In this episode of the 4x4 Health series “Working in Healthcare”, co-hosts Dave Levin, MD and Geeta Nayyar, MD talk with Patient Experience Consultant Stacy Hurt, M.H.A., M.B.A. With more than 20 years of experience, Stacy is an award-winning healthcare executive, stage IV cancer survivor, and special needs mother. She has voluntarily served as a patient advocate for thousands around the world. As a Patient Experience Consultant, Stacy leverages her unique professional, patient and caregiver perspective to identify gaps where companies and health systems can better serve their end users.
Dr. Dave Levin: Welcome to 4 x 4 Health sponsored by Datica. Datica, bringing healthcare to the cloud. Check them out at www.datica.com I'm your host, Dr. Dave Levin.
Dr. Geeta Nayyar: And I'm your cohost, Dr. Geeta Nayyar. Healthcare is one of the largest sectors of the US economy and one of the most intensely personal aspects of our lives. But few of us have insights into what it's really like behind the scenes. Who are the people who make healthcare tick? What do they do and why? What observations and advice do these insiders have?
Dr. Dave Levin: In this special 4 x4 Health series working in healthcare, Geeta and I talked with doctors, nurses, administrators, IT professionals and others to get insights into their personal journey and the wisdom they've acquired along the way. Today we're talking with patient experience consultant Stacy Hurt, MHA MBA. Before the 20 years of experience, Stacy is an award-winning healthcare executive, stage four cancer survivor and special needs mother. She's voluntarily served as a patient advocate for thousands around the world. As a patient experience consultant, Stacy leverages for unique professional, patient and caregiver perspectives to identify gaps where companies and health systems can better serve their end users. We're fortunate she's here today to share that unique perspective. Welcome to 4 x 4 Health Stacy.
Stacy: Hi Dave. Hi Geeta, thank you for having me. I'm so excited to be here with you today.
Dr. Geeta Nayyar: Stacy you know, I'm a huge fan. You also know that I'm a doc, but I'm a big believer that we're all patients. So I just, I couldn't be more jazzed to have you on. Can you tell our audience a little bit about yourself and your organization?
Stacy: So my organization is basically just me, but the way that I’ve come to that is sort of a culmination of my life experience to date. And by that, I mean I was a business liberal arts major in undergrad and then I went on to get my graduate degrees in business and health administration and I knew that I wanted to be in the business of helping people. And to me that was a career in healthcare. I wasn't talented enough or smart enough to be a physician like both of you, but I knew that my interests and talents lie in the business world. So I embarked upon sort of my, actually my first job was at a health tech company as a customer service rep out of graduate school. And then I went into physician practice management and I worked side by side with physicians. And if you want to have a tough conversation tell a physician that they're not going to be paid because they're not coding appropriately. Those were never the best conversations to have, but they toughened me up a lot. And then I found myself in pharmaceutical sales, which I enjoyed greatly and would probably be into this day if it weren't for one of my first major life events that has shaped me as a person. And that was, our first son was born, Griffin. In 2005 our younger son was born, Emmett, and in 2006, after Emmett missed all of his six-month milestones, something was wrong. And I had a normal pregnancy, great pregnancy. I was in great shape. But we knew something was wrong with Emmett. So we embarked on a series of tests. We stopped counting at 60 specialists that we saw to reach a diagnosis of a chromosome abnormality and found as a one, two duplication of his first chromosome Q arm has an extra material and the way that that manifests is that he cannot walk, talk or do anything for himself. So he is now 14, he functions as a six-month-old baby. So our typical day right now, especially in quarantine because we usually have a nurse who helps us take him to school and keep him safe from aspiration. But I lift Emmett out of bed, put him on the stair lift to bring him downstairs. I ambulate him into the bathroom. I have to hold him onthe toilet. I take him in a room, I put on his diaper, I feed him, I medicate him. I apply his ankle braces; I do ambulation therapy with him a couple of times a day. I'm doing speech therapy with him, occupational therapy. And it's a very full busy day. Emmett's diagnosis, his karyotype is one of three known cases in the world. So, I have two master's degrees and my husband has a master's degree and we have no idea what the future looks like for Emmett. I know that in one of our appointments we saw the geneticist and she told us Emmett will never walk or talk,bget used to it in those words. And I looked at her and I said, if this is up to us, we are going to give Emmett the best life he can possibly have and to this day Emmett is doing way more than anybody ever expected or ever thought. And I'm so proud of him and he inspires me every single day. And so when we got Emmett's care back together, I had to retire from pharmaceutical sales to attend to him and my older son. And I ended up resuming, rejoining the workforce in I think it was 2011 and I was vice president of another pharmaceutical company, vice president of training development. And that was a great job. I was working from home. I was traveling only once a month to onboard our new employees. And then in 2014 I was not feeling so well. And let me preface this with, I am a career athlete. I take care of myself, I eat healthy, I'm a nonsmoker. And so I was having these symptoms of abdominal pains, fatigue. I just, I was waking up just feeling like crap. I was having some blood in my stool, but a lot of my friends were having internal hemorrhoids, so I just ignored it and I was busy with Emmett. And so finally I went to my PCP and she said, you’re in great shape. At the time I was 43 about to be 44 and she said, I had no family history of anything significant. And she said, I don't think this is anything, but I am going to send you for a colonoscopy just to be sure. And so I went for a colonoscopy on 09.11.2014 and the colonoscopy revealed a tumor in my rectum so large that the GI couldn't get the scope around the rest of my colon. He aborted the procedure. He woke me up and he said the words that nobody ever wants to hear, you have cancer. And I just said, I don't even know how that happens. What do you mean I have cancer? I do everything right. I take care of myself. I exercise, I don't smoke. And he said, it just happens. And so I went for a battery of tests around that, the most definitive of which was a pet scan, which revealed cancer in 27 places in my body, rectum, liver, lungs, five bilateral spots in my lungs and 19 lymph nodes, 27 total. And I asked the oncologist down at UPMC, Hillman cancer center, I said, what are my chances of beating this? And he did not answer me. And I knew that was bad. And he said, I don't have a crystal ball. A lot of this depends on you and how you respond and we're just going to take it from there. And I said, and it's on me and what I do, I'm going to tell you right now that I am going to kick ass and kick ass is what I did. I went into chemotherapy and I remember, the most definitive moment in journey was right at the beginning and we were very honest with our older son.He said, what was going on, asked what was going on. He was 10 at the time. I was diagnosed on my birthday. It was a horrible day, September 17th, 2014. And he said to me, "mom, are you going to die?" And I said, I looked at Emmett in the other room and my husband put on his diaper and he was lifting him. And I looked at all that and I said, "there's no way I'm going to die. There's no way on leaving you and your brother when obody can take my place. There is no way." And so I set my mind to it and we shrunk that tumor from 11 centimeters to three after six treatments. It was an unprecedented response. My oncologist was completely baffled. Two of my three liver tumors resolved; four of my five lung tumors resolved. It was just like, I hate to toss around the M word miracle, but that's pretty much what it was. Like I said, it was unprecedented. I was classified as an exceptional responder and I ended up going into surgery in April, 2015. I was deemed surgical, which was wonderful. And we did the whole surgery at once, resected my rectum, resected my liver, removed the lymph nodes and the surgeon came out and he said, after we got the pathology back, he said, your lymph nodes are clear. And I said, what does that mean? He said, I don't know. It's weird. I think that surgeon talk for a miracle. But so I did some mop up chemo and 55 chemo’s later and that surgery, unfortunately I incurred a medical accident. He nicked a blood vessel. I lost half of my blood. I coded, I went into cardiac arrest and we had to whisk me back into a second surgery to find the source of the bleeding. I wound up in the ICU covered with tubes, came that close. I just remember going down the hall on the gurney to the second surgery and I thought to myself, I did not back down 27 tumors to die by internal bleeding. Like this is not going to happen. This is not how I'm going to go. And I woke up, I saw aclock on the wall and knew I was alive, and I was deemed of cancer free in March of 2016 and have remained ever since.
Dr. Dave Levin: Wow, Stacy, that's just, what an incredible story. And told with great passion. If our listeners are not moved and engaged at this moment, then I question whether they have a heart or not. The question on my mind is one that we often ask and what we've seen is this pattern that people come into healthcare and sometimes there's an event or it's a family tradition or something like that. Clearly, we've heard about some of that in your life that have influenced the choice to focus on health care. I guess I have really two questions related to that. Why have you thrived and risen when many of us would be broken by the experience that you've been through? And tell us a little bit more about the thought process that led you to focus on healthcare as a mission.
Stacy: Yeah. I'm a 100% Polish and we Pollok’s have tremendous work ethic. I can tell you that, I remember growing up and my dad said to me, "Stacy, you can do anything you put your mind to." And my dad told me to never be intimidated by anybody and to stand up for what I believe in. And there was a story...so I went to Catholic school and when I was in second grade, the Pastor came around and asked everybody, "what do you want to be when you grow up?" And I stood up and I said, "I want to be the first woman president of the United States." This was 1978. And he said, "okay." And that was it. And I sat back down and after he left, the teacher sent me into the corner for being smart. And I’ll never forget that. That shaped me so much as a human being. And I can't even tell you. And I just, I think that I always came through life to prove wrong, certainly felt that way about Emmett's diagnosis. I certainly felt that way about mine. And when I set my eye on something, I mean, that's it. Like don't tell me, no, don't tell me I can't do something because I will go out of my way to tell you every which way I can, especially if it's something that I feel very strongly about and I feel that it's right. And I feel that it's in the best interests of people at large. And so coming through all of that I just realized that the way that I came through that it wasn't for nothing, it was to show other people that way. And I guess coming all the way around to it Dave, I'm not really sure why I'm still here when I see especially patients who I advocate for every day dying of colon cancer. And I don't know why I was chosen to prevail, but I know that it's for others and it’s to give other people hope and to give a voice to the voiceless, if that answers your question.
Dr. Dave Levin: Yeah, it does. And I think it's a beautiful example. One of the things that my wife has frequently reminded all members of my family is that you can't choose what life throws at you, but you can choose how you respond. As you might imagine, it's a topic of frequent conversation around the dinner table right now as we contemplate that disruption to all of our lives from COVID-19. And I think you're sort of a living example of a; you can take those life experiences and they can either break you or they can become a source of inspiration. You can channel them. It's just as I said, I find the whole thing inspiring and I find you inspiring and a remarkable hero in the way that you've done that. I know Geeta is itching to get in here, so Geeta, jump in.
Dr. Geeta Nayyar: Thanks Dave and Stacy, just thank you again inspiring and humbling. I mean, you remind me of just so much humanity. I mean, just your story is just so, it's so humbling and inspiring and I agree with Dave. I think any one of us would be broken. So it just, it's so tremendous to hear what you've done, what you're doing. I love following you and that really is my next question is just as a patient experience consultant, as someone who really lives this in every way and shaped throughout her day, what do you tell your clients? Like, what's the one thing that you think your clients need to know about the patient experience and where it should be going and how it should be better?
Stacy: Yeah, this whole patient experience buzz term if you would, it's really come into being just in the past couple of years. And I'm glad because as you know, I worked as much as I could for the pharmaceutical company until I had to give it up through my treatment and then I wasn't supposed to live. So then I'm out of that and I'm like, now what do I do? I have all of this knowledge from when I worked in health care as an executive. Then I have all this experience as a full-time caregiver for Emmett and all this experience as a whole-time patient and surviving stage four cancer. It's not like you're, better. I have tremendous scars of my survivorship things, especially having colon cancer. I'm not afraid to tell you, hinder my ability to function normally as a person. But I work around them because I'm so blessed and grateful to be alive. So living those types of experiences every day are critical to anything that a company is trying to, when they're trying to develop a product that their end user is a patient, how can you possibly not include a patient in that product development process? How can you develop a website that is going to be used by patients that doesn't have patient input? I just helped a client and they had a website that was front facing that had no patient portal whatsoever. And I said to them in very straight terms, I said, so if I'm a patient and I'm going through a scan and I look over and I see your logo and I go to Google you, I see nothing to answer any of my questions and I'm laying there in the imaging. So, the internet has really changed everything for patients. You get a diagnosis and the first thing that you do is go to Dr. Google and you Google your symptoms, right? And that's where everybody is. So, that's really changed everything for the patient healthcare professional experience. So that's the number one thing that I tell my clients is to include patients in the process. Health system, same way. Why does a patient leave a practice? You know, there's like five main reasons that we all know. And as a patient, I’ve lived all five of them. I can tell you; I can help tell you how to fix them and I can give you concrete examples of each one of them that have happened to me personally. So I think that raw, organic, walking the walk, empathetic experience needs to be included again for companies, for health systems to make them the best that they can be. Really.
Dr. Dave Levin: So, Stacy, this really resonates deeply with me and I see it as part of a larger theme with how we do things in healthcare. And in particular how we do information technology. What I’ve observed over the years as you can pretty quickly look at an organization and figure out are, they doing health IT with their people or to their people. And I think it tracks pretty well with success in terms ofadoption and achieving the outcomes that people were seeking in the first place. I witnessed this firsthand in the rollout of this latest generation electronic health records. And just looking at it from the standpoint of an IT department and an administration and how they engaged with the clinicians on the frontline and others. And I think that mirrors very perfectly what you're saying about engaging patients and others as well. I personally feel like we get the best result when we do two things. One, we remember that we have to think about people and process as well as the technology. And we tend to overlook those first two cause they're hard. And the second is that we get all the stakeholders around the table and engage in a process that will surface both the challenges and a variety of solutions. And I think you bring a really important voice and constituency to that. I am curious about some of the concrete advice that you give organizations. I assume you go in and you kind of assess in a way what I’ve described. And then you're recommending treatment as it were. So what are some of the concrete things that you see and that you recommend to a typical client?
Stacy: Number one would be the example that I gave, you have to have frontfacing resources and a website that is patient user-friendly. You have to assume that every patient that's using your product or engaging with your health system is going to go Google you. And you have to look through the patient lens, if you will, at that website. So that's probably like the first thing I do is, as I go look at a client's website and I say, if I'm a patient looking at this, how does this make me feel? Does it make me feel important? Does it make me feel engaged? Does it make me feel valued? And so that's like the number one thing that I do. Then just really kind of depends. If it's a product, it is, I like to look at marketing a lot. I think that's my background. So I tend towards that. But I go look at sales materials for the representatives and I just walk very basically through the process of, okay, who am I calling on? I'm calling on a physician. Do I have patient sensitive materials? Do I have patient profiles in my marketing materials that depict, users of this product, this is Joe. He is going to be using your product. Are your marketing materials reflective of your audience? Another big thing that I look at and again, this is just, I'm partial to this I think because of Emmett, I look at materials to be completely inclusive and accessible for all. So if you have marketing materials, are they able to be accessed by deaf people, by blind people somebody who's in a wheelchair, somebody who is of a different culture, somebody of a different color, race, sexual identity, etc. Is that reflected in everything that you are putting forward? So that's a big bias for me. And then in product development sometimes I just identify like huge misses of, it just really kind of depends what it is. But you know, somebody that's using a product and I have to back up and I say, well, did you think about this? Okay, we have to back a couple steps and redo this because this was a miss. So it really just kind of depends on what the area of need is. I like to go in and I just like to ask questions where are you missing the most? Where do you feel like you want the most improvement? And then I work from there. I really like to mirror my client's needs and what they, and I'm very fortunate that I have been on all sides of this working and operations, training, technology, sales, all these different areas I’ve touched that depending on their area of need, I can sort of fill in those gaps.
Dr. Dave Levin: If you've just joined us, you're listening to 4 x 4 Health and we're talking with the clearly very experienced patient experience consultant Stacy Hurt. Listeners I hope you have your hankies ready to dab tears and to also wave them and cheer for our guests today.
Dr. Geeta Nayyar: Stacy, you've covered so much and now in the age of COVID-19 and the sort of self-quarentine that we're all on, I'm curious to get your thoughts about telehealth, telemedicine, now with regulations opening up, there's just been mass adoption and what your thoughts are on that from a patient experience perspective, both for now during the pandemic as well as after.
Stacy: Well, I am a very straight shooter and I speak very candidly and I'm just going to stay telehealth where have you been all my life. There have been numerous opportunity since the diagnosis that I needed telehealth and telemedicine. With Emmett being immunosuppressed sometimes he was so sick. The last thing that I wanted to do was to take him out of my house into a germy doctor's office and I had to lift and transport him because he's non-ambulatory. So I had to lift him into a car to transport him and he gets motion sickness in the car that just going to compound things. So there have been so many opportunities that I could have used telehealth and telemedicine, maybe, certainly not in the year 2006, but definitely within the past five years. And so since rant is over there, I can just say now I am so enormously grateful for these opportunities of telehealth and telemedicine and I am so hopeful that they're going to stay around. Just expand, again so many of my fellow survivors in treatment right now, cancer patients who again are immunosuppressed and are having certain symptoms that they could just correspond with their doctors via telehealth and telemedicine. I'm just so excited about, I hope it stays around. One of my areas of passion now is how do we take the next step with that to utilize like an opinion. Patients that I advocate for are far away from NCI designated cancer centers that are, they are in community hospitals in very rural areas that don't have access to technology or protocols. How do we connect with those people to make sure that they're getting the best treatment possible? So to answer your question again, I am so excited and optimistic. I'm sad that it took a global pandemic to bring us to this point. But we're going to make our mess our message and we are going forward and onward and upward from here.
Dr. Dave Levin: Well very terrific summary and I don't think we're going back. This feels like a ratchet type moment. I don't think we know yet where they do balance will lie, but we've clearly taken a giant step forward. And your last point particularly resonates with me personally. I've written a lot about how the biggest barrier to innovation in healthcare in the United States is leadership. And I think that we have proven that in the last two weeks when we advanced telehealth more than we had in the previous two decades. It's not a technical challenge. Not that there aren't technical issues, but that's not really been the big barrier. The barriers have really come from people in process. And we seem to found a way to knock those barriers down very quickly. Like you, I’ve noticed this huge gap between what we experienced in the rest of our lives. I don't really remember the last time I went to a bank. It probably was to go to the safe deposit box. And maybe healthcare now is going to catch up and close some of that gap as, as well. You sort of anticipated my question, which is, you know, what comes next. And you talked about second opinions and which to me is another key use case, which is we want to spread the expertise around whether it's a second opinion or making sure that a neurologist is available to give an expert opinion for a stroke and progress that's occurring in an emergency department. The one I'd ask you to comment on specifically though, because it intrigues me, is bringing patients even more into the loop in terms of them sharing the experience they're having contributing their own data to the medical record and to research. And I'm curious what your view is on that particular topic.
Stacy: I think patients don't know what they don't know. And by that, I mean that now there's all this talk about, taking control of your data, knowing what's in your medical record. And so many patients I talk to, they just don't know what's available to them. They don't know the right questions to ask. They don't know what information they need. Like I said, I do a ton of advocacy, just volunteer. I get tons of emails from people who have found me through my website, etc. And I have to do a lot of hand holding to say, well, did you ask this? Did you ask that? Did you, and then there's, well, I'm afraid to ask that. Am I allowed to ask? You absolutely can ask that. You should ask that. Why are you not asking that? I do obviously in a very nice sensitive way, but I think that, we've seen the changes with the interoperability rules and things like that, which is very encouraging. But I think that we have to back it up a couple steps and do some very basic patient education to patients as consumers, as to what their rights are and what they should and can be asking about and how that influences their outcomes and their care. Because I don't think people know. So we know in the health tech world what this all means, but Joe and Sally patient, they don't know. And who is telling them, whose role is that in the healthcare system? It's not the physician. He or she doesn't have time. It's not the social worker. There's definitely some bigger issues, challenges there. Whose job is that to educate the patient on knowing about their data and their health record. I don't know. It's a critical that needs to be addressed for sure. But again, I am so excited about it. I think that the more information the better as I alluded to earlier in our talk here, everything's out on the internet. Everything's there. Information is power. We have access to it now, you have a very much more empowered patient than you've ever seen in the history of healthcare. So, let's maximize that.
Dr. Dave Levin: Well, I think that's really terrific and couldn't agree more. The other aspect of this that I find just really exciting is, let's be honest, in the typical clinician patient encounter, we have a discussion, we make some recommendations and the patient leaves, and we really don't know what happens after that. And so I really liked this idea that we might be able to close the loop more, have a better sense of what the patients are really doing, what they're really experiencing. The side effects from the medication or the treatment, all those sorts of things. And I think they have a lot to contribute in terms of their reporting and I would extend that to the people around them as well, their caregivers. And I see this as a really exciting frontier. And I get a good laugh when I have this conversation with more conservative clinical colleagues and they'll start to talk about, well, they might put wrong information in the medical record and then I point out to them, yeah, we've already been doing that since the dawn of time in medical and healthcare. I'm not sure that is true. Exactly, I think we can overcome that objection. So you've offered us such a wonderful personal and compelling window into your own story and the work you're doing. I suspect this last question may be hard for you to answer, but what's the one thing that you think everyone should know about health or healthcare?
Stacy: It really sums up everything that we've talked about and that you as the patient are in charge of your health, that you as the patient should do everything in your power to create the best possible outcome for your situation. Control the things that you can control all the way. I mean, when I was diagnosed and I wasn't sure, I had a less than 10% chance of living five years and I just got to five years. I did everything in my power to beat that cancer into the ground. And if I was not going to make it, at least I could have said I did everything I could. I fully committed, I fully focused and that's what I want everyone to do. I want everyone to take advantage of every tool out there, every technology, every bit of knowledge and when all possible, take charge of their health and know that your healthcare is a partnership between your physician, your nurses and you, your doctor isn't going to save you, you're going to save yourself under the guidance of your healthcare team.
Dr. Dave Levin: Yeah, I couldn't agree more. And I would say for those of us who have chosen to be part of building and the healthcare system and delivering, we have a responsibility in this as well, which is to help build the systems and the approaches that allow patients to do that, to partner with us, to meet them where they are. Because people have different abilities, interests, capabilities, and those vary over time and circumstance. And this is not a one size fits all. And so there's a lot of work to do all the way around. And as we talked about earlier, bringing all the stakeholders to the table, but think that through is a critical aspect of this. Stacy, so thank you so much for sharing so openly and with such heart with us today. We've been talking with patient experience consultant Stacy Hurt. I suspect our listeners will remember this podcast for a long time to come. Stacy, thanks again for your time today.
Stacy: Thank you Dave and Geeta for everything that you do as physicians, especially in this difficult time. Everybody on the front lines, I couldn't be more grateful for as a patient, as a caregiver, for everything that you do. So thank you.
Dr. Dave Levin: You've been listening to 4 x 4 Health sponsored by Datica. Datica, bringing healthcare to the cloud. Check them out at www.datica.com. I hope you'll join us next time for another 4 x 4 discussion with healthcare innovators. Until then I'm your host, Dr Dave Levin.
Dr. Geeta Nayyar: And I'm your cohost, Dr. Geeta Nayyar. Thanks for listening