Rethink the Patient Experience

Webinar

Featuring

Tech Mahindra

Description

Ed Marx has a powerful sense for how strategic health system decisions impact patients' lives and experiences. This understanding echoes in his work leading strategic and technical operations at organizations like Texas Health Resources, Advisory Board, Cleveland Clinic, and Tech Mahindra.


We'll discuss how decisions in healthcare make patient lives worse, how they make them better, and what you can do to drive the change your patients are looking for.


Whether your stories come from your experiences as a leader, specialist, or patient, we'd love to hear them.

Edward Marx

Edward Marx

Chief Digital Officer
Tech Mahindra

Tech Mahindra

Chris Hemphill

VP, Applied AI & Growth
Actium Health

Michael Linnert

Michael Linnert

CEO & Founder
Actium Health

1

Transcript


Chris Hemphill:
Wonderful. Wonderful. Thank you. Hey, Hello Healthcare. Hello, LinkedIn. Hello, YouTube. Hello if you're consuming this right now, if you're consuming this a little bit later on on YouTube or however you're getting to us. We are just thankful to have you here. And it's an extremely exciting conversation. Ed has been a good friend of the series. And by series, I now mean Hello Healthcare. We now have a name for it. You can listen to us on a podcast later on as well. But overall, he's come on and talks about digital transformation in the past and consumerism in healthcare in the past. And now we're going to get into something that... All these subjects really count, but we're going to get into something deep here, which is the patient experience.

Chris Hemphill:
For those of us that don't know Ed... Good morning Trang and thanks for the hello, Mike. But for those who aren't familiar with Ed's background, he's been in leadership, in C-level IT, CIO roles at organizations like Cleveland Clinic, Texas Health Resources, and The Advisory Board, and is now chief digital officer for health and life sciences at Tech Mahindra. So we're really thankful to have you back, Ed, and talk about a lot of the research that you're doing on the patient experience, what you know about it from personal experience and overall, more about this book that you're writing and more about what kind of education you're trying to get out to everybody. But with that, anything you want to say to everybody before we get started?

Ed Marx:
I am thrilled to be here. I can't wait for this discussion with you and Mike and I love what you all do with SymphonyRM. So let's go.

Chris Hemphill:
All right. Fantastic. So along with Ed we have Michael Linnert. Michael Linnert is our chief executive officer at SymphonyRM. And his background also comes from personal patient experiences, but also tying in the types of experiences that he's been able to lead in other industries such as finance and telecom and helping to bring some of what these organizations have been doing to create great experiences in other industries, bring that thinking and bring that energy into healthcare.

Michael Linnert:
Thanks, Chris. I'm looking forward to just hand the microphone to Ed. Ed has a unique perspective both as an executive at some of the biggest best systems in the country, but also as a patient now in the [inaudible 00:02:30]-

Chris Hemphill:
Mike, I think you froze up a little bit, but hopefully the internet will be back by the time we get into it. James, thank you for the hello. Trang, again, thank you. Let's go ahead and get started. So Ed, we're enthused that you're writing a book that's speaking directly to patients about how to improve their experiences. It's a shift because there's so many books out there that focus on healthcare policy or healthcare history, but not a lot out there about how to deal with the pitfalls of interacting with a broken healthcare system. Could you talk to us about why you... And Ed is writing his book along with the chief information officer at Mayo Clinic, Cris Ross. Could you talk about why you and Cris came together in writing this and what you hope that patients might be able to learn?

Ed Marx:
Love to talk about this topic. Let me say right upfront before I forget the thought that this book is dedicated to all patients with, it can be patients, obviously any type of patient, but in particular, those with cancer in their families and the clinicians and organizations that treat them. For this reason, 100% of the profits of the book, which will come out sometime next year, 100% of the profits from Cris Ross or I go to Mayo Clinic to cure cancer. The publisher, we have two publishers. One is Mayo Clinic Press, they also will donate all their profits. And Simon & Schuster is involved as well. But anyways, from our perspective, 100% of all the fees, all the money that's made from a book go to curing and kicking the ass of cancer.

Ed Marx:
So that's number one. The reason this sort of came up is both Cris and I, we've known each other for a while. And we, at the time when I was at the Cleveland Clinic, both CIOs of the number one and number two brands in healthcare in the world, and we both were stricken with cancer. I actually had a heart situation before that, which was really weird. And so we're going through the experiences ourselves as a patient. And not just a patient, like we broke an arm, but I mean like life and death type of patient experiences for both of us. And we really learned a lot. And we realized that even though we were at fantastic organizations and they absolutely are fantastic organizations, so it's nothing negative about either of the organizations where we are or came from.

Ed Marx:
We realized we're still falling short when it comes to patient experience. And if we're falling short at the world's most foremost organizations, what about other organizations? And so we really thought, hmm. And then the other thing we thought was, what have we done? How have we changed as people and professionals having had this experience within our own organizations? And so as we thought more about this, we came together and we were like, we should write a book on this. And that's sort of the evolution. But Chris, there's one more twist. I hate to be long winded, but let me add the additional twist to this book. And maybe it'll spawn some other questions. There's plenty written about patient experience. Okay. So it's a hot topic, but has been for a long time and not much has changed.

Ed Marx:
So we are writing, we flipped the script thanks to people who are helping us with this book. This is being written for the consumer. This book is written to the patient, not to healthcare. I think sometimes we got ourselves in a little bit of trouble. We kept writing things, whether it's books or things like that for healthcare and healthcare, we haven't responded as quickly as we should. So we're writing to consumers. So this will be a retail book that you'll find in all of your bookstores and things like that. And that's a major twist to the perspective in which this is written and to the audience. So that was a long answer to your question, but I want to make sure I get that all out there because that might frame up additional questions from the audience.

Chris Hemphill:
Sure thing. And excited to hear about that direct to consumer approach. And I think the audience might be excited too, because like you said, a lot has been written about the patient experience. A lot has been written about what's possible for healthcare, about what's attainable for healthcare. Yet it hasn't moved fully in that direction. It's been really widely distributed how health systems have made these forward moves to help these consumers. So a lot of the people here, I think that a lot of people get excited about the possibility of what can open up and we're in a time right now that that is ripe for probably the type of change that you're looking for. Competitive pressures are increasing. People are becoming more demanding of the types of experiences that they want. And hey, there's a book coming out soon that will help them guide that demand too. So excited about all these things going on.

Ed Marx:
Yeah, Chris you're right. From a competitive point of view, it used to be sort of the right thing to do, to have a patient ombudspersons or sort of a customer relations departments, or they were called a lot of different things. They'd been around for many, many, many years, which we just added the word patient experience to it in the last five years or so. So the whole thinking has been around for a while, but you didn't really have to do much because if you were the hospital in town, people didn't have alternatives, but today that has flipped as well. There's a tremendous amount of disintermediation going on. You've got, and I know this isn't the focus. So I'll just say this really quick, but just to level set the whole audience why this is so important.

Ed Marx:
Well, number one, it's so important because it's the right thing to do. Number two, it's really important because it helps in the healing process when you get patient experience right. But from these other sort of from a business perspective, you now have Amazon coming into your space, your city, you've got Walmart, you've got CVS, all the whole retail, high-tech, and then you have payers who now, the majority of physician-owned practices are in a controlled owned by payers. So complete change. So now it's a matter of survival. I call it survival of the digitalist. You have to get this patient experience thing right. So from a healthcare hospital centric point of view, provider point of view, you have to nail this. So it's a of matter of survival. That's kind of secondary for me.

Ed Marx:
Again, for Cris and I, it's in our heart just to help others like we've been helped to make sure they have a great patient experience.

Chris Hemphill:
So let's dig into what's the foundation, what's the guts of the book that we're talking about here. So at the beginning of the call, I mentioned Cris Ross leading IT operations at Mayo Clinic. And Ed, your background with Advisory Board, Cleveland Clinic, Tech Mahindra, all these different organizations. But on top of that, I know that you're doing a lot of research to get to these points too, because I named a lot of large institutions, but there's all kinds of institutions that people are going to be interacting with, big and small community organizations, federally qualified health centers, et cetera. So since we're thinking about rethink, it's called rethink the patient experience. And I think it might be a good place to start to get into how you define the patient experience.

Ed Marx:
Yeah. So definitions are always tricky and none of us consider ourselves the authority on defining patient experience. What I always tell people in organizations is that you need to define it in a way that makes sense for your organization, but everyone needs to agree to it so that when you use the word patient experience, everyone in the organization understands exactly what that means. So I don't have a clever definition. For me, and I know with Michael, we we've been chatting. We believe we're always in a patient experience. That you have, like if you said, "Am I a patient?" I say, "Yeah, I have a patient of Dr. Flesher, Mark Flesher. He's my PCP and has been for quite some time." So I always maintain that relationship because I'm all about wellness and health and stuff like that too. So I always think of myself sort of as a patient.

Ed Marx:
Other people would define, or organizations would define patient experience as an episodic sort of way and what's your journey like? So it's a sum of, I think the one thing that everyone would agree on, it's a sum of a lot of different parts and it's important that each organization define it and make sure there's buy-in to that definition and that people own that definition. But yeah, that's sort of my perspective on it.

Michael Linnert:
Ed, you mentioned that you're, in the book, you kind of flip the script. What are the key, if it's okay to share them, what are the two or three kind of key takeaways from the book? What are the things you learned as you did your research and flip the script?

Ed Marx:
So on the research part and how we came about with a lot of the ideas, we know, Cris and I both come from big health systems and not everyone does. We get that and we know our patient experience while very important and intimate to us doesn't scale to everyone. So we realized that. So what we did is some research. It's definitely not a research book, but we did do some research. And also we did a lot of focus groups. So we did focus groups with patients who weren't cancer or heart patients but had some other tragedy or difficult things, challenges happen in their life and in their journey. And so we did a lot of focus groups, including special groups that may have not had the attention in healthcare that they need to. And maybe that's something we can touch on a little bit later.

Ed Marx:
And then we also did focus groups with healthcare executives from other organizations that aren't multi-billion dollar academic research teaching organizations. So we met with individuals from federally qualified health centers to 100 bed hospitals, to 300 bed hospital, the whole continuum. We tried to get everyone's input and we tried to see everyone's perspective. And it was quite, quite interesting the different ways that patient experience is defined, because that's a question we asked as well. And again, it goes all across the board and what their challenges were and what is some of the unique things that they're doing. So we did that. So it's not just two person's opinions. Because we realize also we are in a certain demographic that doesn't scale. Right? So we understood that.

Ed Marx:
So we purposely went out to get other demographics and make sure that we captured full representation of the populations in which we serve. So with all that, yeah so some of the key things, key takeaways from the book, some of these may not be surprising, but it actually, we have evidence around it, which is really interesting. A key factor for a quality patient experience and outcome is not your sort of... Because sometimes we think this, like if you have a really good attitude, you'll make it better than if you had a bad attitude. I wish that were the case. Right? Because that'd be easy, just have a good attitude. I'm going to kill this thing. And it turns out that's not much a differentiator, but resiliency is. And resiliency is a little hard because it's not like something you can say, "Have a good attitude," and you could kind of probably work yourself up to having a good attitude.

Ed Marx:
But resiliency is a lot more subtle. It's more like caught than taught. So resiliency was really key. There's correlation between those who are more resilient tend to have a better outcome. How do you deal with adversity? So it's something that can be caught. And so we talk about it in the book. It's a little bit different because it seems so theoretical. Again, it's not like a skill that you just practice, practice, practice and you get. But if you could practice resiliency in your life, how do you deal with a traffic jam? How do you deal with... I'm giving you a very simple example, but how do you respond and rebound? Really makes a big difference. That was key. Another one is that you could have a great patient experience in a bad hospital and you can have a bad experience in a great hospital.

Ed Marx:
So just because you're at a marquee brand as an example, or it could be a small hospital that's really known for their consumer focus, doesn't mean that you're going to have a good or bad experience. So it's helpful if the organization has a culture around patient experience, but it's not a guarantee. And then maybe one other is that having a model to help your patients. So again, we're writing this to the consumer. So I'm sort of flipping the words a little bit to answer the question. But if you have a model that you can help your patients with, that will help them be more successful. So in the book we do share a model for the patient. And we can go into that a little bit later if you'd like, but we have this model. There's like five pieces and parts to this model.

Ed Marx:
So hopefully people who read the book will come to your organization with this model already. But if they don't, there's nothing wrong with you as an organization saying, "Hey, here's a model, you can adjust it. It's not hard and fast, but here's a model and we can help you through some of these steps." So those are like three takeaways from the book. You get this model that can help, you can really focus on resiliency for yourself. And then realize, from both a patient and a hospital perspective that just because you're going to a marquee brand or a non-marquee brand doesn't mean you're going to have a good or bad experience.

Chris Hemphill:
So yeah, that really stands out. I think a lot is resonating with the audience as well. I'm really thankful to hear from folks like Lacey, who agrees with this mental model approach. And [Darrell Schmucker 00:17:23] a little bit earlier shared his own experiences as a cancer survivor. And ultimately how important it is to focus on the consumer experience and how to arm people on how to interact with this healthcare system. A question that comes to mind though when you mentioned resiliency, do you have any kind of stories around, how do you identify resiliency within yourself and what is a step to increase that? Because I imagine not only important for healthcare purposes, but also a lot of other things that people might be trying to accomplish.

Ed Marx:
Yeah. I said it's caught not taught so much, so it is a little bit difficult, but we are going to be very practical in the book on this particular topic because it's so important. So I just think about my own family. So my dad is escaped a concentration camp during the Holocaust. The rest of my family got Gas and Auschwitz. And then my mom went through... My mom was also in Germany at the time. And she was bombed every day and her dad was in the German Army and got killed on the Russian front shortly before the end of the war. And then she had a hardship growing up. And then even when I came into the world and with them as my parents, my mom suffered terribly from severe arthritis, rheumatoid arthritis and some other maladies, ultimately cancer for several years.

Ed Marx:
And so I just kind of learned from my parents. They never blamed someone else like, oh, woe is me because I got put in the concentration camp, lost all my family. Or my mom never complained about why is she sick? And all those kinds of things. I just saw them as resilient. And so I sort of learned the same thing. And then when I came to the United States, we came when I was 10 years old. And I'm giving you kind of maybe sort of silly examples, although they're not silly because they really develop that resiliency and try to get to a practical point right after it. But when we came over, we were German all the way through and through. And we came over, we were laid a hose in, like you think sound of music. That's how we actually dressed here in the United States.

Ed Marx:
Kids made fun of me, man. I was picked on merciless... I can't even say the word properly because English is my third language. And so I had to be resilient too as a 10 year old junior high kid to like, all right, how do I rebound from that and still become successful and not let that ruin me or anything like that. And I did, and then I had a trouble and when I went to the army, I was a combat medic averse and eventually became a combat engineer officer. And when I went to basic training at age 17, the first time I ever saw someone that wasn't white, it was the first time I ever ran into people that were different than me. And so I almost got booted out. So I had to be really resilient [inaudible 00:20:23] learned, it was sort of caught.

Ed Marx:
And so I think that helped me. So when I had this heart attack, it's like, how can I have a heart attack? I'm literally top 1% in my age group for my sport as well as for my health according to the statistics given to me by the clinicians. And it's like, why am I having a heart attack? Okay, well, I'm going to bounce back. I'm going to be resilient. The cancer too. How did I suddenly get cancer? And really, with prostate cancer, they don't do stage three, stage four, but it's about the equivalent of stage four cancer is like a hot way. But I was like, "No, I know I'm going to conquer this. This is just a bump in the road." It wasn't the attitude, although I'm sort of expressing the attitude, it was really the sense of resiliency.

Ed Marx:
So I just share with you my journey so you can kind of maybe relate to what I'm saying in some way these different examples. So in life, I think, and again, this is really hard because it's not a scale that you can do 1, 2, 3, or a cookbook, but it's like, start watching people who bounced back, who are resilient and start absorbing their life lessons, or if you know them personally, like hanging out with them and sort of learning on maybe their mental, how they handled it mentally, what they might've said to themselves, how they bounce back, didn't allow them to get themselves in a funk. Not blame people, but take ownership.

Ed Marx:
And that goes to the first part of the model, which is really around self and self-advocacy. And that's really key because, and it goes back to resilience. So that's why we really hit on resilience because you can't blame others. You can't spend all this time in this funk, but you have to take ownership as like, all right, I got this. I got this heart attack, or I got this terrible prognosis or diagnosis and all right, so I am going to take a hold of this and I'm going to do something with it. And I'm going to bounce back. Again, it's very close to attitude, but it's different. Hopefully I'm able to articulate the subtleties for you. So it's really important that you become your self-advocate, Chris. So hopefully that answers the question. It's a tough one. Resiliency is a very tough one to define.

Chris Hemphill:
Yeah. I thought it was a great answer and there's a theme around it. Like, hey, it's not something that you can just go on Buzzfeed and look at the list of top five things to do. But you created a theme about creating an environment for yourself or surrounding yourself with other people who are resilient. And I have just a little bit of a thing that people could try, this really helped me out was, I do a lot of runs, trail races and stuff like that. But if you flip the script and actually volunteer at like a trail race or a marathon, then what you end up seeing, especially like when you're providing aid or providing food or what have you to people that are 20, 30 miles into a run and you see them in that state, and there's something that just rubs off from you if you're doing that.

Ed Marx:
That's a great example. And that's what I mean by caught not taught. That's a great example. The other thing you can do, I talk a lot about self-advocacy and sometimes you can't advocate for yourself. You're really sick, you're unconscious. So in the book, the second part of this model is what we call the village. And it's really important that you develop your village before you need your village. And they all work together. Because if you have a village, you're a pretty good self-advocate. If you're a self-advocate, you've got a village. If you're not a self-advocate, you probably don't have much of a village is what we noticed. It's not exclusive, but just kind of notice it, then you're really in trouble. If you depend on your hospital or health system to champion you through patient experience, it's going to be suboptimal.

Ed Marx:
We all know stories. I could tell you stories. You can all tell stories of how challenging it is. Right now I'm dealing with my dad. My dad is 87. The Holocaust survivor. We want him to live as long as he can telling his story about escaping the Nazis. And so he went through this big surgery, cancer and like three surgeries in one. Neurosurgery, brain surgery, cancer, skin. It was huge for an 87 year old especially. He's at a really good system, really good health system. But I'm telling you, if I wasn't there, or my brother and sisters who are also in healthcare, if we weren't there connecting the dots, doing the care coordination between different surgeons, between the hospital, between the lab, between the radiology, I cannot imagine. I would be careful. I don't want to say that the outcome would have been tragic, but I think we do get tragic outcomes for lack of good patient experiences. I have no doubt.

Ed Marx:
And I just think through my dad's situation right now, I just came back yesterday, actually from where he is helping him. So my brothers and sisters, we all take turns. And fortunately, he's doing much better and he's on the road to recovery. But I'm telling you, if we weren't there connecting those dots and advocating for him... I'll give you one quick example and then we'll move on. I want to talk a little bit about how you do the village though, because I think it's a great takeaway for anyone listening. So he had an appointment for a CAT scan for his brain two weeks post-op and then to see the neurosurgeon. So we go and they're like, "Oh, you're not on the schedule. You just go directly to the neurosurgeon." So I go up to the neurosurgeon and I'm wheeling my dad around. And they're like, "We need the CAT scan because we can't see inside your head."

Ed Marx:
And so most patients would have left because their next available appointment is in two weeks, but I know enough to go down there and say, "Hey, we need a stat." And they did it. And then had that not worked, I would have probably tried to pull the card. "Hey, I work in healthcare and I'm from here or there." And try to do that. And that didn't work. I knew who to call at this health system. I could have called the CIO. I could have called the CMIO. I could have got... But most people, 99% of people don't have that. So it's so critically important. So the village. So this is another practical. Mike, you asked earlier about some key takeaways, maybe this was even one of the more important ones is to develop your village.

Ed Marx:
And I'll give you an example. So my wife and I were thinking, hey, are we surrounded by other couples who can help us make us better, make us a better partner to one another, make us better people? And yeah, maybe if someday something goes wrong, they're there by our side. And we realized we didn't really have that. So we said, we're going to develop, we call it the Texas 10, which actually has since gone to 12 and includes someone from Oklahoma City. So I don't know what we're going to do with the name Texas 10. But it's called Texas 10. So we identified five couples that we thought could help us get to the next level in our journey as people. And so we reached out to each of them and we said, "Hey, this is our plan." And they were like, "Oh my gosh, I love this. This is perfect."

Ed Marx:
And we made sure it was diverse. If you saw a picture of us, there's like three white people. And then everyone else is from other cultures, from Asia, from Africa, from other parts of the world and they speak different languages. And so it's this great eclectic mix of different religions, a great eclectic mix of people who have our back, who are taking us to the next level. So I guarantee you, in fact, yeah. In fact, I know that like when I was going through my situation with cancer and having this radical prostatectomy, that they were there for me, they held a party before I left. They prayed for me. They cared for me while I was going through it. They cared for my wife. I can't imagine going through this journey without it. So when I described this one time to someone, this is how we got the Oklahoma couple. It's kind of funny.

Ed Marx:
These two doctor friends from Oklahoma, they heard about Texas 10. They were like, "We have to be in that. And we'll drive down to Dallas where most of these people live and we want to be part of this community." And I'm telling you, you have to have that community because sometimes you can't advocate for yourself because maybe the weight of your diagnosis is so heavy or the burden is so heavy, or maybe your incapacitate is so heavy. You need other people. So it's really important that you develop this village. And I don't think most people have it. Because if I said, "Hey, tell me the four, maybe for other people it won't be couples, but four individuals or six individuals that are right there for you. List them out."

Ed Marx:
And so in the book, we actually get practical tips, like write them down. Contact them. Create community. So we actually meet every two weeks. So during COVID, it was all virtual. So we got on a Zoom call. We all had our favorite drinks in hand and we'd go deep, really super deep conversations on everything, contemporaries, some maybe older topics, hard topics. Again, there's no time to go into all the detail, but I think you can get to where I'm headed. These are deep, deep, deep relationships, and most people do not have them. And so it's really important that you have it because when you have a health crisis and we all will, you need to be surrounded by people who will love on you, care for you and advocate for you when you can't for yourself. So that's just one practical example of this model.

Ed Marx:
So make sure people can self-advocate and what that means and how do they do it. Make sure they've got a village around them that's going to help them. And let me just say this one last thing, Chris, and I'll stop talking. Because I'd go forever because I really am a big believer because I've seen it work so many times, including myself, is your family is not always your village. All right? So if they are, that's good. So I'm fortunate that I can count my family. And I'm talking maybe your brothers and sisters, your parents, maybe nieces, nephews, but not everyone can. So don't default to an answer that says, "I don't need that, Ed, because I've got my family." Okay. That's good. But in addition to your family and for many people where family, for whatever reason, strained relationships and those sort of things, aren't necessarily those sort of individuals, then you supplement with the others.

Ed Marx:
So have both ideal situations, you got in your village is family and these other relationships, have both, that's the best. But if not, you could definitely be very intentional on developing those type of relationships I just described.

Chris Hemphill:
I wanted to comment... Well, first of all, Ed, thank you for sharing all those stories, because I think that when we hear about the types of things that we need to do to be able to cope with the challenges of the healthcare system, it highlights not just for the patients, what they need to do, but also to healthcare leaders who are also very often patients, what are the specific things that we need to address within the system. And I wanted to thank the folks in the audience as well, especially Trang Do shared a story about how a little bit earlier when her father passed away, it was difficult to share the last moments of that experience within the healthcare system.

Chris Hemphill:
But I want to dig into kind of the result of a lot of things that you're talking about and the fact that there are all kinds of, within this audience, there are people who are change makers. There are people who are leaders within healthcare. There are people who have influence or help make policy. So if they were to sit down and read this book and they're looking for that type of inspiration or wisdom, what kind of change or what kind of work would you hope that this book inspires people at that leadership level to do within healthcare systems?

Ed Marx:
Well, first I'm sorry about the individual whose father passed and didn't have that time together in person because of COVID. So we did add a chapter in the book, it's in the agenda. I don't know what the title's going to be, but it's going to be like, hey, listen up healthcare people. Because again, this is written to the consumers, but we realized that there might be a few people in healthcare that might want to read it and figure out, okay, based on all of this, what can we do better? So one thing will be the reiteration of the model. And it doesn't have to be our model. Again, we receive no financial benefit from anyone adopting our model, but it's a model and maybe there's a better one out there.

Ed Marx:
Or maybe it's just a good framework that your health system can use, a hospital can use and make it your own. Maybe if this doesn't make sense, maybe change words or change the model or whatever. It's a good starter set. So empowering your patients, because a lot of them don't know. They don't know that maybe they should cultivate strong relationships with people that end up... One of the benefits of that is it could help them. They don't know about the self-advocacy. They don't know about the third thing that we talked about, or when I talk about the model is the team. And the team is the exact same thing as the village, which is again, your family and your friends plus the clinical team. And that they can be involved as part of the clinical team and make decisions.

Ed Marx:
And so a lot of health systems are starting to do that, right? Shared decision making. So again, I'm just answering your question, Chris, the first thing is have a model and here, you can adopt our model or change it however you'd like. And then the second thing, and it kind of comes out of the model, is this concept of making sure the patient has a voice in the clinical team. And if the patient can't for some reason, include a member of their village. A great example is a couple of days ago, I pulled together all the care coordination people at the facility where my dad is and included, one of my sisters is the official representatives from our family. And so included her in that conference that we had. And then we kind of have input into the process and what are the best next steps.

Ed Marx:
And so some hospitals are doing that already. But we take it one step further. And when I talk about patient advocacy, we're trying to empower, I hate using that word, but we're trying to empower the patient to say, you can't take charge. So I'm going to give you some practical examples. And so hospitals have to be comfortable with this. So back to your question, Chris, what are some things you could do? And that is gain comfort with allowing your patient to lead. So Cris would give you an example how someone came in and a clinician and wanted to, it had to do with the NG tube and doing a certain procedure. And Cris said no. Not going to do that. And he gave the reasons why the clinician was insistent and most patients at that point, even before that point would have capitulated and allowed that procedure to happen.

Ed Marx:
But we had to respect, the clinician had to respect the wishes of the patient. And that's indeed what happened. Another example is where, and I don't want to get too specific on this example, but it's a real example where the clinicians will do anything and rightly so, it's part of their oath and why they got into it. They'll do anything to save your life. But then the patient may have their own wishes in terms of quality of life and there's a trade off. And so the patient may say, and again, this is a real example, but I can't get too specific. The patient would say, "If you open up and you find the X, Y, and Z, just close me back up and I'm going to just live the rest of my life however long that is. But if you only find X, Y, go ahead and take out X, Y.

Ed Marx:
But I'm not going to walk around or not be able to walk or have certain bodily functions or something like that if that's what the journey ends to be." So let the patient make that decision. And I think in the past, patients are so afraid of the white coat and no matter how much even the white coat person may say, "What are your thoughts?" And all kind of stuff. I think it's more than that. It's really telling the patient, "Look, this is your life. And you're the one that has to live it after you leave our facility." So we will give you counsel on what we think is best, but ultimately, they've got to make that decision and own it. And that helps with resiliency down the road with the outcome as well.

Ed Marx:
So that's really important, but we still have a culture today that largely is, "I am the clinician, whatever I say is right." And we all know examples where that's not the case, where someone may have a diagnosis of X and had you followed that and not questioned that, you would have done something radical that you didn't need to do, but you challenged them. And so we encourage this whole concept of challenge, respectful challenge. And so, again, back to your question, Chris, trying to bring the answer back is you need to help make sure in your organization that you allow for respectful challenges. Because we heard all sorts of stories in the focus groups were respectful, challenges were made and the clinicians just created a really ugly situation as a result.

Ed Marx:
So it's a cultural shift that needs to happen. So that's another thing. The third thing, and this is just general for anything is radical leadership. We tend to sit around in these meetings and we don't want to rattle the cage. And so we might know what's, or have a great idea for patient experience. And we might not say anything because four out of five of our peers want to go this direction. And so we just placate and don't take that radical leadership approach. And so I say, even if it costs you your job, I say, be radical in terms of advocacy. This is not just like a nice thing, hey, we've got someone here with the title of patient experience. So they're suddenly the person who can only make these decisions and direct the future of the organization when it comes to patient experience. I don't believe in any of that.

Ed Marx:
I respect the person of course, but they don't own all the wisdom and things. So I would just say radical leadership in terms of really advocating for the patient and making sure that all of their needs are addressed and we do change the culture. Because again, Chris, whenever people push back on me, I say, "What have you changed in 20 years?" "Not much really." So we're still talking about it. We're still behind other industries when it comes to experience. So it's not working fast enough. So be radical in your passion and your pursuit to help change the culture of the organization. That's what happened with Chris and I. We were like, "Oh my gosh, we need to make more change. We're going to try to impact more change because we've lived it directly. We've heard the stories for years, but now it's us. And if we struggle, then that means that a lot of other people are struggling."

Chris Hemphill:
Ed, this conversation is going great. And there's so much engagement, so many questions. I feel like one that really stood out, like Lisa Coleman was asking about patient education overall. And it feels like there's kind of an alignment between what you're talking about in terms of patient advocacy, like from the healthcare village perspective and the patient. Do you feel like the patient education piece is a linchpin role in helping people better manage their care and create those better patient experiences?

Ed Marx:
Yeah, absolutely. That's a great comment. And yeah, I wish I can sort of see, I don't want to be distracted, I could see the feed coming down as a lot of good interaction, which is great. Because I hope that all of you are even more passionate than all of us to make change happen and then it will. So yeah, patient education, we cover that as well. That is definitely something, back to your question, Chris, that organizations can do to help empower the patient, help empower the village. So it's really important. But again, encouraging... Right now a lot of organizations suddenly discourage patients from doing their own research and education because there is a lot of junk out there on the internet. And we think we're protecting them. But man, if they have an interest and are motivated to go do some research, let them go do it.

Ed Marx:
And even if they find something that's not real and you have to address it, that's fine, but at least they're engaged and they're caring and you don't want to put a stop on that. And there is a lot of valuable material out there from a variety of health systems and various companies that can be very helpful. So you don't want to discourage that. So you do need to provide them with education, but also let them know that they can go beyond what you're providing them and maybe you give them... Mayo Clinic has great content, Cleveland Clinic and others have great content and just encourage them to do some of that research on their own as well.

Chris Hemphill:
Michael, I'm wondering if you had any thoughts on that as well.

Michael Linnert:
I think Ed's doing amazing. I don't want to grab the microphone here. I think Ed, thanks for all the comments, the insights. I'd love to have you keep going. And I saw one or two questions, Ed, about what role can the health system play in helping cultivate villages for people who don't have them? There's obviously online forums, there are social workers. Do you have any thoughts on that?

Ed Marx:
Yeah. It goes back to the education. And you can, again, whether you use the model that we will be sharing with the world or some other hybrid, yeah, I think you can definitely encourage that. And yeah, I think the focus groups and things like that are good as an alternative, not as a full alternative though, so they're a good supplement, but not quite the village that I have in mind when I speak to you all about the village. And that's why if they don't have one, that's why we're writing the book for consumers because we want them to think about these things and take action before they ever need it. So once they're a patient and they're in tough situation, it's going to be hard, not impossible, but harder to start building on that village. So we encourage you to try to... Hopefully with all the patient experience tools that are out there and digital front doors, hopefully you're reaching your communities already just for wellness and things like that.

Ed Marx:
And one of the topics could be, you could have a webinar or however you want to do it, hey, on this whole concept, whatever language is best for you to use, but how to build this village and then give examples. But again, these are groups of people that are doing real tough conversations because we realized when we started to build this village concept that it takes what, I don't know, I'm making this number up. 10 years to develop really strong, tight friendships. And so we were all thinking like, how do we accelerate that process of deep connection? So what we did is every two weeks, which I mentioned, we meet, we spend an hour and a half together and that's outside of maybe informal times that we have together or maybe two couples or with each other or whatever.

Ed Marx:
And our conversations are deep. They're about death. They're about the worst thing that happened to you, and people might share, I won't go into it, but very deep tragedies. And you get to learn people really quick. We talk about contemporary racism, social equity, really deep conversations that have accelerated these relationships to where they're super tight now. We don't all agree on everything, we have a very eclectic background I mentioned. So anyways, yes, you can help your populations, your cities, the people that you serve by encouraging they develop these sort of relationships now before they ever need it. But definitely the focus groups are good, hanging out with others like me is good, but then the only downside, but they're very good.

Ed Marx:
So I'm not saying don't do it, but I'm saying the reason you want the village, the only downside is that they're all in the same situation that you are. And so you want to be also surrounded by people who aren't in your same situation for different perspectives and different strengths.

Chris Hemphill:
We're actually well over time, I almost doubled the time, but the conversation's so engaging. There are so many questions that I would keep going for two hours, but I wanted to throw... So Lisa, respond to Lisa Coleman with regards to patients who end up doing their own research and potentially end up in the wrong place. It's a big risk, a big threat that I see and agree with. And I just wanted to point out. We recently did some research at SymphonyRM conducting a survey across 1,200 patients. And one of the questions was around whether or not that patient had heard from their provider about COVID-19 of all things. So the unexpected result was that only 50%, around 50% of patients had heard directly from their provider provider about it.

Chris Hemphill:
The troubling part about that is that one thing that we noticed at the onset of COVID-19 was that click-through rates on emails, click-through rates on websites, visitations to healthcare websites and things like that went up significantly. So it's telling that people have been desperate, people are often desperate for some source of information somewhere. And there were a lot of health systems that were extremely proactive about it, about bumping up their communications. But at the same time, there were other health systems that, oh, we have this scary crisis. Maybe we should dial down our communications. Well, now it's kind of illustrated that there's a big cost to dialing down these communications. And basically that there was a word, I forget the company that uses word, but they said infodemic. We have a pandemic and an infodemic out there.

Chris Hemphill:
And I think it's important to look at the healthcare system as kind of a communications arm to consistently get the message out there, get the right communications out there. So yeah, people are going to do their own research, but if the health system is constantly putting out information about the right choices and the evidence and research backed concepts, then hopefully there's an opportunity to take an edge in this infodemic that we're kind of fighting too.

Ed Marx:
Good point.

Chris Hemphill:
But wonderful question, Lisa. So to wind things down, I think a lot of the reason that a lot of people are here is because a lot of people are focused on, I want to grow the consumer experience. I want to do the right things. I want to make sure my patients are heard and advocated for, but they run into blockers such as well, it's a very complex problem we're solving, or it's disjointed. The technology's not there yet. All that kind of stuff. We've heard that stuff for years. And as you said earlier, there's been a lot of stuff written about it, but the needle has only very recently been moving forward and not by enough.

Chris Hemphill:
So what would you say have been the real blockers? What has blocked people from being able to drive this innovation and how, for these motivated enthusiastic people to overcome it, what can they do to overcome these blockers in their organizations?

Ed Marx:
I would say that I think the tools are there, like what you all do in knowing your patient, giving them choices. Just think about your experience in other industries. And we can replicate that in healthcare. There's no doubt about it. So it's not really a technical thing. There's great solutions out there and you all do great work helping organizations with this. So some of that, it's a really cultural... It's a lack of bold leadership. I know you asked me these questions, Chris, you know you're going to get sort of heretical answers from me. I don't mean to hurt people's feelings or anything, but that's what I've seen. That's what my experience has been is we have too many points of no in organizations and too much fighting within organizations.

Ed Marx:
And so so we might have this great idea for patient experience but the CFO disagrees, or the chief strategy officer disagrees, or maybe a key clinician disagrees. And so we don't move on it. Or by time, you have this great idea for patient experience. And by the time everyone gets their cut at it saying, "No, no, no, no, no," you're then left with just this little bit of improvement, incremental improvement. And I think that's what we've seen. I think we've seen incremental improvement but nothing major. So I think it's bold leadership where at the CEO board level, it's like, we need to learn from however it's decreed. We need to learn from other industries, pick whatever, pick Starbucks, whomever.

Ed Marx:
Starbucks knows me better than my health system does. So that's why I say Starbucks. So whoever is the right, Amazon, or you've heard them all, but empower someone to make those decisions. And of course, you have to be collegial and work with others, but not to the point that it becomes impotent. So we create these structures, right? Chief patient experience officer, or all these structures and they become impotent. Because again, we all, culturally, we just strip away all the ideas and so nothing happens. So long-winded answer to say, bold leadership is probably the most important one because you got to break through these cultural barriers. I wish I could be more practical, but that's the biggest single one.

Michael Linnert:
Well, Ed, you said something there that I think is really powerful and overwhelming. So when you say Starbucks knows you better than your health system, Starbucks has probably two to three orders of magnitude less of data about you than your health system. So it's not that the health system couldn't know you better, it's that they haven't figured out how to convert all that into making you feel known better. And that is a challenge.

Ed Marx:
I tweeted one time just as an experiment, I don't know if, Chris, I've mentioned this before or not, but I tweeted one time. I said, "American Air," because I fly American. "American Airlines knows me, [inaudible 00:51:39] knows me, USAA, which is a financial services organization knows me, but my healthcare..." And I'm not going to tell you who I tagged, "Do you know me?" And I got responses from everyone except for my healthcare organization. And it was funny. Even Brawny. I remember one time there was something with Brawny, we accidentally ordered, this was during the toilet paper crisis. And we accidentally ordered. By the time the order came in, we ordered eight cases instead of eight rolls or something. I can't remember.

Ed Marx:
So I put out some funny things about Brawny and Brawny responded. Anyways, these other organizations know us, but healthcare doesn't. And Michael, that was a great point. Healthcare should know us better than anyone. One, because of the sanctity of our health and wellness and reaching out to us at our deepest, darkest hours, typically when things aren't well. And they have all the data, but for whatever reason, we haven't... Well, for the reason we saw at the very top, we didn't have to do anything, so we didn't do a whole lot. But I think we're forced to change now. So that's the good news on all these new dynamics in district to mediation that's happening is you're forced to change. If you don't change, you will be assimilated.

Chris Hemphill:
You will be assimilated. That's giving me Star Trek vibes. I've got to tell you, I saw that tweet. I'm not going to name any names, but I just dropped your Twitter handle down. For folks that aren't following Ed on Twitter, follow him on, LinkedIn as well. But on Twitter, you get like a bite-size every morning. I don't know if you're doing this on a timer, Ed, but every morning I wake up to a brand new inspirational but challenging tweet and I love it. So strong encouragement for everybody to follow Ed on Twitter. So Ed, as we get into... There's a reason you wrote the book, there's a reason you and Chris got together, and there's a reason that you even came on and spoke with us today knowing who would be on air and listening to us.

Chris Hemphill:
And I'd just like to finish things up with knowing what you think after this conversation, what should people think about or what should people kind of learn about over the weekend now that we've had this conversation? What would you say would be a final thought you'd want somebody to take away from this?

Ed Marx:
So a real tough one is we have a moral and ethical obligation to do something. Because we know, we're actualized in the sense that we know how important this is. Otherwise, we wouldn't all be on this call. We probably have some level of influence in our organization. So we therefore have an obligation to do something. And that's how Chris and fell. I was like, oh my gosh, now that we've had this experience and know this, we can't hold onto it and just keep it to ourselves or just within our organizations, we got to share it more broadly. We got to make things happen. So I would just say to you, because we are all actualized. Again, just by the fact that we're here, we realize how important this topic is, that we each go out and do something.

Ed Marx:
I don't want to do this rah-rah, sort of like this motivational thing. So that's not my intent, but I just want to say, if we can't make it happen for all of our brothers and sisters and our parents and our grandchildren, all that kind of stuff, who's going to do it? Who's going to do it? Is some person out of the sky going to come in and do it? No, it's each one of us on this call. And maybe our influence is this much or this much, but even if we just help attend patients in our organization or 100 patients, it can literally, and we alluded to this earlier, save someone's life. And if not, at least give them the dignity of death.

Ed Marx:
That's the other thing we didn't touch on, but patient experience is, yeah, I want to save people's lives. And we gave an example on how sometimes if you are not that self-advocate, you can lose, but also ensure a great experience. Yes. But also a great experience in the dignity of death. I think everyone deserves that. So we're in the know, so let's take action.

Chris Hemphill:
I appreciate that. And I appreciate that it's not just a rah-rah speech going on into the weekend because their perspective, the angle that you're coming from is being a healthcare leader, working with another healthcare leader, major health institution. And there were experiences that were crushing and you mentioned things about experiences going on now that like if your family and if the village wasn't established, then it could be a much worse outcome. So I can't thank you enough for coming in and being so transparent about these experiences.

Ed Marx:
And the last thing, Chris, since you mentioned the village, go and do that list. I challenge all of you. I don't know what the magic number. For us it was a Texas 10, for you, maybe 12 or five. And it may not be couples or maybe some single, some couples, whatever. It doesn't matter. I would just encourage diversity. And then reach out to those people and ask them to be in this sort of relationship. And have your first meeting, lead those meetings, get deep and it'll change on many levels, not just patient experience, but it'll change your life in many ways.

Michael Linnert:
Well, Ed, I just want to add, I love the way you said that. Chris was talking about from some health systems, the vacuum of communication, right? I can't tell you how powerful it would be or would have been in the past if a health system had reached out to me or a family member and said, "Hey, a critical part of your care is your village. Make sure you think about these things as you construct your village, or as you reach out to people to help." And I think as we get to value based care, it will be really interesting to see if some of the payers, if some of the big guy based care providers started to think about, wow, this village concept is right. If this helps with better outcomes, than we ought to be out there advocating for it. And it's a powerful message.

Ed Marx:
Because who is going to care about you after you're discharged? Now, some physician offices will call you. You'll get a survey. That's what you get. That's patient experience. You're going to get a survey. And who's really going to take care of you though? It's your family, it's your village. And that's going to keep you healthy. I didn't do a study on it, but as we're talking, I can imagine that readmission rates, if you had a village, would your readmission rate decline? I wonder.

Chris Hemphill:
Thank you very much. And I want to steal actually from, Mark Shipman here on checking in. And you said, "Hey, you get a survey, that's your patient experience," but what about checking in and seeing how people are doing? Like asking a set of questions to make sure that there's compliance, engagement, understanding of care. And I think that's extremely important. I'm going to flip it a little bit by saying that I really felt like I did get that experience when I went to a Walmart Health and it was just a primary care visit. I went there just to test it out and I also very much needed a primary care visit. I'm not compliant. I was not going every year like I should have. But I received check-in calls before and check-in calls after.

Chris Hemphill:
And that just really kind of lit my eyes as to what these organizations that are obsessed with consumer experiences, how they're operating and how they're acting. So you could actually... We did a podcast last week on Hello healthcare. You go to hellohealthcare.com, or you can go on your apple podcast or wherever you get your podcasts. And the question that we asked was, will retail health eat traditional healthcare? And spoiler alert, the answer is no. But there's a lot of people that we talked to that kind of highlighted how are the experiences and the new and interesting things that these organizations are doing. So if you want to check out the podcast, I'll drop the link down below.

Chris Hemphill:
But Ed, really wanted to thank you for coming on. Next week, if this village would like to join us next week, we'll be discussing with Dr. Kavita Mishra, who's actually a fellow of transgender medicine at the Cleveland Clinic. And we'll be talking about disparities in care for LGBTQIA+ or sex engender minorities. So I'm excited to have that conversation and bring these things into the fold. And we're just really thankful for all the people that have doubled the meeting time, canceled whatever competing Zoom meetings just to hang out with us. I'm thankful for that. So thank everybody for hanging out with us for a little bit longer.

Ed Marx:
Thank you.

Michael Linnert:
Thanks, Chris. Thanks, Ed.

Ed Marx:
Thank you both. See you.

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