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EP130 Patient-Centered Care and Health Literacy with Alyson Lippel
Aman: Folks, welcome back to another episode of the "I Am GPH" podcast. Today we have Alyson Lippel. Alyson has over 10 years of experience in clinical research with skills both in scientific research and clinical operations that have been fortified specifically in therapeutic areas. Additionally, her academic history is very interesting. She has a bachelor's of science in neuroscience and Psychology, and a master's in bioethics. That has given her a very unique view of the world of healthcare with this new perspective. Alyson is currently pursuing a DRPH, or a doctoral of public health, here at NYU GPH. But rather than hearing more from me, we're excited to have Alyson on the podcast to hear all about your journey and evolution. Alyson, welcome to the "I Am GPH" podcast.
Alyson: Hi Aman, thank you so much for having me. I'm so thrilled to be here, and looking forward to talking to everybody about patient-centered care, and health literacy, and a little bit about myself.
Aman: I love that, let's start off. Let's start off with the whole concept of patient-centered care. What was your introduction to the world of patient-centered care like?
Alyson: Yeah, so it's kind of an interesting one, and more of a personal journey. There is a career aspect to it as well. So, I work in the pharmaceutical industry. I've been there for about 10 years, specifically on the oncology side of the business. About, in 2014, my mother was diagnosed with breast cancer. So, that was a, a very shocking time for my family, and that was the first time that I was able to see what it looked like in the patient perspective, as she went through her treatment journey. So, I was able to see how that looked from both a physical aspect, an emotional aspect, and a psychological aspect, and it opened my eyes, actually, to where the gaps are, and the needs are within patient-centered care. So, taking that back and having that personal experience, I took a step back at my career and said, "what can we be doing better," right? From a private industry perspective. And, it really was about how can we deliver for patients more holistically? A lot of people look at the pharmaceutical industry and think about, you know, we're pushing clinical trials, we're pushing drugs, but it really is about the education piece as well, and then supportive tools. So, that was my first experience, and having that fire ignited in me, I was like, "I'm gonna go forward. I'm gonna make a difference internally, but also deliver for patients on a new level."
Aman: Wow. Personal, personal thing happen in life. And then, that's what got you into the area of focus, and now here you are working, because there's, you know, there's so many questions we have around that. I feel like most hospitals are designed around curing a patient, right? Then why is this whole, this entire concept of patient-centered care when the hospitals are meant to cure a patient?
Alyson: Yeah, and it differs, right, from therapeutic area to therapeutic area, right? Depending on the disease that you're coming in with, or the indication that you're looking at. So, from an oncology perspective, really, it's long patient care, right? We're looking at a patient from coming in, diagnosis, treatment, and then after treatment, right? Because, oncology really is this journey. When you're looking at something like cardiovascular health, there's also a long care plan, right? So, when you're going into a hospital, like you said, you're thinking treatment, how do I come in? How do I get treated? How do I feel better and leave better? But, it really goes beyond that, and I think that's a new view that we're seeing both in the private industry but also in the public, right? So, the health industry from a hospital perspective is how can we continue care outside of the physical structure, right? So, we bring patients into a hospital, we're treating them, we want them to leave feeling better, but then what can we do to arm them with the tools, with the education, with all of those things to make sure that they're continuing care, and continuing to be well outside of a hospital. So, it really is like a mind sift, a mindset shift, that we, kind of, are seeing in the healthcare industry.
Aman: So, I'm really curious, you know, you mentioned this. In a world of doctors and nurses where they're being asked to treat patients with less time, it kind of feels like an assembly line to me. So, how do we protect that time and give the patient the attention that they deserve? Because to me, it feels like right now there's a separate department, and the doctors are doing a separate job, when it should be more holistic rather than anything, right?
Alyson: Yeah. It's a really good question, and I think what we're seeing is hospitals are inundated, right? We have physicians that are seeing more patients, they're getting paid less money a lot of times, right? And, then they're just being flooded, and our nursing staff as well. So, it really becomes a collaborative effort. And, what I mean by that is not just the hospital, right? There needs to be other people that are getting involved in health, right? Private industry being one of those, like where can we support the hospital to ensure that the patient experience is truly what they need and what they should have, when they're going through a lot of these devastating diseases or indications. So, it really becomes a collaborative effort. And, I think there's also nurse navigators, there's patient engagement specialists. So, you'll see like the nonprofit, so, for example, American Cancer Society, right? Like, that's another group that can easily come into this paradigm, and start supporting a hospital and a physician. And, ways we can do that really are just the educational tools, right? Making sure that health literacy is there, that people are understanding when they're coming in for a diagnosis, what's going on, or at least having a basic understanding, so that the time that they have with the physician can be utilized effectively. They can ask the right questions, they're armed with the information. And, it really is about how can we all partner together to make sure our patients feel heard, and feel like they're being respected for the time that they have in front of a physician or a healthcare professional.
Aman: You mentioned this thing called health literacy right now. Can you explain what health literacy is?
Alyson: Yeah. It's a really cool thing. So, health literacy is the idea that people are literate, and have a very basic understanding of their health, and what that means to them when things go wrong, right, within their health. And, it's different for everyone. We like to say that health literacy should be at like a sixth grade reading level, but it's really about each individual. And, I think that's a misconception that we see a lot, is that, okay, if we're gonna put tools, or an informed consent, or information around, I don't know, breast cancer, right? In the world, what should it look like? And, just blanket statements should not be applied to people. So, we shouldn't just have one tool. It depends on people's culture, it depends on their background, and the language that they speak first, right? English is not everybody's first language. We live in this beautiful melting pot of the US. We should make sure that our tools are effective for all people that live here. So, it's the idea of having that educational status for health, but for, tailored for the people that we're trying to help, right? So, health literacy, a lot of times what we'll do, is make sure we're looking at things, like I said, informed consent or just informational stuff. So, breast cancer, what is it? So that, when someone gets a diagnosis they can read a pamphlet, or watch a video, or, and that's something to think about too. Not everybody's a a written learner, like, people like to see visual learning as well. So, there's so many components of how health literacy can be built out, but it's extremely important when people are dealing with something so personal as their health.
Aman: Wow, it seems like even though you're in a DRPH right now that your role is highly multifaceted. It involves design, it involves understanding human behavior apart from the health aspect of things, which is more of a, you know, a professional setting or something that has more academic jargon to it. I'm curious to hear when you went into this industry, what about the industry was eye-opening to you? What surprised you? Or perhaps what still surprises you right now?
Alyson: Yeah, and I've had a journey through the industry. So, through pharmaceuticals. So, I came in very science based. I came in as a clinical research scientist. So, my main job in the beginning was designing trials, and also kind of understanding the therapeutic areas. And, I have a background in neuroscience like we talked about before. So, it really was science focused. I didn't get the human texture to clinical research, right? I was kind of just focused on writing protocols and seeing things from a data perspective. As I grew within the industry, I started to see the gaps, right? And, started to see what we needed from a behavior standpoint, from an educational standpoint. And, I've had the great opportunity to have multiple roles within the industry. And, I think that's really helped me. And also, my education outside of industry. So, I am an NYU alum, I've got a master's in bioethics. That was a great way to kind of open my eyes to how we should be looking at science, a little bit differently in clinical trials. So, I think it's been a few things for me, but really, that personal experience tied in with the education, right? So, having that master's, and then just living it. So, designing these trials, getting the data back, but then learning from my external counterparts. So, I pride myself on making really good relationships with the physicians in the hospitals that I work with. And, one of the areas that I worked in was CAR T. So, cell and gene therapy, new area, very innovative. I worked in the pediatric space, which was new, and something I, very dear to my heart. But, I became very close with the very few institutions that were running this kind of trials, and this kind of science. And, just hearing from them, and like, being open, right? And, this is what it is. It's about collaborating, not just in these silos of private versus public, but really listening to each other, and hearing what we need to kind of make the patient experience more effective, and just better for our patients. And, from these physicians, and these nurses, and just the data, and the staff that we had there, being able to understand that we really were missing the mark, and how could we really bridge that gap. So, I think it was that collective experience, not just my industry experience, that opened my eyes to everything we could be doing.
Aman: So what's missing now? What do you think is missing? I know that you're in this every day, so there are things that need to be solved, but what's missing? What's the, what are your eyes on in terms of patient-centered care?
Alyson: Yeah, I think consistency is a big one, right? And, I think translatable consistency across industry partners. So, I'm one, right? I work at one company, but just having a vision that could be translated across partners, so that it's consistent, right? A patient, regardless of which therapy or product they're on, if they go to NYU as a hospital, they're getting the same kind of care, the same education, the same understanding from a health literacy standpoint. That is really important, but I also think, it's just gonna be about listening to patients more directly. So, it's a very fine line, especially in the private industry, of how we can interact with patients. But, I think we need to break down these walls, and just understand that they are the people we are working for, whether it's a hospital, whether it's private care or private industry, you know? We need to start listening to what they need. And, just from the few instances, I did a really great project on patient insights a few years ago, in multiple therapeutic areas, and worked with a really great third party company that I won't name, but they were fantastic. And, just having that opportunity to listen to them, so we did interviews, so I was able to actually listen and be there silently. And, then we also did surveys. And, here, just right from a patient, what's missing? What are they not getting? I think this is invaluable, and I think it's something we should be doing all the time. There's no reason for us not to do it, because if we really and truly want people to be better, and be well, and own their health, this is how we're gonna do it.
Aman: That's a soundbite right there. I wanna go back to health literacy a little bit more. How effective is the current system of health literacy?
Alyson: It's not. Very short. In a short answer, it's not. I think we are just on the brink of starting what health literacies should look like. Again, I think we've kind of cookie-cuttered it, right? It's a term that people throw around a lot. People are like, "Health literacy, yeah. We're doing this, we're doing great things." But, if you dive into it, are they actually hitting the mark, right? Or, are we creating tools that are very cookie cutter, like I said before, where it's, "Okay, great, it's at a sixth grade lead reading level, but it doesn't help the Latinx community, or it doesn't help the African American community." It's in a language that many people don't understand, our Asian community, right? So, I think it's important to really kind of peel it back like an onion when you're looking in health literacy. So, there's this great term, right? Health literacy. What does it mean, right? The understanding, the education, the knowledge, but it's gonna be different every time you take a layer off. For each community you're trying to serve, for each therapeutic area that you're looking at, because there is a general understanding out there depending on what we're looking at. So, let's say cardiovascular health, that's pretty big. People understand that the American Heart Association is out there. They're talking about why you need to walk every day, right? So, it really is taking the time to sit down and say "who are we trying to help, and how can we help them?" And then, partnering with the right people. So, we did a project internally about Lexicon, right? Words that we use for one group of people is not gonna resonate with another group. So, it really is about sitting down with those people, and saying, "how would you say this to your mother? How would you say this to your father, if they got this diagnosis?" And, making sure that it's translatable. So, because if we're missing that, and we're just putting words out there that aren't gonna make sense, it's not gonna help anybody.
Aman: I like the stuff about the Lexicon, that's very important. What is the current standard? So, what is the gold standard that exists right now? What are some of the best resources that we can actually see that are existent when it comes to health literacy?
Alyson: Yeah, and I honestly, I'm not even sure there is a gold standard yet. I think we're still trying to find it. I think when you're looking at health literacy, I think the best thing to do is to go to those bigger associations, your nonprofits, right? They're really trying to make the mark, and reach the most people. So, for us, the ACS, right? The American Cancer Society. If you've got Leukemia, leukemia lymphoma, right? Going on there. But, even then, like, I've worked with all of these people, the multitude of resources in the DNI kind of perspective, right, from diversity are just not there. And, I don't know if it's just resourcing, or if it's time, or if it's just things like that. I think it needs more of an effort universally. And, I think we're gonna see it when we get more people in public health and pushing the envelope, and really getting out there. But, I think there's a lot of work to do. So, I would say we're not at gold standard yet. I would say we've got some people that are making really great efforts, but we have work to do for sure.
Aman: We'll have you back when that time comes. Do let us know.
Alyson: Okay.
Aman: We are excited to see that. Let's go back to you, Alyson. What, tell us about how your, you mentioned your degrees, you know, I did bio, did neuroscience, psychology, bioethics. What does that add to you today, when you're operating in this environment?
Alyson: Yeah, I mean, I've been blessed to have really good education, and I know that's not something everybody has the access to. So, I don't take that for granted. And, I think my degrees really, kind of, give me these diverse perspectives. So, neuroscience being my main, right? I have a BS in neuroscience and psychology. I love the mind. I love how we learn. So, health literacy was an easy fit for me, because it really is about how we're learning. But, then the bioethics degree from NYU really was a game changer for me as a career perspective, but also just about how I look at health, and not even realizing that I was gonna have this personal journey with my mother when I was getting my degree. So, it kind of just lined up very nice. And, I think the bioethics degree has become very handy in private industry. You don't see a lot of people with a bioethics degree. A lot of people are like, "what is that? Can you explain what bioethics means?" So, I think it's helpful to have that perspective, and be able to kind of offer a different viewpoint, when I'm sitting in meetings, right? And, saying, and asking people to stop, and to pause, and say, "did you think about this? Have you taken a step back?" And, I think that's been really great. And, the DRPH, which I'm so excited to be in, it's my first year, it's a new program at NYU. So, this is only the second cohort of students. It's just, it's so fulfilling at the moment. It's allowing me to kind of take another step further and think about public health, right? And, just think about how from a private industry perspective, how can we partner, how can we be good collaborators? And, it's not something you typically see when you're talking about public health. So, I'm just really excited to be in the program and to see where it goes. And, I'm meeting so many wonderful people, not just from the US, but globally. We have a lot of global students. So, I'm learning, and I'm like a big nerd so I love to learn, but I'm learning so much about health outside of the US, right? So, where are the differences? Where are the similarities? So, it's just been a really great experience. I can't say enough about the program. It's been really wonderful.
Aman: What got you to the program?
Alyson: Funny enough, I had, so I have some really great mentors in my life. I'm also a mentor for NYU students. I do the program through NYU. So, I think it's really important to have a good mentor. My mentor said to me, "Have you thought about A DRPH?" Because, I was actually considering a Pharm D, which is very different, very science-based. And, I said, "what's a DRPH? Like, you know, I had not heard of the degree, I had not really understood that at that time in my life. And, I took a look and I was like, "Wow this is actually everything I care about in a program." So, I took a step back, and started looking into it and as soon as I knew NYU had it, I was like, "I'm going back. I love NYU. It's a really great school." So, yeah, that was how I got here.
Aman: What's next, Alyson? What excites you? What excites you now you're in the DRPH, you're at one year in, what's next for you?
Alyson: Yeah, I'm gonna take on the private industry, and change how we do medical care. That is my goal. That is my mantra. I feel like with armed with this DRPH, I'm gonna come back and say we need to do things better. So, I'm gonna be that internal advocate for patient-centered care and holistic care. I'm gonna work with the relationships that I've made externally with those hospitals, and make sure that we're delivering tools for our patients. I just want patients to have a better experience. Having been a caregiver, I know how rough it can be. I know how many people are suffering in silence because they just don't know who to ask, and they don't know what to say. So, I just wanna make sure that we are tackling this from every aspect that I can tackle it from. And, I'm just gonna be that trailblazer I think within industry.
Aman: Trail blaze all the way, Alyson. This was an awesome, awesome episode. Thank you for sharing all your insights. I'm sure a lot of us are educated on the importance of health literacy and how we can influence it. How, what can, what can some of us do to advocate for this?
Alyson: Yeah, I think it's, it's really about just being there to ask the questions. If you're a caregiver, if you're a patient, don't be afraid to ask the right questions. Don't be afraid to ask for more information. But, also try and educate yourself. And, like I said, we may not be at a gold standard for the materials that are out there, but go online, start looking, make sure that you're coming armed with information because you are your own advocate. You have to advocate for yourself when it's your health. So, I think that, and then also, if you're in a position to partner with other industries. So, if you're in the healthcare industry, if you're at a hospital, if you're in private industry if you work for our lovely patient engagement partners and nonprofits, start working together. Really start being that change movement that we wanna see within health literacy and patient-centered care.
Aman: Lovely. With that, thank you for tuning into another episode. Alyson, thanks for your time. This was truly an awesome podcast.
Alyson: Thank you so much.
Aman: Bye everyone! Take care.