Navigating Healthcare: Lessons from a Patient Advocate, feat. Dana Sherwin, CEO of The Thinking Patient

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Welcome to Confessions of a Terrible Leader, where real leaders share the raw truth about the lessons they learned the hard way so you don't have to. Join our host, Lacey Nelson, founder of Transcend Leadership Collective and former Terrible Leader. On this podcast, we invite you to step into the confessional and get real with the messy stories and behind-the-scenes reality of leadership. Let's get to it.

Listeners and watchers and welcome back to confessions of a terrible leader I'm your host and let us not forget former terrible leader herself Lacey Nelson I am thrilled to welcome Dana Sherwin to the show Dana. Thank you for your time today

Thank you for this opportunity to have this discussion with you. Appreciate it.

Yes, this is something listeners that if you've been listening for a while, you'll know I'm going to be very personally invested in this conversation. Dana has created a framework called the Thinking Patient for helping us be better consumers of our own health care and advocates for ourselves in our own health care. Anyone who's ever dealt with a serious health issue knows that it is just

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a web that can seem completely incomprehensible. And our health outcomes really are determinate in our current system and our ability to not only navigate it, but to advocate for ourselves, ask good questions. Dana, educate us. I'm so glad you're here. Tell us. I want to know about what is the thinking patient. Tell us that. I'm sure I'm going to have nine million more questions. So welcome.

Well, thank you, Lacey. My journey really began at a very early age. My father worked in the health insurance industry and he introduced me to various careers. And I knew that I wasn't going to be a doctor or a nurse, but I was really interested in doing something socially important and relevant. And healthcare became very important to me as a direction, as a profession that I could go into from the management operations, that kind of side of the equation.

and for a master's in healthcare administration because I was on this path. I was resolute on this path for 35 years, working in various healthcare settings and doing a lot of things. But the thing that I wasn't doing was taking care of my health. And I really didn't pay attention to some early signs in my 20s and my 30s about what was happening to me because they were symptoms that I could sort of live with until I was in pain.

I went to see a few doctors and they identified that I had a blood clot in the portal vein of my liver and that I needed to be admitted to the hospital immediately. that time, I didn't even have a primary care physician. I was seeing my OB-GYN as my primary care physician, which was a very big mistake. In a way, I was very fortunate that my condition was mild enough that I just needed to be monitored. I had a blood cancer disorder.

Gosh.

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which had a genetic underpinning. And I was just able to live my life for 20 years being monitored, no medication, but just taking better care of myself until my health crashed and I needed a stem cell transplant. And there was no other cure and there still is no other cure for this disease. So five and a half years ago, I had the stem cell transplant and I'm happy to be here to say that I have had a really good recovery.

But the most important thing about my recovery is that I learned so many things about communicating with doctors and taking care of your health that the light bulb went off in my head. With my background as a healthcare administrator, coupled with my experience as a patient with a chronic illness that the only cure was a stem cell transplant and the kind of system, healthcare system that you have to be in. All this stuff put together.

to come up with, how can I use what I've learned? And I did a lot of research on my own, separate from my personal experience, and then said, there must be a better way. How come hospitals, doctors, insurance companies, nobody teaches people fundamental aspects of communicating with doctors and...

doing the best for your own health. And as you mentioned earlier at the start, being engaged in your care. And one thing actually that the research shows is that being engaged in your care, you have a better chance for better health outcomes. And I say this at the beginning of any presentation that I do on this issue, because I was in the healthcare field and I didn't really realize that or understand.

Yes. my gosh, what a journey. I want to know how common is it? You would think you would have been set up more beautifully than anyone to be paying attention to your own health, to have a primary care provider. You were right there in it. Is it a pretty common behavior or phenomenon that within the healthcare industry, it is a norm that people aren't necessarily practicing their own best advice?

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Or do they even give the advice, I guess? Maybe that's a better first question.

Well, I do think that people who work in the healthcare field, just like people in other industries, who have busy, active lives in your 20s, in your 30s, your 40s, you have your career, you're raising kids, you have a good level of living, your focus is not really on your health. Yes, there are people that exercise and eat well, but there are still 50 % of the working population has one or more chronic conditions. So there are a lot of people that do not take care of their health.

Yeah. But more than that, because of the way the healthcare system is set up, hospitals are set up for urgent emergencies, dealing with acute and chronic issues. Right. Doctors' offices are set up where there are limited appointment times, 15 minutes, 20 minutes. Yeah. So the physician and the patient come together. And this is one of the things that I looked at very carefully. The pressure is on the physicians, the pressure is on the patient to come to the appointment very well prepared.

And I knew I couldn't really look to influence necessarily medical care and physician practice. not a medical professional. What I am is a person who understands how the system works and that what a patient needs to do to take charge of their own health. And I came to the conclusion that everybody needs to be the CEO of their own health because it is very complicated. And also healthcare is expensive, but it's also

from an investment point of view, making this investment in your health and what you can do to participate in that. And it's really not about standing up for yourself and advocating, it's about being a partner, being knowledgeable enough and developing the skills and the tools and the courage. And that's what I talk about in my framework, all these different parts to give people a pathway when you're feeling scared, no one likes to see doctors, scared, frustrated, having anxiety, members of the family.

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family were sick, this is going to happen to me. Whatever the reason, you might put off care or don't really pay much attention until you get to the doctor's appointment. All these things, if you understand some sort of elemental skills of communicating better with doctors, you can have that anxiety, but it's relieved. You have a pathway to move forward and you can take care of yourself better.

I would love for you to walk me through your framework with an example. So I think that's very common what you just spoke to. I have medical anxiety because of things I've seen my family go through and understanding that I'm not one of those people that thinks, it could never happen to me. I'm one of those people that's like, it absolutely could. It can happen to anyone. And that's a big source of anxiety alone. What advice do you give using your framework?

Where do you even start? Let's say I have my pick a random screening appointment and I need to go in prepared. Your choice on what the screening is. Walk me through your framework so I can be a better participant. I like how you said it's not necessarily just say, give me the appointment, advocating for moving things along. It's actually participating and coming in prepared for an appointment. Walk me through that.

Yes, absolutely. That word you use, that's the first part of the framework. The first part of the framework is preparation. Preparation because, again, limited appointment time. So you want to go into the appointment with an agenda, what you'd like to accomplish, what your priorities are. It's a short amount of time. What do you want to prioritize that you want to make sure happens during that appointment? And if your list is longer than that.

making sure you ask the doctor, have these other questions, how do I communicate with you in between appointments? I don't want to wait till the next appointment. But asking that question, the preparation includes writing these things down, creating some type of system. I actually created my own sort of book, I call it The Thinking Patient Planner, but my focus is not on use my book. The focus is on have a notebook.

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and keep that notebook for every appointment and write down to prepare for that appointment, what your priorities are, your agenda, what your questions are, follow up questions from the last meeting. And if you have all of it in one place, it becomes an easy referral source. Also, if you're going to see a new doctor for a specialty, then you want to maybe Google, because it's all over the internet.

You're seeing a new dermatologist. What question should I be asking my dermatologist about my annual care, my skincare, what kinds of checkups, whatever it is. It's very easy to collect a set of questions and also obviously the questions that you really are most pressing on your mind. But when you write them down and you have them and you put that notebook on your lap.

while the doctor's starting the conversation, then you can have an interactive conversation and you know you're not gonna miss that question because it's right in front of you. So that preparation phase, very important and that's step one. Step two is knowing the language. I call it language because it's knowing the language if you have a diagnosis, understanding that diagnosis, understanding and knowing how to pronounce it, knowing how to pronounce the names of your medications.

understanding how you ask questions about your medication and interactions and where to find information on your own if you need to. It's about health literacy to the best of your ability, but it's also about educating yourself on your own health and being curious enough and wanting to learn. Like you would learn, let's just say you have a hobby or you're playing chess, but you have to learn the names of things in parts. It's the same thing.

people spend so much focus and attention on other parts of their life. Somebody said, you know, if you knew that you were going to live to a hundred, how do you take care of this beautiful object that's going to live a hundred years, taking care of yourself as if you could live to a hundred years old, if you did certain things to take care of yourself. And I think that's sort of the energy. And that's what I call the language of your own health and caring enough about to learn all.

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things.

That's wonderful. I have a follow-up question. For those of us that don't have a background in health administration, getting onto the wild, wild web, there's so many voices, any condition, and I'm going to get 15 different opinions about what really caused it. What is your advice for vetting the sources so that you know you're getting an education that's going to be helpful, that's valid? What do you look for for markers of, I can trust that this isn't written by Bob in his mom's basement?

all by himself in a vacuum. How do I know that as a consumer?

It's a great question. And I get that from friends, family, highly educated people. It's very overwhelming because there is this big expansive web of information now. So it's about trusted sources and knowing which are trusted sources. It's also about not using Google to be your doctor, using Google for information to inform. So when you ask the doctor questions, you're knowing what you're asking and you're knowing what you need to know more about.

The main trusted sources are any academic medical center that specializes and has a whole department of teaching, research, and patient care on a particular subject. And most large academic medical centers have these departments, whether it's cardiology, thoracic medicine, dermatology, oncology, hematology, all the things that I would start with. Who are your local big academic medical centers and going on and seeing if they have departments?

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and seeing if they do research. And then the second tier would be disease specific websites that are created by associations. Who's doing the most research on this topic? But also the major disease categories, they have a lot of information. For my disease category, myeloprolifidic neoplasms, over 20 years ago, it wasn't that much available, but there was a very newly launched organization.

the MPN Foundation, and they put a lot of effort into patient education and peer programs and explaining who was doing the research on this topic. Overall, it was really scary because there's no cure for the disease and it progresses in different ways for different people, but it was comforting to know that you weren't alone and that

You look at other people, what they did to improve their quality of life and what doctors they use. And it's a national organization with international ties. So for me, it was a great source of information and comfort and knowing who really the most noted doctors were who were doing research in this field.

That's so helpful. Thank you. So step one is prepare. Step two is know the language, understand your diagnoses, and then as you said, you just gave great advice for vetting where to look into it further, how to know if it's a trusted source or not. What's the third step?

third step is questions, because question asking is so important. It helps define what you know from what you don't know. And even when you do know something, you want to talk to the doctor about it. Am I looking at this right? I read this information online. Is this correct? Am I interpreting it correctly? Being able to ask questions and there are no stupid questions. I know people say that all the time, but it's true. And I think doctors do appreciate a patient, not just

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coming with a whole file of information and throwing it at doctor, look, I did all this research, you what do you think? But the patient preparing with the questions and then being able to, at the visit, being able to ask additional questions as the doctor explains more and more. When I prepared my thinking patient planner, I put in general questions as well. And I got this from my research. There has been a history of health researchers trying to figure out

what are the right, they call it question prompts. And I don't know if other industries use that term, but question prompts, meaning if you educated and gave patients certain questions before their appointments, does it make them and help them to participate more in the appointment time? And they studied this and it did, but they started off with, let's give patients 22 questions. Then they did the study. Okay, well maybe really out of those 22, 15 are the most important. And then they ended up whittling it down to seven.

And then they came to three questions. Okay. So the first question is, what are my options? So you have this whole discussion with the doctor, doctor saying you need to do this, this, this. Well, what are my options? And what about the wait and see option? So that's question number one. These questions I'm saying should always be in your toolbox when you come in, because you could always grab these questions. The second one is, what are the possible benefits and risks?

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of each of the options. So as you're going through that discussion, you understand how could this benefit me or how could it harm me? And then the third one is how likely are each of these benefits or harms to happen to me? Because every patient is different. Every patient has a different history, different genetics, different environment, different ages, male and female, ethnic group. It's always about getting down to

Well, how will this affect me? How likely will it be for this to happen to me? And really knowing these questions, and clearly there are even more questions to ask about, you your diagnosis or the effects of medication and all these things. But if you have these three questions in your toolkit, you will be able to participate in this discussion and push the doctor. Because if you don't ask the doctor, the doctor thinks you already know, or you're leaving it up to the doctor to decide.

So valuable. Okay, Dan, I should have asked this at the top. How many steps are in your framework? Okay, all right. That was three. Ask questions. you gave us three wonderful questions. What is step four?

five-step.

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The fourth is participation. So this is when you're actually at the appointment and you're having this discussion with the doctor, you need to take initiative and you need to really share your story. Many people withhold personal information. They call it sensitive information. You may know this as whether you smoke, you drink, you take drugs, lifestyle kinds of issues, whether you were a recovering alcoholic, you've started drinking, most people.

will withhold the information until they feel a comfort level with the doctor. But many times it's so important to share this with the doctor so it can inform, particularly if you're not feeling well, something's off for you. It's really important to share these things. One person gave me this example that he was having these extreme headaches. And until they got to the bottom of why these headaches were happening, he said, well, he quit drinking coffee. And when you've been drinking a lot of coffee and you stopped drinking coffee, so this person didn't share it.

So as soon as doctor said, have a cup of coffee, it's not bad for you. You can have it. has positive benefits. Magically, the headache went away.

Man, I have had those headaches. No wonder he was scared. They're awful

Yes. So I think that having really being engaged and when you write things down, that whole preparation phase and the question phase and all that, then you're prepared to have this dynamic discussion. And in fact, in medical school, they teach doctors about the medical interview process and what that process is. I've always thought when I did my research and I figured out that's where I started, well, what do they teach doctors in medical school that I should know as a patient, right? Wouldn't that be interesting to somebody? I thought that was really fascinating.

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Yeah, I love how your brain works.

So were three parts to a medical interview and they all involve this dynamic process between the doctor and the patient, which really reinforces it. But the first is this relationship building and trust building. And then the second is information gathering, which is a give and take. It's not just the doctor asking you questions. It's you really sharing fully, the patient sharing fully. And then the third is what's called shared decision-making, developing a treatment plan and next steps that

are conducive to what the patient wants and what the doctor feels is important. And it's that sharing of information. This wasn't even introduced in medical schools until about 10 years ago, 15 years ago. Medical schools did not have a course on this. So if you get a doctor who's over 45, 50, they will not have taken a course, but obviously they have been practicing long enough to probably have implemented all of that. But when I discovered this and then I went around asking my doctors, give you a course? Most of the doctors said, no, I never had a

Okay.

But they were some of my favorite doctors, so it didn't help.

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man, emotional intelligence is everything. We do a lot of coaching on that with people in the workplace and everything you're saying is resonating deeply the power of communication, which is really what this is, is intensive on effective communication in this context and how to have that back and forth and broken down so beautifully. So the fifth step.

We have done our job. We've figured out what questions to ask. We've learned the language. We come ready to participate. We're ready to tell the truth when we sit down and know that even if we don't feel like we fully have that no like and trust factor with the doctor yet, go a little faster. It's going to speed up your helping them to figure out what's really going on.

Yes, even if it's embarrassing, even if you don't want to tell them all of the things so they can have all of the pieces. What's the fifth step?

The fifth wraps it all together and that is courage. Having the courage to do the hard things, even when you're not feeling well physically, mentally. Courage coupled with curiosity, being curious about your health and wanting to learn and do better. But courage can be built.

one very small step at a time. If you do a little better each time for yourself, for your own knowledge, for your own skills, it builds and builds and builds until you have this cocoon of courage around you. No matter what, it stays with you. And this was not something that I had before my whole health crisis started. I also had parents that had health issues and family members with health issues. And it was always so sad for me.

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discouraging for me. And that's probably why I had my head in the sand for most of my adulthood until my health crashed. But as I was studying this and how to create a pathway for people, I felt that having this courage and understanding it and defining it was very important as part of this whole process. And like you said, it becomes this sort of lesson and fundamentals of communication and communicating who you are and what you want for yourself. And I think that's how I couch the fifth part of the framework.

as courage.

Dana, this was incredible. What a gift you have brought to people putting this together. I'm imagining you did not get to this without some missteps along the way, this wisdom you were able to put together, without making a few mistakes as a leader. You have a long background in health administration, and we now are going to invite you into the confessional to share your story.

None of us are exempt from making tremendous and impressive and not a great way missteps along the way when it comes to our journey of learning how to lead, learning how to communicate. We usually learn through some pain. Danna, please share. What is your story? What is your confession you came to talk about today?

The last seven years before my health crashed, I had probably the best job I had in my entire life, and it was leading a healthcare organization. And I had 400 people in the organization. And so when I look back now, because now the last two years have been so focused on helping people with communicating better, when I look back and say, well, what was the mistake?

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I always prided myself on being a good mentor to other senior leaders in the organization, people who I felt very proud to mentor and bring up to speed. But the thing that I didn't do was help them focus on their communication skills and public speaking skills. Now that as I look back, I think it would have been really important. I helped them with their writing. I helped them with goal setting.

But in terms of if you're responsible for, you know, department and organization or a professional class of people, to be able to have the courage and the curiosity and the wanting to do skills development. I wish I would have spent time with my senior leaders on sharing with them how important it would be to communicate better in a public setting, whether it's one-on-one or small group or representing themselves in a larger group.

from a professional development point of view and also from a business point of view.

Yes, so critical. Thank you for sharing that vulnerability of going, man, I miss that. know, I wish in all of the gifts I brought them, I wish this would have been part of the package. Understanding the value of communication and curiosity in those roles and how critical it is in every aspect of what we do. Those of us that still have that opportunity. We need to jump on that. Thank you, Dana, for sharing that and.

I think one of the most undervalued areas of skill development is the investment in learning to be not only an effective but a powerful communicator and that it is necessary for anyone that has influence over others. Communicating well is going to be a gift not only to yourself and make your life easier because people are going to understand you with more clarity, but man will the people that you're speaking with appreciate it a whole lot and benefit from it.

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quite a bit. Dana, thank you. I am sure there's people that are already looking in the show notes as they're listening to this to order your book or to order your workbooks. We're going to drop all the links. What is the best place to find you, to learn more about what you do, to connect with you? This has just been a wonderful conversation. How can we get more of you?

Thank you. I have a website that reflects sort of the consulting speaking work that I do. It's called thethinkingpatient.com. So you could find me there, communicate with me through there. And also I'm on LinkedIn. It's Dana E. Sherwin and I post regularly on LinkedIn. I use it as my blog. use it.

purposely to post content about patient physician communication and engaging in health. I cover many different topics. I try to find really interesting things that maybe aren't being talked about, things that people wouldn't normally know, either as everyday people or people representing employers in the HR area. And I post information that I think would be helpful and contribute to the conversation. And all my contact information is on LinkedIn as well.

Oh my gosh, well, I'm running. As soon as I get off this podcast recording, I'm running over to LinkedIn and making sure we're connected. So, Diana, thank you. Thank you so much for your time, for your wisdom, for so generously sharing your framework with us today. And I have no doubt that we have listeners that are going to benefit massively with their health outcomes just from your taking this half hour today to share with us. So, sincerely, thank you for that. All right, listeners, you know the drill.

Thank you, Lacey, I appreciate it.

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Until next time, go manage like a leader. Thanks for listening to Confessions of a Terrible Leader. If you're feeling brave and have your own terrible leader story that you'd like to share, head over to TranscendLeadershipCollective.com slash podcast to fill out a guest application. We'd love to hear from you.

Confessions of a Terrible Leader is hosted by Lacey Nelson and produced and edited by Fixation Point Productions. Music is by Leif Olsen and Mary Skop from the band The Number of Months. Confessions of a Terrible Leader is a free leadership resource offered by Transcend Leadership Collective. If you are ready to refuse the limits of average leadership and join the leadership revolution, visit Transcend Leadership Collective.com to check out our offerings for engaging workshops, strategic planning, and more.

collective tap.

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Thank you so much for listening. Don't forget to like, subscribe, and leave us a review. And until next time, go manage like a leader.