Does anyone have more energy and drive than Ed Marx. I have no idea, but I love his passion for making healthcare better. Today we discuss the patient experience. I hope you enjoy.
author. I a journeyman. And I learned from people like you and others and your podcasts yourself and your, and your web presence.
And I just copy you
former former CIO. I mean, we got the author thing down. You, uh, you're also doing a lot of work in digital, in the digital space. And, uh, uh, I don't even know where to start. I want to start with the podcast stuff. So digital voices, what people do this to be all the time. I'm going to do it to you on ad, which is, um, coolest interview you've had so far this year, uh,
other than any that have.
Okay. Don't, don't worry about it. I got it. I got it. So, uh, I don't think we released it yet, so it would be coming out very shortly, but, you know, I'm, I'm writing a book with Chris Ross on patient experience. And so we've been doing a lot of focus groups and especially for communities that are neglected without, you know, their health equity issues.
And so one of those communities is the transgender community. So I have a nephew who became my niece. I'm very sort of connected now with that community. And I want to make sure that they get the best health care. So not only did I have her on a podcast already, but I had a surgeon who does a sex change, uh, surgeries, uh, to help people who are transgender that wanted go the whole way.
And that was really interesting because you know, it's not something I'm super familiar with. And, uh, but I'm very empathetic to and appreciated. So just asking her about her practice and how it works and things like that was really fascinating.
Well, that's the thing I like about digital voices. So the patient experience, the patient experience is so broad.
I mean, you talk, are you talking about one community? You talk about the, uh, disconnected community. I was talking to a CIO this morning. He's like, uh, you know, we've got a significant homeless population and they come to me and say, what are you going to do from a digital perspective? Connected the homeless population.
I don't know what the answer to that is really. I mean, we have some connecting to the, to the populations. First of all, we have to see them and hear them, which is digital voices. But then we also have to really, I mean, get up, get in and among them and talk to them and see how they're interacting with health.
Because again, a very marginalized community. And if we don't get them health. Where they are, then we know when they do get healthcare, it's only when it's the most severe situation and which is not good for them or good for anyone. So I, I know. So another great guests that I had was the chief technology officer, the first one for New York city.
So she and I, her name is Minerva. She and I worked very closely together with New York city, which she did to address part of that is she took all the phone boots, remember phones and phone booths. They're still phone loose out there. Well, not the boosts anymore, but the connectivity to. So she, she took that and made wireless hotspots.
So to the extent that the population has a device and the majority, at least that she worked with did, um, you can at least have a way for them to get telemedicine and you can do RPM as well. So that is one way. So in. All communities had all these telephone boosts at one time. So that means that there's some infrastructure capability.
And so that's just one example of how to, how to reach them.
That's interesting. Yeah. The urban populations are interesting to me and, uh, the sisters would always say to me, I don't see how digital is going to reach the homeless population. So we actually did a study at one point. And, uh, the numbers were kind of staggering of number of homeless who have some sort of digital device.
Um, I didn't, I don't remember the makeup or how they ended up with them, but it, it ended up being away and texting is pretty ubiquitous. I ended up being a way for them to communicate with the health system, for us to communicate with them. Um, but still there, they. They don't want to be found. So when they come to the health system, they don't give us their actual information.
It's hard to, it's hard to follow up and provide them the care
that we want. The, it is definitely a struggle. So that's why there has to be policy change at these hospitals. So going back to New York city, because we did care for it, where we were the public health system. So we did care for, for everyone.
And we knew that a lot of people couldn't even speak a hundred languages. So couldn't even speak the language and no way that was the EHR going to be able to take all that. So we allowed a lot of aliases. So people who didn't want to disclose who they were, whatever, we, we came up with a way around that because they had to have care and there was no way we were going to refuse care for someone because they can't speak the language or, or that they have, uh, they're incapacitated mentally or otherwise.
So we just made it, we just accounted for it, made it happen. So
focus groups. Talk to me about that process. I mean, the. Was it, you went into certain markets and listened to people. Did you do zoom meetings? I mean, this was starting to be, yeah.
Yeah. And we're still, we're still doing some cause the book's still in process is about 30% finished and we're always discovering more.
So, you know, we're, we're doing a lot of these focus groups yet. So we realized that Chris Ross and I, if you know Chris he's, we're both white men and older, right. A little bit more mature. So we know our experience can not represent everyone's experience. So we knew. To say, look, we need to talk to everyone, marginalized groups.
We need to talk to, uh, you know, different like the transgender community that I was talking about. So we set up these, uh, focus groups and some of them were general. So they were zoom. The majority were zoom meetings. And, and so we set up these focus groups and we were able to contact the right organizations to say, this is what we're doing.
Can you allow us to, you know, other people that are interested in speaking with us? And then we did the same, like with CEO's. So I also wanted to get sort of the hospital. And so we were both CEOs from large academic medical centers, and we have no idea what it's like at an FQHC. So we had a FQHC focus group CEO's from those, uh, we had a small hospital and we segmented a medium sized hospitals.
So we really went after. I don't, I don't wanna, you know, I don't remember, you know, 15, 20 different, uh, groups that we went after to make sure that we get every voice heard when we go publish.
Did you, uh, did you find there was a disconnect between what the CEOs were saying? They thought the experience. At what people were saying, no, this is the actual experience.
Yeah. I would assume there is not, not, not because, because we're, so we have so many things we're trying to do. We're so focused on solving problems. Like I dunno, med rec and, and med adherence and those kinds of things that sometimes we don't have enough time to just listen to the community. So I wouldn't
surprise me now.
There's a huge gap in that, you know, I thought I was pretty connected cause you know, throughout my career, I know, you know, bill, I, I used to my staff and I used to spend a lot of time around. Spending time. And of course we've all had family members. And so I thought that I knew what a patient experience was, but until I was laying in the back of the ambulance facing the ceiling, it was a whole new ballgame.
And so it was the same way when, uh, you know, when I had cancer and, you know, you're facing the possibility of death and, um, you know, and you're, you know, you get those, you hear those words, you've got cancer and it's, it's completely different. So everything you think, you know, you, you don't until you're.
You're like at the mercy of the systems that you were overseeing and that's a game, that's a game changer. So we want, you know, part of the message of the book, even though it's being written for the consumers, it's not written for healthcare, although I'm sure healthcare will appreciate the content of it.
It's really wow. It's, it's, it's different. And we try to, you know, provide examples and sort of shake people up a little bit to really understand what that experience might be
like. So how do health systems get better at.
Well, so part of the, of the book actually is to empower the patient because we're saying, look, patient, you cannot expect even.
So what we found in our research is, and I don't want to name names of, uh, health systems. Cause you know, it was just say health system X, you could have a good or bad experience at health system X, even if health system X is known for great experiences. So really we're trying to help the consumer and their family and their friends and their broader net.
To prepare themselves to have a good clinical page, a good patient experience. So we found that patient experience is neither the, uh, has a positive or negative effect on outcome, but can it influence either?
So qualities, the baseline. Yeah. You expect a best outcome. That's possible given you.
Yes and no, because if you don't fight for yourself and I've had to do it, maybe you've had to do it or fight for family.
Sometimes, if you just take whatever's given to you, then you might have not such a great quality experience. So that's why we are really talking to the book is very practical. Like how do you sort of empower yourself, your, your, your ecosystem so that you make sure you have a good experience, even if how do you advocate?
So that's interesting. Cause I'd be, I've been on that floor where they're like, um, all my father and my father all passed away and different aspects. My wife and I were looking at each other like, okay, should we say something to the nurse? Should we add you sort of like, while they're doing the best they can.
Yeah. But I don't know if yeah.
And I would not assume that they are. So I love clinicians. I'm married to a clinician and there they are. Dodd's hands of mercy and grace and healing. So I don't mean no disrespect, but they can have bad days are not so good days. Or maybe they don't remember something. Like I forget sometimes.
And so you have to really push in a very, in a very empathetic way that you have to push and you have to fight. And I can, we actually give examples from both Chris and my personal journeys about how we had to proactively take action in? Had we not, we could have had a very negative. And I hear stories about that.
The focus groups a lot too, that if they didn't, you know, get more involved in demand, you know, certain type of care or, or, you know, uh, certain follow-up, it would not have happened. It would have led to a bad outcome. So that's why, again, we were, we can do great things. And, you know, that was the beginning of your last question about what can hospitals do, but I kind of flipped it a little bit.
Like what can we do as patients and families and friends, uh, because that's the most important part, the hospital impact you're going to have in a home. Is minimal for patient experience compared to what the person can do, but it's the two working together. So you're having sort of the, top-down like what the organization is doing, but then what you as a patient, is there
This is the technologist in my head going, is there a platform where we can help people to advocate for themselves? Is there a way that they, we could like give them a way to communicate with our health system to say, Hey, I feel like this isn't going in the right direction could say.
Yeah, look at this bill that that's a, that's a great opportunity for some entrepreneur, for someone to really think about.
Cause we haven't. So ours is very practical. It's very manual based because you know, not everyone will necessarily have the. But I think there is an opportunity for someone to take the model that we've created and really sort of automate it. And because it's so practical, I mean, you've given me some great ideas in real time, so thank you.
But it's so practical. Like how do you build your network if you don't have one, like, do you really know who are the, if I were to ask someone who are the five, like I'm talking to a couple who are the five couples in your life that no matter what happens to you tomorrow, they're going to be there for you.
And they've made a commitment to do it. Hardly. Anyone could give me five. They'll say they can give me one. But they not five. So we're going to teach you how to do it. So I have mine, mine's called the Texas 10. These are five couples. We meet all the time regularly. They are committed to our, my health and my mental health, my spiritual health.
They're committed to my marriage. So like, if I'm struggling with something, I can pick up the call, they do the same, you know, pick up the phone. They, we pick up the phone for them. And so we teach things like that that really can make a difference. Who does,
uh, do you know what I'm learning from you right now?
I need more energy in my body. My gosh, it must be the exercise and the whatnot. I mean, you are so much energy. We're on day two here. I don't know
how you're doing it. It's been like four hour nights. Cause my wife loves the club. As you know, we came here Friday night. I think we club Friday night, Saturday night, Sunday night, and last night it was like till two it's, um, you know, main bars.
And did you exercise this morning? So I confess, don't tell my coach Ben fees out watching three or four hours a night, four nights in a row. I just couldn't get, I couldn't do it. ???? So thank you for your work. Thank you for all. You do really appreciate