Melissa Winger
Appearances
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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,
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
And you're marked. You're marked as that patient. Exactly.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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,
Health Chatter
Navigating the Health System
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
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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?
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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?
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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,
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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?
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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?
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
Yeah. That is my only hope. And so thank you so much to get this conversation going.
Health Chatter
Navigating the Health System
And so when there isn't a patient at the table, the message is still out there.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
You are still to this day giving up all your control. And the way I always looked at it was, you know,
Health Chatter
Navigating the Health System
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
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
Watch what's going on. Be involved. And it's like, how? When you're at the worst part of your life.
Health Chatter
Navigating the Health System
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?
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
Yeah. I haven't figured that out. If you, if you know of anybody. Right.
Health Chatter
Navigating the Health System
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.
Health Chatter
Navigating the Health System
Well, the machine they're going to give you at home is a completely different model and it works completely different.
Health Chatter
Navigating the Health System
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,
Health Chatter
Navigating the Health System
we just had to wing it. It was unbelievable. Yeah. Yeah.
Health Chatter
Navigating the Health 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?