Episode 10: The Rise of Patient Advocacy

Patient advocates strive to create a world where everybody has somebody there for them. Bonnie Sheeren, independent patient advocate with Houston Health Advocacy, helps patients navigate everything from their treatment plans to insurance hurdles to provider communications. Navigating healthcare still requires untangling the disconnects between parties, but the rise of patient advocates can make it easier for many who otherwise wouldn’t know how to proceed in their own best interest.

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Full Transcript

Announcer: It’s time to think differently about healthcare, but how do we keep up? The days of yesterday’s medicine are long gone, and we’re left trying to figure out where to go from here. With all the talk about politics and technology, it can be easy to forget that healthcare is still all about humans. And many of those humans have unbelievable stories to tell. Here, we leave the policy debates to the other guys and focus instead on the people and ideas that are changing the way we address our health. It’s time to navigate the new landscape of healthcare together, and here are some amazing stories along the way. Ready for a breath of fresh air? It’s time for your paradigm shift.

Michael: Welcome to the “Paradigm Shift of Healthcare,” and thank you for listening. I’m Michael Roberts here today with co-host, Jared Johnson and Scott Zeitzer. On today’s episode, we’re talking to Bonnie Sheeren, an independent patient advocate in Houston, Texas about her work and how patients need help navigating today’s healthcare system. Hi, Bonnie, and thank you so much for coming on the show.

Bonnie: Oh, pleased to be here.

Michael: So, we are now up to episode 10, on 10 episodes through this first season, and we’ve had some really fascinating conversations with people that are just in all various component, all various spots of sort of the healthcare continuum, and we’ve had a chance to talk to doctors, to practice administrators. And in our last episode, we talked to somebody from an accountable care organization, and she was telling us about just how the entire system was designed to help patients not get lost in the middle of everything, you know.

And as exciting as that is to hear that there are systems that are really designed towards that and are helping alleviate some of those problems, even in the episode, we talked about how few organizations are really set up to do that. And so, I’m very excited to get to talk to you today, Bonnie, about your role as an independent advocate. And I’d love to just start off with, you know, how did you get into patient advocacy as a career?

Bonnie: Okay. Well, I basically was doing patient education medical video over at MD Anderson Cancer Center. And I was very comfortable in the world of oncology, and that we went everywhere with our cameras, we interviewed patients. I did doctor videos for conferences so I can talk doctor talk, you know. It was all good. Then they merged our department. We’re part of the UT, University of Texas system with a doctor, a famous ER doctor here in Houston who would do syndicated TV shows.

And they switched me over to working there, and I went from everybody sitting around comfortably talking about meetings and talking about oncology to everybody running around with their hair on fire. But it was, as much as I was kicking and screaming, changing that position basically I learned a lot, because the ER doctor would say, “Let’s do hepatology this week. Let’s do nephrology this week. Let’s do immunology this week.” So, I learned a lot about a lot of different specialties.

We also went everywhere with our cameras. So, I kind of learned the protocol on how to approach things, you know, the ebb, the flow, how hospitals kind of, how they work, how you could approach people, you know, what you can do and that sort of thing. I had my younger daughter. I love the Texas Medical Center basically. So, I started shepherding family and friends to the med center because the Texas Medical Center is one of the largest in the world. And most people when they get there, they’re like a deer in headlights. I mean, it’s just so overwhelming.

So, I was always taking family and friends through the med center. And my daughter said, “Hey, you know, people probably do that professionally.” And I said, “I don’t think so. I’ve never heard of that.” And sure enough, I get online and there’s two organizations, one is APHA which is, and I made this up because it’s an acronym, Alliance for Professional Health Advocates, and NAHAC, the National Association for Health Care Advocacy. And they started up in 2009. I joined those groups, and in 2014, I started my company.

Scott: Wow. That’s great. So, what are some of the things that you do to help patients as an independent advocate?

Bonnie: In some parts of the country, there’s a bunch of advocates, like in Washington State, Southern California. And they all specialize like in different aspects of healthcare. Texas, we need to build up more patient advocates. I would like more of us to join on, you know, get on the bandwagon. So, I do a little bit of everything. I help people untangle their insurance and medical billing issues. I go with them to doctor’s visits and, you know, take notes and help them out with the kind of questions to get the care they need. I also run up to hospitals.

I’ve done a lot of, a lot of times communication breaks down in hospitals and things go badly. And so, I put on my tennis shoes, because there’s a lot of running that goes on in dealing with hospital issues. And I run up to the hospital, and I clear up the communication, I try to get everybody on the same page, and make sure, you know, everything gets cleared up. So, you know, right now, I’m kind of a Jill of all trades, so you say. I don’t really specialize in one particular area.

Scott: That’s really interesting. We were talking to a practice manager up in New Jersey, and she was talking about how there’s always an outlier or two where there is some sort of complicated surgery or the patient really wants one of their surgeons to do the surgery, so it could be out of network, and there’s just so many different curve balls that come up. And she was talking to us about how she sometimes gets on the phone and says, “Look, I’ve talked to the insurance company and I’m not getting far. Maybe you need to call them too.” And that sounds like a place where you might be very helpful.

Bonnie: Oh, I’ve done that. Yes. I had a client that needed a surgery, and yeah, it was getting denied and everything like that. And we went to, sometimes you can go to independent review organizations, IROs. Sometimes you can go to external review groups. We took it to an external review group. They approved the surgery. We got it done. I had another client who had a procedure done. There’s so many disconnects and mistakes and just human errors, right? So, the office thought it was covered but it wasn’t covered. And so, we took that one to external review, got that one covered. But that’s not something the average office practice has time to do or can do.

And also, as an advocate, having done this for five years now, a lot of times I know a lot of these people by their first name, like the billing people. I’m like, “Hey, how you doing? How are your kids? How’s everything going?” You know, that sort of thing. And they’re like, “Hey. How are your girls doing?” And we talk about the problem, and get where you start getting all these connections going, and it’s just something that the average patient or even healthcare provider just can’t do.

Scott: That’s really interesting. And so, from a cost perspective, I’m assuming that the patient would pay you and not just you specifically. I know that, you know, we talked a little bit before that you charge by the hour, which is one way to do it. And you said there are other ways that it can be paid for?

Bonnie: Some of my colleagues will take a percentage of the money that they save for certain cases. It’s an evolving field, so a lot of people do it a lot of different ways. Now, I have always encouraged my clients to at least try to talk to their CPAs to see if they can put it on there as a medical deduction because it’s a part of healthcare. And that’s something that my colleagues and I talk about a lot because we would really like to become, you know, legitimize that way.

We now have a board certification. I’m board certified. So, we’re trying to get where we…so our clients, you know, can take the money they pay us and use that as a medical healthcare deduction. I haven’t heard back from any of my clients who have been successful in that, but I always encourage them to talk to a CPA about it because we just can’t be paid by the insurance company. We can’t be paid by the doctor. We can’t be paid by the hospital because then we represent their interest.

Scott: Understood. Yeah. That’s a very…

Bonnie: So, it has something the client…

Scott: Yeah. It’s a very important thing to note there. You’re working for the patient. Which brings me to another question. Do you find that the hospitals are happy that you’re there, that the doctors are happy that you’re there, or they don’t like it, or somewhere in between? How does that work in general?

Bonnie: It’s interesting. Sometimes the doctors think I’m part of the family. Sometimes they think I’m a nurse which is kind of sexist because I could be a doctor.

Scott: Just it, that’s sexist.

Bonnie: Just because I’m a woman. Sometimes they don’t seem to mind my being there because I’m always working towards a resolution. I’m always working towards, you know, helping the communication between themselves and the patient. So, basically, I have never… In most doctor’s offices, they don’t give me a chance to introduce myself. You know, doctors rush in. They start the appointment. I try to say, “Oh, and I am,” and I can’t get the words out.

But in hospitals a lot of times, I will wear my name badge, you know, because name badge is a, very important to hospitals, and they do know who I am, and they do know what I’m doing there. And it’s never a contentious thing. It’s always me just, “I’m going to be here until we resolve this. We’re gonna keep talking. We’re gonna fix this.” And pretty much, you know, with that kind of attitude, what can they do? They can’t object to that.

Scott: I think that’s just awesome. I can’t tell you how many times I’ve… As a sales rep, I once sold a lot of medical devices in, many, many years ago, a couple of decades ago. And I remember, like, I’d walk into every hospital. And every hospital would have a different system about how to get where. And I always thought there was unintuitive modalities that you would come up with. It’s like, “Well, sports, that’s blue. You’re going to orthopedics. That’s the blue walkway.” And I always laugh, like, “And where would that sign be?” You know, I just got to mention university.

Bonnie: Right. Oh no, hospitals are like mazes. I mean, it is just… And when somebody is not feeling well or they’re injured, I mean, there’s no way to sit there and figure all this stuff out. And also, I always tell my clients, I said, you know, “And you get to cry while I talk.” Because many times, especially in a hospital situation, they are in tears. They’re crying. They’re upset. There’s no way a constructive dialog is gonna happen between them and the hospital staff. But I say, “Okay. Here are your tissues. You can cry and I’m gonna be talking and fixing and resolving this.”

Jared: Hey, Bonnie. This is Jared. I’m curious because I think you’re just touching on something right there about physically that it’s overwhelming. And I wanna just overall trying to navigate the healthcare system these days really does, at least in my mind, it feels overwhelming in a lot of other ways, too. Do you feel that way, too? Do you feel that navigating the healthcare system has become more complicated for patients?

Bonnie: Oh. Oh, yes. Especially because a lot of my clients are older and you get into the EHRs and the online patient portals, and then the insurance plan seems like they get more complicated. And then the state and federal laws keep changing all the time. There’s new treatments, there’s new procedures. It’s so overwhelming. I mean, I try to stay up with it. I’m kind of into it like every single day, and I feel like I’m drinking from a firehose of new information, so I can’t even imagine how patients must feel.

Scott: They’re overwhelmed.

Bonnie: Yeah. Very overwhelmed. No. And to the point of, and here’s the problem, you know, they feel abandoned. They feel alone. They feel they’ve been left by the side of the road. And I mean, I have clients that, you know, sometimes, we win the case and sometimes we don’t. Sometimes it’s a really hard lesson for some of my clients with, “This is the way the healthcare system works, and we’ve run into a brick wall, and that’s it.” But they’re always thankful because somebody was there trying to explain it to them, and helping them understand, you know, how things, you know, went badly, and how not to do it again. That’s kind of…it’s a hard lesson sometimes but it’s kind of the way it goes sometimes.

Jared: So, what can we do to make that experience better? Like, from your standpoint from what you see, like how do we provide better patient support in general?

Bonnie: In my perfect world, we would have… I love wraparound clinics. We have several wraparound clinics here in Houston that what they do is they’re mainly for people with, like, chronic diseases that are, start in childhood, and they’re gonna go through adult, and are gonna see them forever, for a lifetime. Like, we have a neurofibromatosis clinic with Dr. Slopis, and he sees them from day one till whenever. And they just have a lot of support.

You know, they have a lot of people to, staff to work with the patients, make sure they hear them, make sure they listen to them, make sure they get the support they need. You know, that’s their thing. I just had a procedure myself recently and I had to tell the surgeon. I was like, you know, it’s a little outpatient day surgery. But I said, “I come from a patient education background and I’m gotta say your patient education materials might be a little bit better improved.” And he laughed and he said, “Nobody reads those. You’re probably the only person that has read those.” And I’m like okay.

Scott: It might, it’s not good info.

Bonnie: So, it’s like, “Okay. Well, you need to figure out a way to have a staff member, or someone, or teach-back, or someway that you’re having, making sure people are internalizing what you’re saying because people are getting very upset. When I worked at Anderson, a lot of times, unfortunately, they would have to call security because communication had broken down, and the patient was very upset with their healthcare provider, and those were not the good days. There needs to be more of this team. There needs to be more of this support. And, you know, I think that’s where you get a lot of these media stories, and these stories where people, you know, they just sound horrible, nightmarish, you know, this happened, and this happened, and this happened. And I feel like it’s, one reason, they feel like it’s such a nightmare is because they were alone.

There was nobody there to ask questions. There was no one there to advocate for them. And that’s another important thing is to have somebody go and advocate for us when we’re ill, when we’re injured, when we’re whatever. We can’t think straight. I always tell people you’ve got to have somebody with you especially like in the ER. You shouldn’t be come to the ER by yourself if your ill or injured because there’s no way you can communicate with the staff well enough to get all the questions answered and make sure you get the appropriate care and everything like that. So, I don’t know. That’s just my perfect world where everybody has somebody there for them. Maybe that’s the best way to say it.

Michael: Yeah. Bonnie, it’s interesting that you talk about that feeling of loneliness. We have a family member that has a chronic condition. And when we first found out about it, it was exactly that. We didn’t know where to turn. We didn’t know even what the condition was. And so, you started down this rabbit hole of online searching and starting to get advice from people that may or may not be relevant. And you just kind of can easily get in this spiral.

And I know that when we were starting to try and solve this problem, we had no idea how to tackle this system, how to tackle this problem other than let’s just keep going back to the doctor until we get some kind of answer. How do people get to you and to other patient advocates as somebody that can help them through that gap, through that feeling of loneliness between “I just found out and I don’t know what to do,” to “now I have somebody on my side and we can do this”?

Bonnie: There’s a couple of directories. There’s actually another group called Greater National Advocates that just started, and you can find a lot of us online in those directories. And I always recommend that people, when they call me, I always tell them, “This is gonna be a partnership.” I have heard through third-party sources or whatever that there are some advocates that are like, “Okay. Well, I’m gonna take over and I’m gonna do everything and you just sit back,” and I don’t do that. I’m like, “This is a partnership. We’re gonna be working together,” mainly because I get very fond of my clients.

That’s another problem, you know, I wanna make sure that we can work together. And just always say, you know, “Check me out online. Look up everything possible about me on LinkedIn, on Twitter, on Facebook or whatever, you know. Make sure you’re comfortable with me being there for you because this is really important. This is either your physical health or financial health in there, too. So, you need to really, really, you know, feel like we can work together.” And I’ve had to tell a few people that I don’t think we’re a good fit. I don’t think, you know, they’ll be, like, really angry, like we’re gonna…or when they bring up malpractice, that’s never a good fit. That’s always a no-go. They go, “Well, I’m gonna do. I’m thinking about malpractice.” I’m like, “Okay. Well, good luck. I’m sure there’s plenty of attorneys that will talk to you.”

Scott: I was thinking about this while you were talking. I’ve got an in-law who’s remote, who’s getting older. I’ve got my own parents who are getting older. And the thought of one of them getting sick, and all three of them are intelligent, but they answer questions like, “Yeah. They’re having me take this red pill.” And I’m always like, “What are we? In ‘The Matrix?’ Like, what are you taking?” And then I’ve got to, you know, get permission to call the doctor and say that I’m the son and may I ask some questions. And usually, it’s always a polite answer of, “Oh, yeah. Here you go. Here’s the info.” But is that something you get too? Like, you know, just remote younger people saying, “Please help me and the family.”

Bonnie: Yes. I have been, quite a few often. I have a lot of clients, adult children who live outside of Houston who basically they will call their elderly parents and say, “How did the doctor’s visit go?” And they’ll go, “Fine.” And the adult children are like, “No. Not fine. Not fine.” So, I go with them, if the older parents are okay with me, to the doctor’s appointments, and if it’s okay with those older parents, I get the adult children signed up to their patient portal because the patient portal is gonna keep you from having to make tons of phone calls, you know, how you’d leave a call for the nurse, the nurse calls back, and you go back and forth, back and forth.

Also you can see, you know, that usually some patient portals are better than others. A lot of times, you can see the medical records. You can see kind of what medication they’ve been prescribed. You know, you can see all of those kind of things.

So, yes, I have gone quite often with elderly parents to doctor’s appointments and that sort of thing, and asked certain questions. And also, you know, the important thing is a lot of times when doctors will come in, this will happen to almost any patient. You know, the doctor will start talking about what they wanna talk about. So, I had one older couple, and they were getting ready to move to where their adult children were. You know, they were moving away from Houston. And the doctor was talking about this long-range treatment plan.

And of course, they wanted to go along with the doctor. They were like, “Okay. Well, yeah. You know, the doctor said.” And I could say, “No, no, no, doctor. You have to understand they are moving in three months. Let’s go back to this point. We need to reconfigure and say make this treatment plan work with that timeline,” rather than just have them just sit there and agree to what the doctor said.

I also, yeah, I have clients, you know, a lot of times, they don’t really know how to talk to doctors. So, a lot of times, they go, “Tell me what’s most important to them.” I have a client right now that has a big family event coming up next year. That’s like number one to that client, that big family event. And so, if the doctors start talking about this, this, this, and this, and it doesn’t, you know, it’s not gonna cause that client to reach that goal, I’m gonna just mention it to the doctor and said, “By the way, this is a goal we’re going for, and this is, you know, we need your help reaching that goal.” Otherwise, the doctor can’t read the patient’s mind. I mean, they’re not gonna go, “Oh, I wonder if this person has a big family event coming up.

Michael: Absolutely. Bonnie, it’s interesting one of the different solutions I’ve seen out there for this kind of situation is that there are more apps that are out there, more scenarios where patients can record their appointment with the doctor for these kinds of reasons so that adult children can listen back to the appointment. But there’s a lot of concern, and even legality depending on which state you’re in and all of that fun stuff about making sure that everybody is aware that you’re recording all that kind of stuff. But it’s very interesting the way that we’re talking through this and you’re able to not only relay back to the adult children, but also bring concerns in. It’s a two-way path instead of just grabbing information and dumping out somewhere else.

Bonnie: Right. And I have recorded. I don’t, I have a rule against recording any psychiatric visits that I accompany clients with. I just feel like that’s crossing a line, and the psychiatrists always say no, and within range, I mean, that’s very understandable. But I’ve asked many other doctors if I could record, and they say, “Yes, and that is fantastic.” I put it into Dropbox. All the adult children have access to that Dropbox password. They all listen to it. They can hear the doctor’s voice. So, they not only hear that the doctor is saying, “You know, we need to do this, this, and this, this treatment,” but they hear the tone of the doctor’s voice. And they’ll say, “Oh, that doctor is really kind to my parents.” I’m like, “Yes. That doctor is very kind.” So, it’s not just my opinion or my take on it. It’s they get to participate.

Michael: That is so awesome. Bonnie, is the best way for somebody to get in touch with you if they wanted to work with you, is that just through your website, houstonhealthadvocacy.com?

Bonnie: Yes. And I’m trying to, this week, I’m working on launching, I’m gonna try and launch workshops because I wanna make people more proactive. And one of my colleagues has a saying, “People should call us when they smell smoke, but instead they call us when there’s flames shooting out of their house.” So, we’re hoping to start some educational-type workshops. I’m still developing those. But I just see this great need for everybody to start understanding the healthcare system better so they don’t get so lost.

Scott: I think that’s a great idea. That really is.

Michael: Thank you again, Bonnie. “The Paradigm Shift of Healthcare” is brought to you by P3 Inbound. You can find our full archive of episodes and interview transcripts at paradigmshift.health, and recommended guests or topic on Twitter at P3.

Announcer: Thanks again for tuning into the “Paradigm Shift of Healthcare.” This program is brought to you by P3 Inbound, marketing for ortho, spine, and neuro practices. Subscribe on iTunes, Google Play, or anywhere you listen to podcasts.