Approximately 795,000 Americans suffer permanent disability or death due to diagnostic errors annually, highlighting the urgency of this public health issue.

"Using novel methods, a team from the Johns Hopkins Armstrong Institute Center for Diagnostic Excellence and partners from the Risk Management Foundation of the Harvard Medical Institutions sought to derive what is believed to be the first rigorous national estimate of permanent disability and death from diagnostic error.  

The original research article was published July 17 by BMJ Quality & Safety. Results of the new analysis of national data found that across all clinical settings, including hospital and clinic-based care, an estimated 795,000 Americans die or are permanently disabled by diagnostic error each year, confirming the pressing nature of the public health problem." 

https://www.hopkinsmedicine.org/news/newsroom/news-releases/2023/07/report-highlights-public-health-impact-of-serious-harms-from-diagnostic-error-in-us#:~:text=Results%20of%20the%20new%20analysis,of%20the%20public%20health%20problem.

Transcript:

Heather Young, C-IAYT, CPT, RTY 500: Yes, and then you have the women on the other side of the coin who have delayed care or incorrect care because they've been met with silence or they themselves have been silent. They've been unable to speak up and advocate for themselves.

Jennifer Klotz, MS, RDN, LDN: Exactly. It's hard to advocate for yourself. It is. It's hard to speak up when you feel like you're not supposed to. And that's what we want you to learn from today's conversation, which is five simple ways you can advocate for yourself and get better care when you go see the doctor or any health professional, especially in a setting where the appointment is, you know, 20 minutes or less, because that is the barrier here. Time is a barrier for getting good care and That's why you want to go in with a plan. And we hope to empower you today with a plan of action for if you do need to go see a health care professional or a doctor, that you start to get good care from that experience because you're going in prepared.

Heather Young, C-IAYT, CPT, RTY 500: Yes. And this idea of better advocating for yourself, it's based on our professional experience, but it's also based on our personal experience, both with us and with our families. And between the two of us and many of our clients, we have seen over and over and over again that the care you can receive can be lacking or can delay health or delay healing. And although it's a nuanced conversation, there's a lot of layers here, we're really zooming in on what you can do to improve good care and what you can do to stack the odds in your favor to walk out supported and having what you need. Now, I do want to note, we do have this all in a PDF that you can download from this episode, especially if you're a visual person. But it's very comprehensive and it's going to empower you to advocate for yourself. So if this is resonating with you and you feel like it can help you on your health journey, you can go grab that at the website on the podcast page.

Jennifer Klotz, MS, RDN, LDN: So why does this conversation matter? And why are we starting with it this season? And simply put, dismissive care kills. And we have seen it, sadly, take people we love, because they didn't know how to advocate for themselves, but people we also work with, and knowing that they were not getting the good care that they could have been getting, because they just didn't quite know how to speak up for themselves, or to say, I'm going to fire you. I'm going to move on, because I don't see any forward progress. And while that's scary to say out loud, It's important to know because good care heals. Good care takes care of you. Good care prevents chronic conditions. Good care does not harm, and good care does not kill. And that's what we want you to take from this conversation, which is good care can change everything.

Heather Young, C-IAYT, CPT, RTY 500: Point number one that starts this all off on a solid foundation is you need to write down your concerns, your questions, your symptoms, and your goals ahead of time. Because especially in those quick appointments, it's easy for things to get missed. And this- And when you get nervous.

Jennifer Klotz, MS, RDN, LDN: Yeah. I mean, it's amazing. You get medical Dr. Brain. You walk out and go, Wait, did I ask that? And typically you didn't because you just got flustered.

Heather Young, C-IAYT, CPT, RTY 500: Yes. So it is critical to have that list because one, if you have your goal written down, you're not going to get off track where accidentally you end up somewhere that isn't even addressing what you originally… What you went in there for, which also happens.

Jennifer Klotz, MS, RDN, LDN: Very much so.

Heather Young, C-IAYT, CPT, RTY 500: So the goal in front of you, so you can revisit it, check on it, is clear. But then you want to write down your symptoms too, because I know this from my own personal journey. You're like, I'll remember them all. I'll talk about them. And you absolutely do not. And it's not that you want to have a laundry list. It's that you want to just be clear as to what you're experiencing before you go to the doctor's office. Because getting those symptoms right and giving your doctor a clear picture of what's going on is really important.

Jennifer Klotz, MS, RDN, LDN: Yeah, because the misdiagnosis happens when there is not clarity between conditions that mimic each other. But more importantly, you want to write down these things because, you know, a GP is not necessarily who you need, depending on what's going on with you. And so you want to give them all the needed information so that they also know, oh, you know what? You need a referral. I can't even help you with this. These symptoms, they're 100% digestive based. It seems like a lot of them, they do seem concerning. You need to go see a GI specialist. And look, the nuance in this conversation is there's plenty of people who argue that we shouldn't be specializing. We shouldn't be breaking off health care the way that we have because that also plays into people not getting quality care. But this is currently how the system is set up. And so you want to be working with the system, not against it.

Heather Young, C-IAYT, CPT, RTY 500: Yes. And you can easily get frustrated when they're like, okay, you're going to a specialist. But I have to tell you, big reframe, you want to go to the person and follow all of those threads to get you to the right diagnosis. Because big study came out last year, 795,000 Americans either die or are disabled from being diagnosed with the wrong condition. That makes it a leading health concern. And this right here, this foundational place is where it starts. Did you get them your list of symptoms? Were you willing to go to a specialist potentially who might be more familiar with the different nuances of health conditions? And from there, it gets you moving forward on the right path.

Jennifer Klotz, MS, RDN, LDN: That said, this leads into our second point that we think is really key to advocate for yourself. This one's a tough one for a lot of people to swallow, but we consider it pretty essential, which is you need to get a second opinion. It's true. It legitimately could save your life. Not only from that stat, which is misdiagnosis and second opinion, clarifies whether or not you are even on the right track because scarily enough, 58% of patients will receive a different diagnosis upon getting a second opinion.

Heather Young, C-IAYT, CPT, RTY 500: Yeah, even Mayo Clinic, when it ran its own study, it was even higher. It can be worse. It can be 80. 88% of patients who came into the clinic for a second opinion either had their diagnosis changed or moderately altered, which is pretty significant.

Jennifer Klotz, MS, RDN, LDN: And we've experienced this with our clients and even with our dad, right? If we hadn't been actively using what we think is advocacy, he would have gone even longer without getting the appropriate diagnosis. Because for clarity here, he was diagnosed with sciatica and he had cancer.

Heather Young, C-IAYT, CPT, RTY 500: Yeah. It wasn't that the nerve was irritated in his leg, it was that a tumor was pressing on the nerve and cutting off his leg. And that's something where the second opinion and digging deeper.

Jennifer Klotz, MS, RDN, LDN: It's valuable. Yeah. can save your life. It's money well spent. Because it is money. It is time. From working with as many people as I have at this point, My impression is not only is it money, and again, I understand that. It is always difficult when you are on a tight budget, we even know this, to say, okay, I'm now going to spend another X amount of dollars on another doctor. But the fact of the matter is you are going to end up spending more money in the long run if you have not been appropriately cared for. So you're actually saving money in the long run, not only that, but also potentially saving your life.

Heather Young, C-IAYT, CPT, RTY 500: Yeah. You have a fun way to say it.

Jennifer Klotz, MS, RDN, LDN: No tooey, no dewey. And legit, I wish I had gotten a second opinion on my wisdom teeth removal. My life would be completely different. And so, wow, I understand that some people are still never going to get a second opinion. I absolutely am never going to change my mind on this because not only from my personal experience and having to live through that and just knowing that it could have been different.

Heather Young, C-IAYT, CPT, RTY 500: Yeah, I know. The emotion that comes from it, and that's what you need to hear. You don't want regret. You don't want regret where you wish you had slowed down or you wish you'd gotten a second opinion. There's real damage that can happen and it gets painted over or glossed over in the rush of the doctor's office. However, giving the space and the time to get a second opinion gives you exactly that space and time to sit with something. And as Jen was just explaining, there's a still small voice, it gets confirmed or not confirmed by that second opinion, and you will never ever regret doing it. You will only ever regret not doing it. Not doing it. Yes. Absolutely. If there's one thing, I'll probably say that over and over, but if there's one thing you walk away with, we really hope it's this reinforced commitment to yourself and to the value of your lived experience and the value of getting the right diagnosis and the right treatment. that you take the time, make the effort to get that second opinion. Now, here's a way that makes it a little easier because when you're dealing with chronic conditions or chronic illness, you do not feel well. So we tenderly understand how overwhelming it is to just get to the doctor. I mean, just getting to the doctor can be a mountain that seems insurmountable. And the number one way you advocate for yourself is to speak up and bring a buddy.

Jennifer Klotz, MS, RDN, LDN: So point number three for getting good care is bring a buddy with you. It is amazing how that can change the experience because it does it on several levels. One, that person can help you speak up for yourself. They can help you explain how you're feeling or their symptoms you're having, especially if you're going to the doctor and you have a migraine or you're in chronic pain and it's difficult for you to think when you are dealing with those symptoms, that person can help to communicate very clearly what is going on. Secondly, it can be hard to speak up for yourself, especially if you're feeling dismissed or you know, you're shutting down a little bit, that person can help to be like, No, no, no, no, no, no, no. No, I don't think, I don't think they're communicating clearly enough. Because they're having these headaches every day. They're, they're not just happening sometimes. They're happening all the time. And it is definitely impacting their quality of life. That person can help you get the care you need because they're not as attached to it. When it's yourself, it's amazing how quickly you can shut down and just start going with the flow and, okay, this is what they're going to do. It doesn't sound exactly what I need, but I'm just going to go with it because I don't want to make waves. That second person can be the person that's like, oh, no, no, we're going to splash just a little bit here because We care about them a lot and they're on the outside looking in and it's amazing how much easier it is for the second person to advocate for somebody when they care and they can see that the struggle is happening.

Heather Young, C-IAYT, CPT, RTY 500: Yeah, because they feel good. You're bringing in a second pair of ears, also in a second pair of eyes, so that way the nuances of next steps and treatment plans don't get missed.

Jennifer Klotz, MS, RDN, LDN: That too. It's amazing how you can walk out and think they said one thing, and then the other person who's gone in with you is like, hmm, I'm not sure they meant it that way. Really, that's what you took from that. So the second pair of ears is really needed. But along with that, they can take notes for you. and they can write things down and they can ask the clarification questions. What I will say is you want to make sure that you and the buddy have had a conversation before you go into the appointment. You want to be on the same page of what that buddy is doing for you. Do you just need them to sit there and be a grounder and listen? Or do you need them taking notes? Or do you give them the permission to say, hey, can you jump in if you feel like I am just I'm not communicating well and you can see that I'm struggling. You have my full permission to just jump in there and speak for me." But just make sure you and that buddy have had that conversation for what they're supporting you with.

Heather Young, C-IAYT, CPT, RTY 500: Really great advice. And then I would say if you have given them permission to speak up for you and you are in the middle of a really big fight. then you want to bring the person who's going to say the awkward because I am a person who would rather die than push back or say the awkward and it is can be life-saving to have that person in the room who pushes back because you want that person in the room with you you really do

Jennifer Klotz, MS, RDN, LDN: Yeah, you don't want to bring the person who also just gets in the boat. You don't. You want that person where you know that sometimes they say what no one else in the room will say. That's who you want in the room with you. You want the person who can be bold and speak truth when it is needed in a very nice and kind way, right? Because you always get way further with honey than vinegar. And within this, it's important to always remember that doctors are humans too. They've had, they've been working all day. They have lots of things on their plates. So it's not even like it's intentionally not trying to listen to you. Sometimes it's just that point in the day where, you know, they're starting to get tired. They've seen a lot of people. And so it's finding that collaboration between the two of you, which makes all the difference.

Heather Young, C-IAYT, CPT, RTY 500: It does. And that brings us to the next point, which is to be clear and persistent about your concerns and really show up in fighting for yourself.

Jennifer Klotz, MS, RDN, LDN: Know what your goal is, which is why writing it down is key, but continue to re-communicate and re-say. You know, you might have to re-say something seven times. And instead of getting frustrated with that, that's why we want you to go in with the awareness. You know what? I might have to say this a lot. I need to be clear and persistent. But that's OK. Because that's me showing up and taking care of myself and ensuring that I'm advocating in the best way that I can.

Heather Young, C-IAYT, CPT, RTY 500: Now, I will say you're trying to be persistent, you're trying to be clear, you've written down your questions, you're speaking up, and you really feel like they aren't listening. That can happen. In the PDF, we have a long list of just kind of like pivot phrases or statements that can hopefully still salvage the appointment for you or just turn on better communication because you get the healthcare provider's attention. Jen's gonna give you the top three, but there's a whole list in the PDF, and I think it's worth knowing these walking in just to be able to shift the room and shift the attention.

Jennifer Klotz, MS, RDN, LDN: Yeah, so one of the ways that you can say this is, I'm not feeling confident in our communication right now. It's crucial for me to express my concerns and to have you take them seriously. Said very nicely. Or, you know, I kind of feel like I'm not being heard right now. And I really respect your expertise. So I want to make sure that we are communicating right now. Or You know what, I really feel like we might not be on the same page and it's really important for me to get really good help today. So I just want to restate what I just said and make sure that you're, we're both communicating and set in a really nice tone because again, you're not trying to pit yourself against them. You are just expressing that, you know what, I feel like I'm being dismissed or I feel like they're planned currently. isn't really shaping out and feeling like I'm going to get answers from this appointment for things that I do think are important. Because the bottom line is, if you go and you go see a doctor or a healthcare professional for something, it's because you genuinely, one, either feel like something is wrong or something is off, or you are seeking support about something that you already know is happening within your body or supporting a specific chronic illness or disease and you want to walk away feeling like that issue that you went to that professional for is what is being addressed within that appointment. I don't know how many times. I mean, it's way too many. It's actually funny. I have had so many clients go to appointments for real issues like chronic pain or chronic migraines or the inability to, you know, sleep. And they walk away with the strangest tests. like where you're going, wait what just happened? Walk me through the steps of why this is the test that I am currently receiving because the honest answer is sometimes you're getting a test and it's not really what you need.

Heather Young, C-IAYT, CPT, RTY 500: That leads to the next point which is ask what does that mean or ask clarifying questions and in that in that moment you would want to ask Can you walk me through what information this is getting us or how this is helping me?

Jennifer Klotz, MS, RDN, LDN: Yes, because oftentimes it does correlate. We are not all medical professionals. And reiterating over and over again, it doesn't matter if you have to ask four times until there's full understanding there, because they're required to make sure that you understand what you're signing up for or what you are showing up for, why you are doing this test, and for them to explain, okay, you expressed these concerns. This is addressing this concern by looking for these things. Yeah. And you just keep saying over and over again, You know, I apologize, but could you explain that one more time? Or can you spell it?

Heather Young, C-IAYT, CPT, RTY 500: Yes. You want to look up the drug. I can't even tell you the things that are to be learned if you bother to just write down and get clarity on what's being suggested so you can look it up and decide if it's a good fit for you, if it's right for you to move forward with. So ask the questions. Now, you've made your plan. You have your goals. You have your questions. You're asking them. You have your buddy. You have your buddy. You've asked for them to be on your team and to be heard. And if it's still not working and you still aren't feeling heard or you're feeling dismissed then there's this moment where to get good care you have to understand that it's not all in your head and that's the biggest final point is it's not all in your head. Your lived experience is important and you deserve to feel heard for what you're walking into the doctor office to be have be addressed and there are still biases that exist. There are still old mentalities about some of the symptoms women can walk in with and while those are slowly changing you might bump into one of them and then that's when you have to have this knowing inside of you that you're worth respect, you're worth being heard and you're worth feeling seen in the doctor's office.

Jennifer Klotz, MS, RDN, LDN: That and if you're deeply concerned about the symptom and you don't feel like it's being you know considered thoughtfully, yeah you you want to keep advocating for yourself because you are the ones you're sitting in your body and you know that that symptom is causing distress or impacting your day-to-day lived experience and just taking a deep breath and saying, okay, I'm going to communicate one more time because symptoms really are sacred messengers. But on top of that also, if what we commonly see is if you are getting care for something and this is follow-up care and you're getting checked in on, on how things are going, then you also still want to keep speaking up and advocating for yourself because women are 50 to 75 percent likely to have adverse reactions to standardized prescription medications.

Heather Young, C-IAYT, CPT, RTY 500: I don't think this is something many people know. So they'll question saying something and speaking up and breaking the silence about what they're feeling. Yeah.

Jennifer Klotz, MS, RDN, LDN: And we do want to make sure that that is made very clear because this is something we commonly see is someone starts a new medication and their quality of life goes way down. They are getting debilitating symptom after debilitating symptom And it's very common associated with a medication you started. And many women are unaware that they're highly, highly likely to be experiencing adverse events. And it's because most medication dosage has been made based on research done exclusively on men. This is changing. They're working towards progress. But being aware of this, not from a, Oh, you know, women haven't been included research studies more from the angle of, Oh, so it's highly likely for me to not do well with this medication or with this dose. And you speaking up and advocating for either a change in medication or a change in dose. if you are experiencing not the greatest symptoms after starting something, I think is really important for someone to know.

Heather Young, C-IAYT, CPT, RTY 500: Yeah, especially to know that, you know, we have patients that feel better when they're on a quarter dose of something. Yes.

Jennifer Klotz, MS, RDN, LDN: And it's magic. Yeah. I will say that getting specialized dosing for medications is something more commonly done with specialists or with people who fall more under the umbrella of integrative medicine as opposed to standard of care or western medicine because that's the cool thing about integrative medicine is they are more open to trying to find what works for you and modifying it until that is found and The thing is, often if they have that umbrella, they also have more time to do that. So again, it's not, oh, this is better, this is worse. It's just you being able to show up and advocate based on the healthcare that you do have access to. And being aware of these things can make all the difference for feeling better or feeling like you're stuck. What does patient-centered care look like? What does good care sound like and look like? This is also included in the PDF, but top ones we do want to point out are active listening. You know, if it feels like the person you're working with is not really listening most of the time, then that is a clue that maybe you need to work with somebody else, or maybe you need to go to somebody else. Because listening is really important for you to feel like collaboration is happening.

Heather Young, C-IAYT, CPT, RTY 500: Yeah, and good care, while we understand there's this big, huge kind of like struggle between trying to get patients in to have them seen and having enough time with the patients, it'll never feel like you're just, you know, lounging on the beach under beach umbrellas chatting. However, it should feel like you're not completely rushed. It should feel like you have some time to ask questions or to discuss, you know, what's going on. And that's another big clue is that there should be this sense that you can discuss things with them.

Jennifer Klotz, MS, RDN, LDN: Yes, time for discussion and shared decision-making. Big one. Big one. And I do think this is changing as more and more people realize, wow, I'm the one that walks away with the harm. So I'm just not blindly just following I'm going to feel like I was involved with the decision to choose to do this medication or choose to do this procedure because ultimately there is always risks with anything and you want to know that you understood them and you had made the decision that it was the right choice for you.

Heather Young, C-IAYT, CPT, RTY 500: Yeah and then in good care when those decisions have been made there should be some sense of care coordination because this is actually a really big reason why you have issues when taking care of chronic illness or moving forward on treatment plans is there's a breakdown in communication between all providers. Yes. Huge one. So you should have some sense that if you're working with multiple providers there's some conversation or an awareness that communication needs to be happening between those providers. I actually can't emphasize that enough because that's a major way for you to check in if you know medications are going to contradict each other or if there's going to be any kind of reaction and to make sure that all of your providers are getting full scope of care and how that's being handled for you.

Jennifer Klotz, MS, RDN, LDN: Yes, and then lastly, follow-up plans. If you don't feel like there is a point of progression from a visit or from who you are working with, if it doesn't seem to move forward and you know how it's moving forward, then that's another like red flag for, OK, maybe need a different health care provider, need a different place to be getting care. Because if it's not progressing, you're staying stuck.

Heather Young, C-IAYT, CPT, RTY 500: Yeah. And then just the overall demeanor is important to mention, too, because It should feel like there is some sense of empathy or compassion there. It should. Yeah. Yeah. And there should be respect for your values and your personal beliefs. And that's a touchy one coming off of the pandemic. But I think it doesn't matter what you label it. There should be an understanding from the health care providers you're working with that you are an autonomous human who has your own values and belief that need to be respected.

Jennifer Klotz, MS, RDN, LDN: Lastly, This is a big one, is be confident. You should never feel like you're small, annoying, or too demanding for asking questions. More importantly, you should never ever be made to feel like your concerns or symptoms are all in your head. If you feel this way, You need to get another one. You need you need a different opinion. You need another practitioner because if you are walking away from an appointment that is supposed to help, and you are walking away confused, flustered, just feeling stuck, even shamed, that is that is not help. No, that is not forward progression. That is a whole jumble of things that you do not want.

Heather Young, C-IAYT, CPT, RTY 500: Your life and your self-worth change when you believe you can fire a doctor. And us saying that is not us poo-pooing the medical system. It's that you want to get rid of a doctor who's not on your team because there are so many good doctors out there.

Jennifer Klotz, MS, RDN, LDN: Yes, you want to find the one that is on your team. And that's also from the perspective of we stayed with people who were not on our team, who led us down paths that were not helpful. Our dad went through five urologists. Yeah, our dad went through five urologists. And so we walk what we preach because legitimately he was not getting good care. And it almost killed. It almost killed him. And so this is why, you know, we probably sound a little bit passionate sometimes. And just know that that that tone or that passion that you hear is because of a lived experience, but also a lived experience with our clients. And we just care a lot. about you being taken care of, because we truly believe, right, that's the heart of healthcare, care. And so we just wanted to empower you to be able to get it a little bit more often than maybe it could potentially feel like right now. And we also understand that. So if you feel stuck right now, you feel like you just have all of these symptoms, you don't feel good in your body, you're struggling to show up day in and day out, and you've already went to see people and they gave you a clean bill of health, you know, that's great. They didn't find anything major wrong with you. But just know on the flip side, that there are practitioners and people who do care whether or not you are having a good day, whether or not you are feeling good in your body. And they want to be there to give that support to you. They want to be there to change your life, to change your health.

Heather Young, C-IAYT, CPT, RTY 500: We are encouraging you to break the silence and speak up for yourself. And hopefully these tips help you feel a little bit more prepared to do that and empowered to do that. Now, if it raised questions, Tell us. We're in this conversation to help you and to continue to empower you to get good care and cheer for yourself. So we want to hear from you along the way and leave you with the final reminder that you're absolutely worth it and your life is worth it.