The ShiftShapers Podcast

#517 Patient No More: Medical Harm, Misdiagnosis, and Taking Control with Helene M. Epstein

• David Saltzman • Episode 517

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Why Are We Paying More for Worse Health? | ShiftShapers

In this episode of ShiftShapers, host David A. Saltzman welcomes Helene M. Epstein—writer, speaker, and patient advocate behind the Substack series Patient No More. Helene dives deep into America’s epidemic of medical errors, misdiagnoses, and system failures. She breaks down why even the most advanced technology and training haven’t improved patient safety, how profit-driven healthcare puts patients at risk, and—most importantly—what individuals can do to protect themselves and their families.
From shocking statistics about misdiagnosis to the hidden realities of rural hospital closures, Helene provides practical advice and hope for patients who are ready to become their own advocates.

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🔑 Key Takeaways from This Episode

📌 Medical Harm Is Underreported and Overlooked
 One in four hospital patients is harmed—and most of those incidents aren’t even recorded. Medical error remains a massive, hidden problem.

📌 Diagnostic Error Is Common—and Dangerous
 5–25% of U.S. adults are misdiagnosed each year. The most common errors? Testing failures, insurance barriers, and lack of communication between patients and providers.

📌 The System Is Built for Billing, Not Healing
 EMRs, insurance company rules, and corporate healthcare ownership have prioritized profits and paperwork over patients—leaving safety and transparency behind.

📌 Rural and Marginalized Patients Are at Greater Risk
 Access to care is shrinking as hospitals close pediatric and maternal units, especially in rural and underserved communities.

📌 Patient Advocacy Is Rising
 Helene shares why empowered patients—armed with information, organized records, and second opinions—are the best defense against medical error.

📌 Practical Steps: Protect Yourself
 Keep copies of your records, use health portals, seek second opinions, and research providers before major procedures. Being “patient no more” means taking an active role in your own care.

More from Helene M. Epstein

Patient No More is a free Substack by patient advocate Helene M. Epstein, offering practical advice to help you avoid misdiagnosis and medical error. Read her ongoing guide to surviving American healthcare at https://helenemepstein.substack.com/



⏱️ In This Episode

  • 00:00 – Why Does U.S. Healthcare Cost So Much and Deliver So Little?\
  • 01:00 – What Counts as Medical Error and Harm?
  • 03:00 – The Impact on America’s Workforce
  • 04:30 – Corporatization and the Decline of Access
  • 07:45 – The Prevalence of Diagnostic Errors
  • 10:00 – The Role of Insurance in Delaying Proper Treatment
  • 12:00 – Medication Errors, Pharmacy Mistakes, and Communication Gaps
  • 15:00 – Why Electronic Medical Records Don’t Fix the Problem
  • 18:30 – Patient Advocacy, “Patient No More,” and Surviving American Healthcare
  • 21:00 – Misdiagnosis in Women, Children, and Marginalized Groups
  • 24:30 – The Future of Patient Safety and System Reform

Speaker 1:

It's a widely acknowledged fact that in the United States, we spend more on health care than other countries, but our metrics and our results are worse. They're much worse, and our life expectancies are getting shorter. So why in the hell are we spending so much and getting so little? What are the root causes? We'll find out on this episode of Shift Shapers.

Speaker 2:

Change either energizes or paralyzes. The choice is yours. This is the Shift Shapers podcast, bringing the employee benefits industry interviews with individuals and companies who are shaping the industry shifts. And now here's your host, david Saltzman.

Speaker 1:

To help us answer that question. We've invited Helene M Epstein, writer, speaker and advocate, who is investigating that in her terrific and very informative. If you haven't signed up for it, you should. New Substack series Patient no More. Welcome, helene. Thank you, david, happy to be here. It's our pleasure. Let's start a little bit and we'll go right to Chapter 1. In Chapter 1, you talk about errors and harms. What are errors and harms and kind of? How do they manifest?

Speaker 3:

So medical errors let's be specific or patient harm, those are two different elements. Specific or patient harm, those are two different elements. Medical errors are every single mistake that's made in a hospital, in a nursing home, in your primary care doctor's office, in the specialist's office. It's every mistake that's made in surgery. Patient harm is what happens when those mistakes are made and there's a gap between measurement of medical error and patient harm because hospitals don't track it properly.

Speaker 1:

So could you give us a couple of examples, just top level, and then we'll deep dive on them, one at a time, sure.

Speaker 3:

The number one cause of medical error is diagnostic error, or misdiagnosis of it's commonly called it's across every medical malpractice metric, across every hospital's risk management department. That is the issue that they have to deal with the most, but it's probably not the biggest issue. That's really happening because hospitals are not properly tracking the medical issue. That's really happening Because hospitals are not properly tracking the medical error that is happening. They're not even aware of how big this issue is.

Speaker 1:

That's interesting, you know, for our audience, who are largely client-facing advisors. How does this have? What impact does this have on the workforce?

Speaker 3:

So we know that an adult employee with an illness is the rule. It's not the exception. 60% of American adults have at least one chronic illness. 40% of them have two or more. You add in the 50 million people who have autoimmune illnesses and you have a workforce that is constantly dealing with trying to get diagnosed, trying to get proper treatment and trying to survive the eight to 10 hours that they're supposed to be surviving in your office. Absenteeism is growing. It's not decreasing. Error and medical error have stayed exactly the same for 20 years and are possibly getting worse as our system gets more focused on profit and not on the patient.

Speaker 1:

It's not hard to imagine that our system is more focused on profit. It is hard to imagine that, with all of the technology and all of the training and the vast amounts of resources, both financial and educational and otherwise, that we spend, that that's continuing to happen. And this is not a new phenomenon, is it?

Speaker 3:

No, it's not a new phenomenon. Look, the corporatization of health care goes back to the beginning of insurance companies making it difficult for primary care doctors to get approval and for specialists and surgeons to get approval, and we can talk about the history of that for a while. What's gotten worse is that we now have financial firms, health equity firms, that are buying up hospitals in rural areas or community hospitals, and then they're closing pediatrics, they're closing maternal health, you know actually labor and delivery, because those are the least profitable. So there are people in our country, quite a few, who have to travel over six hours if their child gets sick, if a pregnant woman needs some sort of help. That's what the helicopters, I guess, are for, but the access to care is just falling apart in the country.

Speaker 1:

And yet getting a certificate of need has become almost impossible. So we're not seeing new hospitals or facilities being built in rural areas and, heaven forbid, we're not seeing any specialty hospitals being built. How does that make any kind of sense? Wouldn't if we were corporatizing stuff? We would want to draw more patients, wouldn't we?

Speaker 3:

Well, I guess the issue across the board for all the investors in health care, as well as for health insurance companies, is short-term thinking, and it's been a problem in this country for a long time. We live quarter by quarter, we don't live decade by decade, and that's where we get beat by other countries that have much stronger public health systems, or even, you know, the communist countries or the socialist countries that we look down on. They're thinking decade by decade and they're thinking prevention more than we are.

Speaker 1:

Yeah, and that's always been a particularly and peculiarly American trait. And now a word from our sponsor. You're not just an advisor, you're a game changer. Forget cookie-cutter off-the-shelf solutions. That's yesterday's news, it's 2025, and it's all about delivering bold, custom-crafted plans that truly make a difference. At the core is a razor-sharp self-insured framework, but the real magic that's in the high-impact point solutions. You strategically layer in to slash costs and supercharge member outcomes. But let's be real, that's where the headaches start Hours wasted sifting through endless options, wrestling with integration issues and fighting data-sharing roadblocks. It's a time suck and it's holding you back. Not anymore.

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Speaker 3:

So diagnostic error there is not a person listening to this podcast that will not experience it at least once in their lifetime, and you will most definitely experience it in your immediate family. So we know that anywhere from 5 to 25% of American adults that's 12 to 40 million are going to be misdiagnosed every single year in this country. A third of those are harmed greatly. So diagnostic error or misdiagnosis, it's common, it's costly and it's catastrophic. So it happens everywhere. It happens just going to your primary care doctor. 70% of diagnosis errors are due to testing errors and I just dropped a chapter about that.

Speaker 1:

Can you give us an example?

Speaker 3:

So if you think of testing as a relay race, where you go from the very beginning, from providing the sample, you have to go to the lab, that lab sample has to be properly handled, it has to go to the laboratory where it's going to be taken care of or just fucking blood sample, for example and then it has to be processed correctly, the results have to be communicated correctly and they have to get back to you. But let's start even a step earlier than that. The doctor has to order the right test. They have to know which test to order, and sometimes that decision is not made by the doctor, it's made by the insurance company. Insurance companies are gating expensive tests.

Speaker 3:

Here's a perfect example, and I hope you have this gentleman on your podcast soon. His name is Matthew Zachary. He is a cancer patient advocate, one of the things that we know and, by the way, my husband's in precision medicine. So I'm getting this from two different directions. We have the ability to do genetic testing on patients to identify what type of cancer they have and to identify what specific treatment will be best for that cancer and for that patient's body. But uniformly, routinely, insurance companies don't pay for the genetic tests, which can be expensive and they don't permit the identified treatment plan to be used first. They want some standardized treatment to be used first, so patients become more ill and they metastasize. So this is a battle that patients and patient groups from all over the country are having with insurance companies right now, and since cancer affects so many of us, it's going to affect the people who are listening to this podcast as well personally, as well as their family members the people who are listening to this podcast as well, personally, as well as their family members.

Speaker 1:

Even though the cost of pharmacogenetic testing has come down, I would say dramatically I mean, you can get a really, really broad assay for under 200 bucks. It's not widely available to people, right, you know you have to kind of ferret it out, but it would seem to me that we waste more money, or insurance companies waste more money, on incorrect tests and then medications which we'll talk about next than $200. It would seem least expensive I've seen for a complete genetic workup is $1,200.

Speaker 3:

But the genetic workup for cancer is very specialized and you're talking about genetic typing, so that's a lot more expensive because it's harder to do.

Speaker 1:

So we touched on this kind of briefly. Let's talk a little bit about medication errors. We spend a lot of time on the podcast talking about pharmacy because it's one of the biggest cost drivers and it's also been a litigation driver in the last 12 or 18 months, starting with the johnson and johnson suit, which has now gone its own way for a variety of reasons. But there are medication errors that are endemic to the system. What's the scope of that and what can be done about it?

Speaker 3:

Well, again, we have to start with the doctor. So there are new medications coming out all the time and there are salespeople that are going to the doctors trying to sell them on it and giving them samples. But doctors are not pharmacists. They're not experts on the contraindications of medications. They're not experts on which medication should not be taken with other medications. We use the pharmacy as the first line of defense for that. But pharmacies make mistakes all the time.

Speaker 3:

I'll tell you a funny one that happened to me was I went to go pick up birth control pills a few years ago and got someone's heart medicine and the guy who needed the heart medicine got my birth control pills. That's a very simple error that happens frequently on the retail side. Medications that patients should be taking for two weeks. Let's say you have GERD or you have IBS, you have some sort of digestive issue that's affecting your esophagus and giving you chest pain. They're supposed to be taken for two weeks and for most patients it affects their bones. As you age your bones get softer faster, bone density decreases and I can tell you just of people I know in my own telephone book at least the 40 people who have been taking it for two years or more. So if something works, you take it. Patients also can't afford their medications, and one of the biggest medication errors are when patients try to take it only when they feel bad for preventative medicine or an asthma medicine, or they try to decide do I buy this medicine or am I buying food this week? And they don't tell the doctor and they don't tell the doctor. The other big issue and this affects testing as well are supplements.

Speaker 3:

So I tell the story of my father-in-law, who was on blood thinners for heart condition and they test every two or three weeks something called the INR. It's a measure of how your blood is clotting and he could not get his INR under control. The doctor was trying to figure out like why, why, what, what are you eating, what are you doing? And what my father-in-law never told him was that he was taking ginkgo biloba because it's supposed to help with memory. But ginkgo biloba is a blood thinner that's how it helps with memory. And so one day, as my father-in-law accidentally cuts himself and turns to me and squirts me in the face with blood that's just pumping out of his heart, I said you've got to tell your doctor about the ginkgo biloba, please, and then you can get your INR under control. So these are the kinds of errors that we make because we don't communicate. The doctors don't tell us what we need to know. We don't tell them what we're actually doing.

Speaker 1:

Well, I mean, we're fractured and every attempt has been made you mentioned denying consultations and whatnot earlier on but pretty much every attempt has been made at doing away with the concept of medical home. That said, it's 2025. We don't have electronic medical records yet where you know your new doctor can look at your old records and see what it is you've been prescribed and what you're taking. I mean, I recently had a similar experience. I went to a new doc and the answer was okay, we're going to do this blood panel and that blood panel and the other blood panel. I said, well, I just had those done two weeks ago. Well, we don't have access to those results. I said, well, maybe you don't, but I do. Can I get them for you? We need to do our own tests and I walk out the door, but most patients don't do that. So it's a combination of the two, isn't it? You're kind of getting a double whammy.

Speaker 3:

Well, absolutely. First of all, let's talk about the EMR. It was not designed for patient diagnosis and treatment. It was designed for billing. That's really the truth.

Speaker 3:

Everything in this industry has been designed for billing and it's almost impossible to be able to utilize the EMR properly for diagnosis and treatment. They're difficult, they're unwieldy. People are trying to work with them, but they end up copying and pasting information that's often incorrect into the new record, so that for every patient visit, the list of issues gets longer and longer, even though the patient might have been there for one simple problem. The other issue is that the company that I won't name here that runs most of the electronic medical records for most of the hospitals they're the big player in the system. They have been buying up companies that have worked hard to improve the product, maybe using AI to make it easier to identify the issues that you need, or for interoperability, so two hospitals can work together on the same patient that perhaps had an accident and is traveling and needs to go to a hospital in a different state. They have bought those companies and then they've squashed the technology. We have lots and lots of stories about that.

Speaker 1:

How do we solve that problem?

Speaker 3:

There's a lot of people working on it.

Speaker 3:

There's a lot of people working on it, and I would say that the big issue we have right now, in 2025, is that fewer people are getting to work on it because their funding has been cut.

Speaker 3:

No matter where you stand on politics, public health affects every single one of us, and when we kill the type of cutting-edge medical research that used to be done in this country and that is no longer properly funded, or the attacks on universities, again it's not a political thing for me, it's a healthcare problem. So patients are the ones who are going to suffer, and your clients' employees are the people who are going to suffer the most. However, and while we are trying to work that out, and while there are people who are working on things like bringing more diagnostic AI to work year, I'm dropping two chapters a month, which is kind talks in general about the issue by the end of December. So it's a full book that will take you from identifying that you have a problem to getting heard, getting solved, getting treated and surviving, and the book is called A Guide to Surviving American Healthcare Patient. No More is where I'm posting it.

Speaker 1:

It's, you know, longtime listeners of the podcast will know that I've said this more than once. The best thing I ever heard out of a physician's mouth was that patients would get doctors would get off their pedestals. When patients get off their knees, it's a great line.

Speaker 3:

It's a great line.

Speaker 1:

And so, since you kind of detoured us there, what are some of the things, maybe the top two, three or four things that patients can do and should be doing?

Speaker 3:

They have to keep control of their records. I recommend everybody join every portal for every doctor and if you can get them onto my chart, then they can talk to each other, because you can give permission for every doctor to see everything else that's happening through my chart. So that's one thing people can do. The second thing that people can do is don't have any surgery, Don't do any invasive or expensive tests without first going for a second opinion. In fact, I have a chapter coming up called Get a Second Opinion. Get a Second Opinion. Get a Second Opinion because I cannot believe how many people jump into a surgery and haven't double-checked that the diagnosis is correct, and that is a gigantic. Well, how many diagnoses are?

Speaker 1:

wrong. You write about that even in chapter one. How often do they just get diagnoses flat wrong?

Speaker 3:

Oh well, for at least 10 to 20% of Americans every single year. So that is, 24 to 50 million Americans are misdiagnosed every single year, and sometimes the diagnosis is close, like they might be 100% correct it's cardiological but they don't have the right issue. Most of the time, though, what happens to patients is that they get dismissed. They get ignored. There are people in Facebook groups who are undiagnosed and suffering and are not going to see doctors anymore because they have been dismissed and ignored so many times. So we're talking specifically about women with endometriosis. We're talking about people with ME, cfs or long COVID as well people with Lyme disease, people with autoimmune diseases of all kinds. They have checked out of the system, but they're employees. They're working full-time for companies like your clients.

Speaker 1:

I have a daughter who's well into her 30s who was diagnosed with endometriosis when she was 18. And it's only because both she and her mother were a giant pain in the ass to the medical system that she got the diagnosis. And the stories that she tells about just being summarily dismissed by doctors are frightening, and I know that that happens to women with lots of other diagnoses as well. Are you seeing that in your research more prevalent with women than with men, or is it just pretty much across the board?

Speaker 3:

You know, even white men 21 to 45 get misdiagnosed. But yes, if you have an accent, if English is your second language, if you're a woman, if you're a senior, 4 million children are misdiagnosed. It's a working, it's a rough number, but it's actually 4 to 8 million. But, to be conservative, 4 million children in this country are misdiagnosed every year. And for children it is much, much worse than it is for adults, because they have developing bodies, because they're developing their brains and their systems and their immune system, and when that gets interrupted you have immediate chronic illness. So that's a gigantic problem.

Speaker 3:

And if you're Black, forget it. If you're a Black woman, the chances of you being properly diagnosed are lower than they are for almost any other group. And then, of course, we have maternal health issues, the fact that if you are Black or Hispanic, you have a chance of dying four times higher than a white woman does. But even white women who are giving birth are harmed more in this country than they are in any other country, any other developed country, any other wealthy country in the world and the other developed country and the other wealthy country in the world.

Speaker 1:

And I want to be clear none of what you just said because I've done some research as well none of what you just said is political. It's all borne out by actual real-life numbers of actual real-life patients who've been harmed. Yeah, it's facts.

Speaker 3:

And it's not because any doctor starts out wanting to cause harm. I'm not doctor bashing here, because most doctors do it for the very simple reason that they want to help people. There is a very tiny percentage of doctors that are responsible for a majority of the medical malpractice lawsuits. 89% of doctors have never been sued Never. That means 11% have, and two of that 11% are responsible for more than half. So one of the issues that we have is that the state medical boards are not quick enough to identify the bad players and even if they remove their license in their state, that doctor can go to another state that he's already licensed in or she's already licensed in and they jump around. So I do give advice about before you choose a doctor. There are tools, there are places that you can go to look up their background and see if they were ever sued, and if they were sued once in a career that's 40 years, don't worry about it. But if they were sued multiple times and recently, stay far, far away.

Speaker 1:

We've got a couple of minutes left. Where do you see this going in the near term, let's say, the next four or five years?

Speaker 3:

going in the near term, let's say, the next four or five years. I think that patients have been activated and so the patient advocacy world is growing and getting stronger, and even with Maha, they're listening to patients more than they're listening to doctors and researchers. So I think that is going to be our pathway to improving healthcare. But the big issue is always going to be about the profitability. States need to be on top of what's happening in their hospitals, because that's where a lot of the certification happens. There are three certification groups for hospitals, and I hope that we can get them to step up and identify diagnostic error and medical error as a certification problem. And the third avenue that the patients are looking at and patient advocates specifically are looking at, are medical malpractice insurers, because they're the ones who have to pay out when something goes wrong. And patient advocates specifically are looking at Our medical malpractice insurers because they're the ones who have to pay out when something goes wrong, so they can make requirements that their hospitals, if they want to be insured, have to meet certain patient safety reporting standards.

Speaker 3:

I'm just going to say one more thought quickly. One out of four people in the hospitals, people who are in the hospital, are harmed One out of four and we only know that from voluntary reporting of the harm is not reported because it's not identified, because it's not found. The system doesn't get and that's what the report's going to come out. There's a report coming out this year, late in the year, that's going to say that we are missing 95 percent of harm that is happening in hospital. So if we can get the medical malpractice companies and the hospital certification companies to join with us to require mandatory patient safety reporting, we can solve a lot of these problems very quickly and AI would help.

Speaker 1:

And that's a great place to end our conversation, but we do hope you'll come back as this all expands and goes on and whatnot. Helene M Epstein, writer, speaker, advocate, and please, if you want to know more about this and you should, because it will help you inform your clients and make better decisions, especially in the self-funded universe where you're selecting vendors to help build a plan from the ground up please subscribe to her Substack series. It's called Patient no More. Helene, thanks so much for spending some time with us.

Speaker 3:

Thank you. I think you and I could talk all day. We probably will one day.

Speaker 1:

I want to give a quick shout out to our sponsor and our producer, hatcher Media. Hey, if you need podcast production or professional graphic design, josh Hatcher is the expert to contact For more information. Visit him at HatcherMedianet. That's H-A-T-C-H-E-R-Medianet.

Speaker 2:

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