Stan and Clarence chat with Melissa Winger - author of Who Cares? The Real Patient Experience - about the complexities and challenges of navigating the health care system. Melissa Winger - a devoted public health practitioner - has an extensive background in quality improvement and health systems. Melissa serves as a Quality Improvement Specialist for UnitedHealth Group and as a Health Care Home Site Surveyor for the Minnesota Department of Health. In addition, Melissa serves on the American Academy of Pediatrics National Social Determinants Health Board, the National Technical Advisory Committee on Screening Tools, the Family Partnerships Executive Committee, the National Prehospital Pediatric Readiness Committee with the Department of Health and Human Services, and more.Listen along as Melissa details the challenges of the health care system and introduces her new book Who Cares? The Real Patient Experience - depicting our broken health care system through the realities a teen mom and her son with complex medical needs have faced over two decades. Purchase the book at your favorite book retailer. Join the conversation at healthchatterpodcast.comBrought to you in support of Hue-MAN, who is Creating Healthy Communities through Innovative Partnerships. More about their work can be found at http://huemanpartnership.org/
Hello, everybody. Welcome to Health Chatter. Today's episode is how to navigate the health system with a very, very special guest. I'll let Clarence introduce her in a minute, so I'll keep you all guessing who she is. But in the meantime, I'd like to really thank our great background crew. And we really have a crew that's second to none. They work really, really well together.
Sometimes when somebody can't do something, the other one picks up the ball and runs with it. So it's really, really good. And it makes our life, Clarence and my life, a lot easier in getting a successful health chatter show out to all of you. So thank you to Maddie Levine-Wolf, Aaron Collins, Deandra Howard,
And Sheridan Nygaard for doing all our great background research on all our shows that give us some good talking points and things that sometimes Clarence and I would never think of. And so that's very well appreciated. Matthew Campbell is our production manager. Sheridan also does our marketing as well. So thank you to her. And thanks for doing our show today as well, Sheridan.
And then, of course, there's my great partner in crime, Clarence Jones. He and I have a great time doing this together. We've learned how to chat a lot better over all of these shows, but it's been really fun. And we really, really appreciate all of our guests that have been here. an integral part as well. So with that, we're going to get the show moving today, navigating the health system.
And Clarence, I'll let you introduce our illustrious guest.
Thank you, Stan. And I'm glad you said illustrious because we have in the studio tonight, Ms. Melissa Winger. She's the author of the book, Who Cares? The Real Patient Experience. And she's talking about the experience of navigating, as she called, the broken health system. And Melissa and I have had the opportunity to be on a variety of different committees.
And when she shared that she was the author of a book, I thought, this lady has something to tell us and something to say. And so she is appointed a member of the Healthcare Home Advisory Committee, the Emergency Medical Services for Children, family representative.
She currently is on the American Academy of Pediatrics, the National Social Determinants Health Board, National Technical Advisory Committee on Screening Tools. Look, if I were... Listen, all the boards that she's on, I think I'd be here for the next 20 minutes. But the reason I'm really excited about it is that she's very, very passionate about this issue.
And so we're very, very excited to have you, Melissa. And we thank you for being here with us. And so with that, we would like to enter into this conversation with you about who cares. And you can share with us about your real patient experience.
Thank you so much. I am thrilled to be part of this podcast. It's a wonderful show, so I am honored to be on it. And yeah, just to start, I am not an author, not a writer. I don't know anything about publishing, but this was a story I needed to tell. And so that's when I took the journey on what it's like for the patient. And it is something that I have looked for on bookshelves for decades.
and couldn't find it. I couldn't find it from the patient's perspective. And so that's why I'm like, I guess I have to write it. So I had to learn all about how to write, how to publish a book. And here we are, but it took about four years to get here.
So let's talk about it. Let's start from the beginning. Tell us how you entered into this conversation. What was it? What was the epiphany or the experience that you had that caused you to think about writing this book about who cares?
Yeah, I think it is. So I have a son who's now 27, who has medical complexities. And so that is why I am a patient advocate or patient parent representative or whatever the term is. Consumer, I think we're called at some point. And I realized that over the time that it isn't like other industries where the consumer voice is present in everything.
And that's like other industries where you're purchasing products or services, healthcare is much different. And it's almost like the patient has to force themselves into the conversation. And it's a little backwards from other industries. And so that's what I've been doing for 10 plus years is
Anybody that wanted the patient experience, the patient representative, the patient at the table, whether it was to fill a checkbox, because sometimes you have to have, you know, according to some accreditation, you have to have a patient parent representative. And maybe that it was to check the box. But either way, I thought I could put this in a book.
And so when there isn't a patient at the table, the message is still out there.
You know, that's quite interesting because as I was saying, as I was reading your resume, you must be about like 30 boards. But I understand that because we've been together on a variety of committees, I understand your passion for it. Let's talk about your son though. Let's talk about the beginning of this book. How did you get him to become a patient advocate?
That was actually, it's an interesting story because I was a, Teen mom, even though I hate using that word, I haven't found a better one. But being a young mom and having a son in the hospital a lot for various issues, he's missing the bottom of his fourth chromosome. So every organ system was affected in some way.
And I just saw a flyer in the elevator for recruiting parents for the family advisory board at the hospital. And so I thought, sitting here day after day after day. I have a lot of experience. I'm just going to fill out an application.
And I remember at the bottom of the application thing that they require diversity on the groups to make sure that the entire population is represented on this board. And the only thing that I could think of, and I wrote it in big letters was I am 19. And then I sent it off and I thought, who is going to want a 19 year old board and I was accepted.
And then a couple years later, I was the chairperson. And as the chairperson, I get voted on again. And that sort of gave me that fire of I could see what I could do. You know, when you were able to have viewpoints on how the furniture was organized in a patient room or how their website was designed. And so I started seeing the benefits that I could provide.
And then I just have been unstoppable, I guess, being that everybody that wanted a patient and I was approached, I just said, yes, yes, yes, of course.
Yeah, yeah. You know, so I've got a couple of interesting, you know, as I think about navigating the health system, It seems to me kind of an analogous situation in my mind is when any of us go like on an airplane, everything is out of our control. Here but the grace of God, we hope that this pilot and the co-pilot knows what the hell they're doing. Now, let's think about the health system.
Same thing. It's like when we have to get in to get some kind of care, whether it be for chronic condition or what have you, we're out of control. We hope that whoever it is at any given time really knows what they're doing. And at that point, correct me if I'm wrong, we don't even think about insurance because we're sick or somebody that we're attending to is sick and needs attention.
So talk to me a little bit about that. You know, it's like this kind of sense of loss of control when we really need assistance, medical assistance.
I agree. And I took a spin on that in the book because we use this concept of patient-centered And it's hard for me to understand what that means. And it's almost like a fluff word, so to speak. It's this, you are told you're at the center, but in reality, what does that mean? And it's true. And I love, love the airline analogy because it is true.
You are still to this day giving up all your control. And the way I always looked at it was, you know,
literally handing my baby over for someone to put a knife to them like it was so right right that's not natural to a mother right I'm supposed to protect him I'm supposed to keep him from harm even though in the back of your head you know right that that it is needed for their health or their well-being but it's that concept of of handing your your baby over in that scenario that it's terrifying I'm
And it never got easier. My son is 27 and I have to walk him back to surgery and I feel the same as I did when he was four months old. And that's why I took a different spin on the book to say, you are told over and over to be an advocate and you have to fight and stand up. And I'm like, why, why? We are at our worst. We are sick. We are weak. And now we're saying, nope, get up. Be alert.
Watch what's going on. Be involved. And it's like, how? When you're at the worst part of your life.
Right.
And vulnerable.
Really vulnerable, too. You know, Stan and Melissa, one of the things that, and I think Stan and you and Melissa both brought this up, is that we go into this system with the expectation that we're going to have a positive experience, that people that we are working with will have our best interests at heart.
But I think according to the research, it says that only about 33% of 1,800 people that were surveyed, only about 33% of them reported never having a bad health experience, health-related experience. But according to a Forbes article, 60% of Americans have had an outright negative health care experience. And that seems to go against what we think about how it should work.
But we are working with the system that we need. But at the same time, it just seems that there are things that are going on that are not necessarily in our best interest. So Melissa, what do you think about that?
Yeah, I agree. And one of the things that I think I came across when writing this book. I added a ton of research to it as well because my experience is just my experience. And so I wanted to capture the entire picture is when they surveyed nursing staff and how many of them would not recommend their own hospital to a family member. And I was like, why don't we use that data?
Right, right.
Your own employees.
Right.
family members or their own or themselves to the hospital they work at. And they're the ones that know, right? They're the ones that truly know what goes on.
Yeah, and that actually was my experience too, is that I was in a place where they wouldn't even recommend their own family. They wouldn't bring their own family. And they would say that. I'm like, how can you do that? But obviously there are some things that are amiss.
You know, and the whole thing, you know, besides the care side of the equation, okay, where you're kind of, you know, at the mercy of the healthcare providers, then there's the other side of the equation navigating this health system, which is so damn confusing. It's just like, you know, even for those of us who are in healthcare care. Okay.
Some angle of it doesn't matter where, even for us, it's just like, my God, you know, it's like, it's just insane. I'll give you a perfect illustration. So, you know, I, I see orthopedic patients after they've had knee surgery and here's just a little microcosm of what I think is just crazy.
There are these machines that they use to provide iced water around a person's knee, a machine, electric machine, okay? And you ready? The patients can rent the machines. And I'm thinking, you know, and I've talked to these patients and I've said to them, I said, isn't it sad? Isn't it just sad that your insurance just doesn't cover this machine for, you know, two weeks while you need it at home.
It's $75 a week. Okay. To rent it. And I'm thinking, think about the complicated aspects for a patient who's at the mercy of everybody because their knee is killing them at that point and they want to use this machine. So what do I say? I say, you know, you've come this far, just rent it. If you can afford it, just do it because your recovery will be quicker.
But again, it's just like all these little dumb things that drive us all nuts. And it creates stress, I think too. So, and that's the point I want to take up with you. It's like under Who cares? How do you kind of monitor stress?
Yeah. I haven't figured that out. If you, if you know of anybody. Right.
That's another book.
Yeah. Yeah. Nobody's doing you any favors in this industry. And I had a similar experience with my son as a, reading a breathing machine. And it's a BiPAP or CPAP. So it's commonly used for CPAP. But I have to put it on a baby. And I remember going home with this machine and being taught how to use the machine in the hospital.
Well, the machine they're going to give you at home is a completely different model and it works completely different.
Yeah.
And so I wanted to bring my home machine. I just got dropped off and my home machine into the hospital so they could teach me how to use it on my son before I went home. And I brought the machine in and they said, Oh no, no, no, no. That's a home equipment. We can't touch that. You know, we have to use the hospital equipment. I'm like, I don't know how to use this. And now I'm,
we just had to wing it. It was unbelievable. Yeah. Yeah.
Yeah. So Melissa, let me ask this question. What do you think are the issues? What's really behind the issues that's causing this system to be so broken? What are your thoughts? I know there's a variety of different things, but what do you think are some of the primary reasons why there is such a broken system?
i didn't realize the trend until i finished the book um but every chapter everything i ever wrote in this book um i mentioned reimbursement rates and i'm dealing with the medicaid uh with my son and everything went back to that and so but in also in a bigger picture the competing priorities You know, are the pharmaceutical industry, what are they interested in?
Maybe they're interested in profits, creating new drugs, being, you know, a shareholder situation, or what are the benefits of a hospital? What are the benefits of the accreditation organizations? Every single part of the healthcare system, I feel like has a different priority. Sadly, I don't think any of those, I think that's number one in any industry. is what I kind of came to the conclusion.
If something else, patients are there, or if it's a public announcement, patients are always going to be at the top. But in the background, it's like, yeah, but if it's dollars or if it's, you know, market share, okay, that might take the top. I don't think it'll ever be announced that way, but.
Yeah, it's interesting that you're saying that. I always tell people that the color of America is not black or white. It's really green. It's all about the money. And unfortunately, you know, we find people that are in a position that should be more caring who are... unfortunately more concerned about the bottom line. Somebody once told me they said, the color of corporate America is green.
Whenever it becomes red, it dies. So, you know, in terms of the ink and all those kinds of things, but do you think that there is really a lack of empathy? I mean, in this work?
Um, no, I actually think that people that are delivering the care, um, are in it for the right reasons. I think they're, uh, Their leadership or whoever is directing them is the ones that make it difficult.
So I'm not the only one like frustrated with the patient perspective, but I find that a lot of actual frontline caregivers are equally as frustrated with the process because they can't properly care for the patients they want to because they're told, nope, you got to see a patient every 15 minutes or whatever. Nope, you're an RN on a floor. You got 10 patients to look after.
And so they're being stretched to the limit. And that's why I think we're seeing all this burnout because they get into it because I think they truly want to help the patient. And then they get in the system and there's so many barriers to that. And it's really unfortunate and sad that people maybe at the higher up level have that different priority.
I think also when you look at regulation, policy, government, they put things into policy or into law with the patient at mind, right? So I'm going to use an example of our electronic medical records, right? So there was this whole push, your medical records are going to follow you across the country, across specialists,
But then when it got down to the level of doing it, that's when you saw all the priorities shift and you saw a different priority. And nope, us as a EHR company, we want to take our market share and have our one product. We don't want to share with another. We don't want to share with this place or that place because we need to make money off our product. So that's really never come to fruition.
So the law is there with the patient in mind, but yet when you put those into play, it's that whole system of, yeah, but what's in it for me? And is there a loophole perhaps that I could use to get around this protocol or this policy? I think that's what happens. But the intentions are there.
So let me ask, so, you know, it's like, for those of us who have been, you know, in healthcare for a while, we're kind of aware of this craziness. And we hear stories like we had, you know, one of our other shows was with Catherine Standifer who wrote Lightning Flowers, who had a very similar situation. She had a very, very serious heart condition
and here it is she had to navigate you know through all of this all right so same by the way a great book um so you know you get to a point where all right we all kind of know or are kind of at least aware of the problem or problems Where do we start to try to get this thing solved already? You know, it's kind of like enough already. It's created so many headaches.
What, in your opinion, Melissa, might be the road to a good solution here?
That's a tough one. And it's hard to think about because it's so huge. It's so big. And if you think of all of the people involved in the health system, all of the companies, all of the industries, I think that's why nobody really takes it on. Or when government tries to take it on, it doesn't work. I think we've allowed it to get to this place. I hope it will get better over time.
That's the whole reason I wrote the book, to get the perspective out there. But the only kind of advice I can even give patients is, even if you're not sick now, you probably will be a patient at some point in your life. And you better study up now.
It sounds like, it sounds like Melissa, that you don't have a lot of hope for the system. And I was thinking about this question. I said, you know, We all know that after COVID, I mean, there are a lot of people that they're not going back to work. I mean, they have nursing shortages and doctor shortages and people saying like, I'm not getting back involved in this. And so a lack of staff.
And what do you see as a glimmer of hope? Is there something that we should be thinking about as a glimmer of hope for trying to address this issue?
I think we have a problem listening to those that are frustrated. We want to pretend that those people, okay, they're a problem patient. They're a problem employee. We'll just get someone else or we'll just ignore them. If there's enough of us, they're going to listen. And it's hard because you can't get up and speak and you can't oppose to a system that you are expecting to care for you. Right.
So I'm going to go and I'm going to complain about my son's had a ton of medical accidents is what I would call them. And I had to be super careful about anything I said or did because my son's coming back in two weeks for another surgery.
Yeah.
Right.
And you're marked. You're marked as that patient. Exactly.
Yeah, so tell me about that problem patient. What was that like for you?
Yeah, so I'm a problem patient. My son isn't. I am.
It's a problem mother, right?
I know. But my own, I've talked about this story a couple times, but it was I've been, I have literally as a patient, me personally have been discharged from a clinic, um, for noncompliance, which that word is horrible because we're saying we're patient centered. We're all about the patient yet follow our orders. You're noncompliant. Um, And you're shamed. I feel like that's a shaming word.
Anyways, I'll go back to my, get off my soapbox on that one. And I had a horrible sudden heart condition at the age of 20. So my son's three and he's at his worst. I'm operating like a mini ICU in my kid's bedroom. And I have an arrhythmia that's out of control. And I would go to the emergency room.
I would wait to go to the emergency room until my night nurse came, but only had night nurses twice, like twice a week. So I would sit with this horrific arrhythmia until I had a night nurse to care for my son. And eventually ended up with a pacemaker and I'm pacemaker dependent. And right after the surgery, they said, you need to be on these blood thinners.
Um, and with blood thinners back then, so we're talking 1999, um, you come in for weekly lab draws. And I wouldn't go. I said, there's no way I'm packing up an immune compromised child hooked up to equipment and feeding tubes once a week to a clinic where they're supposed to everything. I'm not doing it. So I eventually, I didn't get my labs drawn.
I stopped taking the medication and the clinic was, they discharged me. Say for a non-compliant patient. And then, but the next clinic I went to,
completely different story they got me on a protocol for a home um INR machine and was able to do my INRs at home problem solved but they this the new clinic looked at my whole situation and worked with me the last clinic was like these were our orders you didn't follow them bye and I know the orders are for good reason but yeah so all right so I
Right. So I want to talk about what's, what's come out of your, your, your information here is the concept of trust and the concept of protocols. So let's talk about trust for just a second. Again, we had a show about trust. All right. Which I, again, I think is, is frankly one of the solutions. I really, really do. If for, I'll give a, for instance,
About, oh, I don't know, three, four months ago, I had to get in to see my internist, okay? I called to make an appointment. You can't get in to see Paul for, you know, six months. And I'm thinking, what? This is, you know, come on. So you know what I did? I wrote a note directly to my internist, who I've known for a long time. He writes me back, Stan, give me two hours and I'll get back to you.
Within an hour, I get a call from, you know, the scheduling person. You know, Dr. Gottlieb, we'll see you, you know, next week. Well, okay, so I have a good, trusted relationship with a physician. That isn't true with everybody.
And I think, I might be wrong, that a good, trusted relationship, one way or the other, like with this second clinic that you went to, that would increase trust, for God's sakes, you know, for your care. So I think trust is one aspect. What do you think about that? Is that?
reasonable yes oh they you know if you trust your provider and they show um even that's the reason for the name of the book is because you know they're gonna they care right they care about what happens to you um do, even if they can't do anything, let's say they're a pulmonologist, and I got a problem with my son's foot. I mean, he can't do anything.
But he's gonna help me, he's gonna get me, you know, he'll be like, Oh, okay, let's do this. Let's do that. And let's get you to where you need to be. Right. So I, the reason for the title of the book was legit conversation where I was losing, I was at my breaking point, I was so frustrated with the process.
And it was around getting my son's feeding tube resized during a hospital stay and was told, no, no, no, you have to be discharged, come back to the surgery appointment, because that's not the goal of the hospitalization. And I just, I remember calling this pediatrician and I'm like, what, seriously, I just need this thing resized. It's leaking. He's got, you know, wounds. This is horrible.
And he said, what do you want me to do? I can't, you know, and I said, I want you to care. I said, I just want you to care. Because I know if you cared, you're going to help me out. You're going to do something. You're going to take one extra step for me somehow. And that's all I just said was, I want you to care. And I kind of basically hung up and then apologized, of course.
You know, but I really think that that's, part of a solution for this big, humongous problem that we have. If people like any one of us individually established a trusted relationship with their provider, that in and of itself will help you to navigate. I think, I guess maybe I hope. So the other question I have for you is this, is this whole idea of protocols.
So, you know, you're in the quality improvement arena. Ironically, my daughter is too at Dana-Farber in, you know, cancer institute in Boston. She's a quality improvement engineer. And this is what she said to me. God, it must have been a month ago.
She says, Stan, you know, it gets really frustrating trying to do quality improvement in the health arena because everything is established under the guise of protocols. And if indeed you're trying to improve care or what have you, the first thing that they do is look at the protocol. And try to change the protocol, which God knows takes how long. So I'm sure you've had some experience with that.
So what's your thoughts on that?
I think, you know, I look at the quality lens in a, what are we doing that's of value to the patient? And then how do we get there? So protocols, and I know that they're there for a reason. I try to go on that model of, Why are we doing this? Why are well child visits important? You know, why are all these things important? Because why do they need them?
In these protocols, they can just say like a certain, you know, measure healthcare measure. It's but why? Why is that? Because you just say, you know, a one C's need to be drawn once a year, but we need to go why? You know, why? What's the what's the reason behind that? Well, you know, then you can start seeing all the benefits and the value actually to the patient in the long run.
So I try to focus on that, which can be very hard because I'm always in that patient perspective of why would I do this? Why would I go in and, you know, colonoscopy is a horrible procedure, in my opinion. Why would I want to go in there? And I don't just say you have to because it says in the protocol you have to. No, I want to know why.
And then if you go into the background of the risks, then it's like, oh, I get it. Okay. We don't go to that level of explaining things.
So if I sense what you're saying, it's for us as consumers, I guess is the best way to describe us. Knowing how I guess how to ask the right questions or just ask what you believe are the right questions and don't be intimidated by it all. Because all the stuff that's done for acute treatment and disease management can be really overwhelming. And yet, It's on us.
It really should be on us to ask the hard questions. And I don't think people do that.
And also, we're at a disadvantage as patients. I want to look things up. I want to research things even. But you can't ever go to your doctor and say you jumped online and looked at stuff. They'll be like, whoa, whoa.
but I think you know physicians and everyone needs to know yeah you're going online let's just accept that patients are jumping online and if it's not them themselves it's a family member let's say oh I just read about this but what we're at a disadvantage is because we don't get the real research those are locked behind you know the journals that are subscription only
are written in ways that no one is going to understand, you know, beyond a doctorate level, right? So where's our information coming from? And it's coming from those sources that we're told are unreliable. Well, then give us the reliable ones.
Let me ask this question. Do you think doctors understand the patient experience?
Unless they've been one themselves. They're so easy to, I go through this in the book that stuff that you're told that you have to do as a patient or a family member is impossible. And I always think you're going to this hospital level care. So even my son starting out with ICU level care, he has this massive team, respiratory therapists, RNs, doctors, intensivists.
He just has this whole team caring for him. Then you go down to like a step down unit, right? So then you still have your RN, you have your doctors rounding every day. You might have a social worker coming in and then you're told to go home and it's just you. But a lot of times my son was on the same equipment. He's on feeding tubes. He's on 10 different medications.
Those medications are to be given like every two hours. Are you kidding me? When do I sleep? And then you get into the outpatient stuff and you're like, ooh, physical therapy, occupational therapy. Do these exercises and these exercises and then speech. And I'm like, this is impossible. But we do that. We put the ownership on the patient. We take pride in getting them home sooner.
Get them out the door, but you're just transferring care. You're taking out the level of care that this person may need or recovering from surgery perhaps. You're just shifting it to the parents or you're shifting it to a family member. Or what if that person doesn't have any caregivers? You're like, here you go. Here's your wound care stuff. Here's your prescription.
No one's there to put it on a timetable for you. No one's there to say, okay, this one's with food. This one's not. You're just given a bag of prescriptions and off you go.
Wow. One of the things that Sheridan came up with, I mean, for this navigating the healthcare system, he says that a misguided attempt to improve healthcare has led some hospitals to focus on making people happy rather than making them well. What do you think about that comment?
That makes me a little nervous too, because they think, well, fine, whatever the patient's going to ask me for, I'll have to give it to them because I don't want a bad review, right? With social media and all that kind of stuff. That's where I think we're getting into a little trouble. I get the, I get why, because other industries work, right?
Don't go to that restaurant, put your review out there. And you just want that patient to be happy and but there's a way to go about that. It's not that they just, the patient wants you, because everybody can walk in and ask for an antibiotic for things that an antibiotic won't fix. I think that patient would be just as happy with some time and understanding of why that's not the best choice.
But I think where we get into trouble is they, either they just give the drug because they want to make you happy or they just say no, but they don't give you a reason.
Yeah.
I think those are the things I don't think we need to go down the route of these personal reviews on physicians because it's so complex. You're reading a simple review about a physician. You have no idea the patients, um, what their conditions were, how they were managed. So I don't think that's the appropriate outlet to go. Um, but I also have issues that are in the book about, um,
the star ratings and other things by accreditation companies. I don't think that that is a good way to go either because they're misleading.
Yeah. Yeah. You know, it's so Clarence to your point. You know, I think about like in a children's hospital, I can guarantee you that nine times nine kids out of 10 would be happy when they're in the hospital. If you gave them an ice cream cone, right. Okay. That's right.
Come on.
Adults, too. Absolutely. But on the other hand, we've got the medical condition to to attend to. So I think if if I'm not mistaken, there's a balance. There's a real a real, real balance there. in that kind of question that you're talking to.
I do know from based on my experience dealing with, you know, the orthopedic patients I see, they greatly appreciate talking to somebody who's gone through it. Okay, so like, you know, an orthopedic surgeon who replaces a knee, you know, standing there doing the surgery, but guess what? They don't have a replaced knee themselves.
So they've never experienced, they've heard about the pain and they've treated patients with pain and the discomfort of it, but they can't empathize with it. So then when I go in, somebody who's had a knee replacement, I talk to a patient, they're so grateful. They're absolutely so grateful.
I mean, that makes them happy because they're getting some good information from somebody who's been down the path. Okay. And I think that may, so my response to you, Clarence, is a balance. Ice cream and, you know, good care.
You know, when I was looking at your title of your book with who cares, I think about, for me, so many people have the, whether it's real or not, so many people have the perception that nobody cares. So why do I go to the doctor? I mean, I'd rather take care of myself versus trusting a system that is not sympathetic or empathetic towards me.
And I think about how do we, how is it, or what is it that we can do to help to address this issue? I know that you talked about having patients being fully aware of what they're going through. But are there some other things that we could be looking at? I mean, are there some other things that we as consumers should be talking about?
I mean, that's part of why we have this kind of show is that we know that these are real issues. This is the chatter that we're having right now. We're just chatting about the fact what everybody else has heard or they know about is that we have some problems here. So what is it that we should be doing? What is it that we should be thinking about
I like to take the look at, obviously from the patient perspective, but the fact that the patient experience is kind of a new thing. We're measuring it now. We're looking at it. It's like we've been patients for how long? And now it's finally in 20. Now we're going to, oh, now maybe we should pay attention.
Right.
And if using those things like in a clinic level is my suggestion is what are preventing your patients from coming to see you? What would you personally not like about coming to your clinic? And these are things that are, well, I work full time. My kid goes to school. Why are you only open from eight to five? Right. Now I got to take the day off and I got to pull my kid from school.
But then you go in and you kind of sometimes you're a little shamed if your child misses too much school. And it's like, yeah, but we had to take off for today. Or you look at those things with coming into the appointment. How many clinics and I get why they're looking at their patient schedule, but how many clinics have rules where if you are late and
And if you're late more than three times, you're discharged from that clinic. It's like all of those things kind of make you not want to go. Or if you've ever been shamed about a habit you have, instead of them helping you, them telling you that's wrong, you're unhealthy, that's so bad for you. It's like, I don't want to take the day off work to go have that conversation.
All of those things that make you go, why don't I ever want to go to the doctor? It's like, can you change those in your clinic?
You know, I think one of the things that I like that, I think one of the things for me and some of my experiences, and it's not for everything, but it's how patients are received that also makes them have the perception like, who cares?
I mean, if you have a bad front desk person, receptionist, or you have people that, you know, will make you sit for an hour or two, and then, you know, then you have your 10 minute, your 10 minute job. it really creates a real issue for families. And I think that that's why it's so important to talk about it because we want to talk about what is the real patient's experience?
And then how do we inform people, both the patient, the consumer, as well as the practitioner on how to make that experience better? And I think that that's, you know, make it better and not more bitter. You know what I mean? So I think that part of what I like about your book, you know, is the fact that you're trying to help us to address this. And I appreciate that. That's my thought.
I have a ton of ideas on, if you think from the patient perspective, I mean, these are, why are kids, for their postnatal appointment for new mothers, now they have a new, we don't even think of this, they have a newborn. Their newborn also needs a well-trialed. you know, in the perfect world, could we combine that? Could the mom and baby come in and get both things done?
Could you have an OB and a pediatrician? Those types of things. And I know that's a wishful thinking, but if we really were on the patient side, we'd go, Oh yeah.
So, you know, I keep saying, you know, a lot of things under this umbrella, um, it's easy for us to maybe say we've got communication issues. Okay. Which, which we do not only in this, but in a million other things. Um, however, you know, being, being solution oriented, if we can for, for, for a minute, um, Let's play this one out.
If somebody's got to go in for a procedure, you could probably think of your son, for instance. He's got to go in for a procedure. Well, automatically, everybody's stress level is heightened. What is it, based on your experience, what is it that would have been really good
for you to hear or be aware of before one of your son's particular procedures that would have really helped you to keep that stress level down, which obviously that is going to help your son, you know, et cetera. Can you reflect on that a little bit?
I think it's going back to what you said earlier. It's you want to know front to back, not good things, but anything that possibly could happen, even at the procedure level, but also we talk about the procedure level and the risks and all that, but we don't really necessarily say anything about recovery. And this could happen a week. Yeah, this could happen a week later, two weeks later.
And also talking to another person who's had the procedure, that is just taboo, right? We're like, HIPAA, no way. Are we going to connect you with another family? But there are families like I would be thrilled to talk to another parent who's getting their baby's getting a feeding tube. Yeah, I want to be contacted. Yeah, we don't even bother to ask. Right.
Or is there a system set up to to do something like that? That seems like a no brainer to me. Right. I don't know. There are certain programs that do, like in the cardiovascular arena, there's some programs that are called mended hearts. For somebody who has gone through heart surgery, for instance, and somebody who is facing it, they connect them. Wonderful. Absolutely wonderful.
I can't imagine it not being a stress reducer. Yeah.
And there are people that are suited for it, and there's people that aren't. I think there's a tiny risk, and that's why we don't do it, is that you might get connected with somebody who had an awful experience and make you think that it's completely awful 100% of the time, and so then maybe you don't... Correct. But that's a small... Small percentage. But because of that, we don't do it at all.
Yeah, or minimal. All right, so... Clarence, how do we get the gestalt around all of this? I mean, it's just like, okay, navigating the healthcare system. Oh my God. You know, just by saying that, you know, it increases your blood pressure. God knows how much. What should we be telling everybody out there in the listening audience?
We didn't solve it. I thought we solved it.
Yeah, I'm done. We should all get the Nobel Prize.
I actually think that a clear understanding of the patient's experience will help clinicians to do a better job, but also to help the patient to understand more. There is not enough, as we talked about communication, there's not enough of an understanding between each other. I mean, we talk about
at least for me, I talk about the whole idea about translation, making sure that the patient and the clinician both are on the same page when it comes to these issues so that you don't have this conflict, which could be easily addressed by people being more empathetic. And so I think that part of it really is we need to understand what the real experiences are.
And I think that this book, as you just said, is part of the conversation that may help us to get to this next level.
Yeah.
I think a doctor should hand this out to every patient.
Yeah. It's the consumers that are getting like those surveys. Filling out those surveys. I filled out 7,000 of them and no changes were made. Yeah. And so don't do those, you know, it's those check marks, likely to recommend. why don't you give me a text box that I can put, this is what's wrong, this is what would have made it better. And then actually do it.
Well, I'll tell you, I don't know if we've solved anything. We've certainly put the issues out in the forefront. And I hope our listening audience realizes that you don't have to sit on your thumbs. You really don't. You can be an active participant in your own care, in the care of your loved ones, et cetera, and feel that you shouldn't be intimidated. Ask the right questions respectfully.
That's fine. It shows that you care in the sense that you hope that they care as well. Clarence, last thoughts.
You know what, Melissa, I want to thank you very much for this conversation. I have not had the you said everybody at some point will go into this medical possibility of having to go through the system. I have not had the experience yet of going through the system with so many issues. But I tell you what, it's very good to know that there are ways to alleviate or to address things.
I think that with your book, you're opening up the open up the pathway for conversation. And so for those people who are in the system or who are going to go into the system, there's at least a better foundation for understanding. And so I want to thank you for being a part of our show. So those are my thoughts.
You know, I want to thank you as well. It's like, you know, personally, my takeaway from a show like this is it's okay to ask. It really is. Don't just assume, okay, you know, it's okay to say why or ask why or question something every once in a while. Or it is okay to be an advocate for a loved one. I mean, don't think that you have to be intimidated by doing that. And I think the more we say it,
And the more we as consumers hear it and the more the healthcare providers and the health systems hear it, perhaps and hopefully we'll be on the right page together.
Yeah. That is my only hope. And so thank you so much to get this conversation going.
You are an absolute gem. And we thank you so much for being part of our show. Exactly. To our listening audience, we hope to get this show out ASAP. So stay tuned and watch our Health Chatter website for that. In the meantime, we have more great shows coming up, so stay tuned for them. Everybody says, you know, what happens when you run out of topics in healthcare?
Believe me, I don't think we have to worry. So with that, everybody, everybody out there, keep health chatting away.
Hi, everyone. It's Matthew from Behind the Scenes. And I wanted to let everyone know that we have a new website up and running, HelpChatterPodcast.com. You can go on there. You can interact with us. You can communicate with us, send us a message. You can comment on each episode. You can rate us.
And it's just another way for everyone to communicate with Stan and Clarence and all of us at the Help Chatter team. So definitely check it out. Again, that's HelpChatterPodcast.com.