even without immediate answers, will actively seek input from colleagues to find solutions. This contrasts with a system that may simply refer patients without genuine engagement.


"people are sharing stories and it what comes to and when it comes to your health right they are sharing their symptoms their diagnosis treatment their providers all through these stories it's not to say that you are going to have the same problem as someone you saw on tiktok but for many people for the first time they go that's me that sounds exactly like me wild."

Dr. Nance advocates for using social media platforms like TikTok not for self-diagnosis, but for recognizing patterns in others' health experiences. She explains that the storytelling format allows individuals to connect with symptoms and conditions they might not have otherwise considered, potentially leading to a "that's me" realization. This can empower patients to have more informed conversations with their doctors.


"rare conditions are not rare they're just rarely diagnosed."

Dr. Nance asserts that many conditions considered rare are, in fact, common but frequently go undiagnosed. She uses the example of slipping rib syndrome, where individuals struggle to find medical professionals who can identify and treat their condition. This statement challenges the perception of rarity and emphasizes the diagnostic gaps in the medical system.


"the system is built for volume and not accuracy and so the original question you asked me you know how how can people actually get a diagnosis and it's really frustrating the best thing is to try and make a connection with a doctor who is curious."

Dr. Nance critiques the current healthcare system, stating it prioritizes patient throughput over diagnostic accuracy. She reiterates that finding a "curious" doctor, one who is genuinely invested in understanding a patient's case, is the most effective strategy for individuals facing diagnostic challenges within this system. This highlights a systemic issue impacting patient care.

Resources

External Resources

Books

  • "Little Miss Diagnosed" by Erin Nance, MD - Mentioned as the author's book detailing her journey and experiences in medicine.

Podcasts & Audio

  • The Medical Detectives Podcast - Mentioned as a patient storytelling platform for individuals who have been misdiagnosed.
  • The Genius Life - The podcast hosting this episode, with Max Lugavere as the host.

Websites & Online Resources

  • Feel Better - Described as a social media platform dedicated to health, featuring content from vetted medical experts.
  • maxlugavere.com/newsletter - Referenced as the location to subscribe to Max Lugavere's free weekly newsletter.
  • puori.com/MAX - Mentioned as a website for supplements, with a promo code for listeners.
  • LivOnLabs.com - Referenced for purchasing Lypo-Spheric Vitamin C and B Complex Plus, with a discount code.
  • oneskin.co/max - Mentioned as a skincare company website offering a discount code for listeners.

People

  • Erin Nance, MD - Orthopedic surgeon, author of "Little Miss Diagnosed," and creator of the Medical Detectives podcast and Feel Better platform.
  • Max Lugavere - Host of The Genius Life podcast and creator of a free newsletter.
  • Oliver - Founder of Puori, featured in a previous episode of The Genius Life.
  • Dr. Alexiades - Orthopedic surgeon who treated Max Lugavere's arm when he was seven years old.

Other Resources

  • AI (Artificial Intelligence) - Discussed as a tool for medical research and diagnostics, with potential for pattern recognition and information synthesis.
  • ChatGPT - Mentioned as an AI tool that can be used to generate differential diagnoses for symptom research.
  • OS-01 peptide - The key ingredient in OneSkin products, claimed to reverse signs of skin aging.
  • Liposomal delivery - A method of supplement delivery discussed for its absorption benefits.
  • GLP-1 drugs - Medications discussed in the context of weight loss and their impact on societal perceptions of weight.
  • Universal Timeout - A surgical checklist protocol adapted from the aviation industry to prevent medical errors.
  • Microplastics in the placenta - A health concern discussed in relation to research findings.
  • Ehlers-Danlos Syndrome - A genetic condition characterized by defective collagen, leading to joint hyperflexibility.
  • Slipping Rib Syndrome - A condition where a rib can displace and cause pain, discussed as a rare but treatable condition.
  • No Burp Syndrome (Retrocricopharyngeal Syndrome) - A condition affecting the esophagus that prevents burping, with available treatments.
  • Auto Brewery Syndrome - A condition where the gut microbiome produces ethanol, leading to intoxication.
  • SIBO (Small Intestinal Bacterial Overgrowth) - A condition related to bacterial overgrowth in the gut.
  • Horner Syndrome - A rare condition affecting the face, discussed in relation to migraines.
  • Osteosarcoma - A type of bone cancer, with advancements in treatment from amputation to limb-sparing surgery.
  • BRCA gene mutation - A genetic mutation associated with an increased risk of certain cancers, leading to preventative mastectomies.
  • Iatrogenic harm - Harm caused by medical examination or treatment.

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