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Transcript

Cody Ortmann: What would CME look like if we address the the entire patient journey? Not just from diagnosis to to relapse or diagnosis to, unfortunately, passing: from the minute they're diagnosed, the entire journey and everything that takes on and even a little bit afterwards.

Katie Robinson, PhD, CHCP: Hello and welcome back to the Alliance Podcast: continuing conversations. I'm Katie Robinson, vice chair of the Almanac Editorial Board. Outside my volunteer role with the Alliance, I lead the Instructional Design and Analytics department at Vindigo Medical Education. I'm a mom of two girls and one dog, and given my line of work, I have pretty much become the person within my immediate and extended families who offers advice on navigating today's healthcare system, which, of course, is no easy task. I think it's probably true for a lot of our listeners today. So, the most important thing that I think in this role is to help our sharing of experiences, which is why I'm really excited to welcome today's guest, Cody Ortmann. In his last two articles with the Almanac, Cody has shared his personal experiences to advocate for equity in care. His articles on disparity in care and addressing well-being emphasize the importance of empathy in continuing medical education. He's here today to expand on his article series, talking to us more about his personal experience with occipital neuralgia and how the healthcare CPD community can better educate providers on cultural competence. Cody, welcome to the Alliance Podcast!

CO: Howdy Katie, excited to be here.

KR: Great. You've been a part of the healthcare community for quite some time. What do you think are the most meaningful experiences that impact the way that you approach continuing medical education?

CO: I think the things that I'm going to remember when I retire, or at the end of my career or when life is over, if you will, I'm not going to remember all the trainings and the books I've read and the magazine articles and things like that, but the things I'm going to remember are the times and opportunities where we as a community came together to do something, to address some type of issue. When providers have reached out to me throughout my life, when most recently, for example, when my dog, Huck, recently passed away from cancer, a lot of the provider community knew and reached out and checked in on me and things like that. Those are the moments I think that are key, and that I'm going to remember and that are going to be the most impactful. And I think apart from that, when I was thinking of this question last night, I really began to realize that, you know, we spent so much time at work, and we've seen those statistics before: that we spend more time at work than we do at home. And so, what impact of that is, and how much of more of a community we really are, when it comes down to it.

KR: In your articles, which our listeners can check out in the show notes, you positioned yourself as the example patient and brought about a more well-rounded view of what the patient can benefit from continuing education. What inspired you to write these articles from this unique perspective?

CO: I even been thinking about writing this, the first article, and definitely the second one, I think actually the second one in the series was probably the first thing I had come up with, but there was something in me I knew, that's not where I wanted to start. I think having the opportunity to write about the journey with occiptal neuralgia and facing that, and how long of a years-long journey it's been,  and I think it was a good start, but the inspiration really was kind of multi-factor or two-fold. One, I knew with everything going on at the time, that part of the answer for me, personally, in dealing with everything and going through everything, was joy and helping others and trying to influence or encourage others who may have gone through something similar, or have friends or family members or even the neighbors going through something similar.  I felt that being in our community and being on the supporter side, I feel like I have a platform at times to use, and there's a responsibility, I think, for those of us that have that platform to use it appropriately. And so I with those two things, I was inspired to to share and write those articles. And then also too, I think one of the things that I love about our work and our communities every every now and then, every so often, we hear stories like this, we hear from one another and our experiences in our daily lives. Like the first article kind of goes in, addresses COVID-19, and different things that came out and that are accelerated now more of a focus within our community, and I just thought, especially with occiptal neuralgia, was that if I can go through this living, where I live, doing, where I'm at, having the access and the privilege, to be completely honest, what's it like for somebody that is actually, truly going through it with something more serious than just headaches and nerve pain, in terms of cancer, maybe for a listener who doesn't work in oncology, for IBD or something that's chronic life lifelong?

KR: Yeah, yeah, we are in such a unique industry, right? Our end goal of improving patient health, when all of us ourselves are patients too. So I think that we provide a unique opportunity to share that within our industry.

CO: I agree, and I think that's one of the things that we forget sometimes. We talk a lot about outcomes and storytelling, and I think part of our personal stories has taken on a bit more of a focus in the last year or two in terms of storytelling and bringing in our lives or personal experiences through the work that we do in the support and we talk about patients and providers and caregivers, but I think you make a really good point that sometimes, or often, more often enough, we forget that we're a patient too.

KR: Right, right, yep. So that's why we, you know, we appreciate this series so much, and so in your first article called "Addressing Inequalities, Access and Communication: One Supporter's Personal Story," which was a very unique title for me, I really loved it. But, you advocate for educating healthcare professionals on cultural competence, empathy and the importance of equitable care delivery. So these are all, I think,  three distinct things, and you really do focus on each of them throughout the article. So, if you could first start by maybe telling our listeners what you mean by each of those three things, and then also maybe what types of CME programs you think can help achieve these objectives, to educate on these points?

CO: Um, but empathy is definitely the easiest one, because I share in my experience where I went to the local urgent care, and the clinician that saw me there wouldn't even let me in initially, and then I had to talk to her, and I was like, "Okay, well, I'm just gonna go with the ER. " And they told me that at the ER, they weren't gonna do anything, and might as well just go home. And I think after talking to her for a couple minutes, she finally saw how much in pain I was and how bad I really was just having with everything. And she told me, even before she brought me back, she's like, "Okay, well, I'll see you, but we don't believe in that here." So immediately, right before, one, I kind of kind of argue and prove my case, I felt kind of like a lawyer less than a patient trying to get treatment. And two, I'm going to see a clinician that doesn't believe in what I've been told for a year and a half that is actually the primary issue. So I think that's a great case of empathy. In that case, for me, even if she had no experience with occiptal nuerolgia or hadn't seen a migraine patient very often, or even, to use her own words, if she really, truly didn't believe in it, that that's fine. I think if she had just kept it to herself and said, "You know what, come back, we're going to do as much as we can, as best as we can for you. We see that you're in pain and that you're struggling, come back and we'll just take care of you, and we'll go from there. And we're a team." I think, just having that aspect of empathy and being seen as the patient, rather than just more as a nuisance that was in her waiting room regardless, because it was empty, right? It wasn't full that day. I think that's the importance. And I think, you know, and with my career in the industry, a lot of it is focused on oncology, and I think empathy too, with a cancer patient is just checking in and asking, "How are you how are you doing?" Or, making sure that the clinicians are checking in on what are their goals before they give them treatment? I know we've talked about that for years, probably 10 years going now, but I still hear stories, you still see evidence where some of that's not going on.

KR: Right.

CO: So I think for empathy, that's the thing. And the other, the other thing, I really quickly on empathy, not just stick on that one. Please remind me of the...

KR: Oh no, it's, it's so important though, you know. And I think it's sometimes it gets lost in the education that we do, and it shouldn't, because that interactions between providers and patients. It can, you know,  give the sense of well-being, and it starts the level of satisfaction of care, and patients who are more satisfied are happier and probably doing better. So, such an important topic. But anyway, continue.

CO: No, I was just going to add I was fortunate to go to a country concert in Alabama two weeks ago, and it was all up-and-coming female country artists, and this kind of jumps to the second article, so I apologize to the listeners for jumping ahead a little bit, but one of the performers I follow on Instagram, and she shares her own story of some of those topics that I address in the second article. And I got to thank her and be like, "Thank you so much for posting what you do on on Instagram and sharing your own story." And I got to tell her why, and I knew I wanted to tell her that and have that quick second, because it was a meet-and-greet, it was just like shake everybody's hands, take the picture and go, but I was able to have an extra minute or two, and she told me how proud she was of me, and at the end, and for the listeners here, I don't think I was looking for it, I don't think I was looking for that affirmation, but I think connecting to empathy and being heard and seeing me and telling me, I if it felt good. And I think that empathy, that's the key whether we're the patient or friends or family of the patients, that we as patients, regardless of what disease or issue that we have, we want to be seen by our clinicians, regardless if they agree with us or not.

KR: Right. And I think too, you know, sort of along these same lines with empathy, is that sometimes I think about myself, given my profession, right, I tend to go into office visits, either for myself or for my kids or, you know, my mom or my brother, and I'm pretty knowledgeable, right? So I pretty much know how the conversation I expect it to go in my mind, I can play it out. I've done my research, and I think I know where where things are going. But I wonder, for those people who don't have that knowledge and that base like we do because of our professions, how much a lack of empathy, how much farther that must go, because they already probably go in feeling nervous, not knowledgeable, but then to have a provider that doesn't treat them with respect or listen to their feelings like that, just must make it so much harder for them to gain trust in their providers and the healthcare system. And I think that that's a really, really big challenge.

CO: Absolutely, and I think that goes into one of the second points that you brought up for me to ask in terms of cultural competence. So I live in Boston, I moved to Boston at the height of the pandemic, back in March of 2020, right before everything shut down, and so my neighbors quickly became my friends and my community and my family and they're from, he's from Lebanon. His wife grew up here, but she moved over there, then they came back. Unfortunately, she got diagnosed with stage four stomach cancer about a year and a half ago, and just talking to them about how their traditions and their cultural background, which I was aware of because I've lived and spent a lot of time in the Middle East, in all different countries over there, that area of the world, the doctors weren't really listening to them, and in terms of empathy and working together in cultural competence, and they they just were going like textbook, or acquiring the guidelines and be like, "The guideline says this because the patient is assuming these characteristics, or this is, you know, stage four, and this is what we should do and duh-duh-duh-duh-duh-duh," if you will. And I remember telling him, "This is what you need to do," encouraging the husband, "this is what you should ask this and do these things." And I consider him as a an extra father, an adopted father, if you will, but I remember just having for me to step back and think, he wants to listen, he wants to help, but whether or not he takes it, it's because he's very traditional from where he's at, and very tight knit community, family. I think cultural competence too, maybe not so much true cultural but for me, sometimes when I go in and see a clinician, it can be uncomfortable, right, being being a gay man, if the clinician says something and even just that little one thing might make me uncomfortable, because they might not agree with me or my life, and I think, again, some people might consider cultural, some people might consider something similar, close. But I would love all clinicians to see what I see, to have that that confidence of how to treat me appropriately, or how to speak to me appropriately about things. I don't want them to jump to conclusions every time I come in with a cough, if you will, and things of that nature. And I think the other thing in terms of cultural competence is depending on where the patients are at in the United States, you know. That we all know can affect insurance rates, what stage of the diagnosis you get diagnosed at, especially  women's health care, and English might not be their primary language. So how do we help clinicians do better in treating the patients that we all serve? 

KR: Yep, these are all very, very real issues. And if I think you're sort of segwaying into the next which was equitable care delivery, you could just mention that, and then we can get to how CME can address these issues?

CO: Yeah, equitable care, I think, has always been something I've been interested in. I think even before I was able to identify it as true equitable care. So remember when I started in the industry years ago, wanting to understand why some patients got diagnosed later, why some patients don't have the access and that the rest of us do, and anything of that nature, I think, connected to my own personal story, right? Thinking that I live in the Boston area with some amazing hospitals, which I won't name, and having come from living in a very good zip code, here, I will admit to the listeners and to you, I was a bit foolish in assuming that I can go anywhere in my meeting area and get the care that we've been told, or I've been told, that are associated with these names in this area, and yet, we know now from those articles and me sharing that that's not not the case, and I think that made the work that we do, or at least that I do in the in the industry as a supporter, so much more real because if I can go through that in in some small, minute way, and I know that a cancer patient, perhaps out in the middle of the country, in Arkansas for example, just off the top of my head, is going to experience it, no offense to Arkansas or anybody from there, or a person from a different ethnicity and cultural background that experienced to such a different degree, right? I think I just was able to to see it and experience it in a small way that that made it that much more grateful for me and wanted reunited that passion, and I think, address it, and then figure out what we can do. 

KR: Taking back to your Arkansas example, sometimes the issue is that the patient just can't get there. They can't get they don't have a car, they can't take public transit, the doctor's office is just so far away, you know, I think we heard about this at the AIS meeting in September, right, where there's just some patients that their nearest specialist is so far away, their specific example was for oncology care, that they would rather just see their PCP, right? So now it's the role of the PCP to be able to talk to their patient about their cancer therapy and like, how much burden do we actually have to put on the primary care provider to know all the things about cancer, right? It's just, how much can the PCP actually understand? So it's just a very, a very difficult problem. I was on a call with a faculty member the other day that just said, "The problem with access to care sometimes is just nobody can pay to get the patients to the care that they need." And that's just step number one, right, not to mention, if you're bouncing around from specialist to specialist, like you sort of went through, right? Like, how many copays is that, if you even have insurance, right? Like, how much expense is that adding up? So...

CO: Exactly.

KR: I think this sort of the second part of that original question where I asked you about cultural competence, empathy and equitable care delivery, was how you envision CME programs can sort of address some of these issues?

CO: I was hoping you want to throw such a hard ball question this morning. I think part of my answer, you know, the benefit that I have, I've always felt being on this side of the industry as a supporter, is that part of the fun for me is that I get to come up with ideas like this, and for the most part, talk to the provider community, go to presentations, look at abstract posters. So it's things like that try to help, they've been connected. So oI don't think I have that answer, or if I'm the expert to answer that this morning. I think too, part of the benefit as being a supporter is that I get to come up with these kind of ideas, issue an RFP or an REP or CGA, we all have different names for them, and put them out there for the provider community to to answer, but I think sometimes it's beneficial for me to be on here, on the side again, come up with these ideas, and for the provider community to say, "Hey, this is super innovative. Thank you so much for thinking on this, putting together. This is how we're going to do it. This is how much it's going to cost." Or, you know, "Cody, actually, we don't understand it, or where you're going, or you're just kind of off the mark."

KR: I think that, you know, empathy, actually all of these things, especially the empathy and the cultural competence, it's got to come from the patients, right? We've heard about this for years, just integrating patients into, not just a couple videos about their experience, but integrating them into the planning committee of these activities, right, making sure their voice is heard. You know, at Vindigo, we've done countless of these types of programs, and the feedback is always like, "Thank you so much for bringing it from the patient's mouth." They don't want to hear doctors, don't want to hear nurses, don't want to hear from other doctors and other nurses about what they think their patients experience. They want to hear it straight from the patient and it is such a way to teach empathy a lot of times. You know, this doesn't get taught in medical school, right? So, like the base of their training to become a practicing clinician, and they're not being taught that important piece in their medical training, you know? And another thing we heard at AIS right was, was this sort of surge in APPs and NPs and PAs and their role now in the healthcare system, and how much even less their training is, right? So a lot of their empathy is just learned after they're already practicing. So the more that we can incorporate, I think, the patient voice into CME programs, the better it's going to be at getting at empathy, and even the cultural competence, because hearing those stories about maybe why somebody from a different culture doesn't want to receive a certain type of treatment, or things like that. I think those types of experiences can really address cultural competence as well. 

CO: That brings up something I remember talking about in our community probably three or four, maybe five years ago. It's just, what about the idea when we support symposiums or when the podium is put together? Just what the impact might be in terms of cultural competence or anything that we're talking everything we're talking about today, what the makeup looks like if we just start using different KOLs than we are normally used to, and it looks different. So if we're working in a disease area that we know is specific and it has a high proportion of African Americans. Why not include someone that looks exactly like that patient on that panel? And I think, I think sometimes and not always, it's definitely disease specific, but we might be trying to over-solve for something like like that, where a simple, small step could just be, how do we change, to your point, who's doing the talking and doing the instruction?

KR: Yeah.

CO: And the other thing I've learned this year too, less about how CME can address it, but be a partner in addressing it, because I've met with a lot of patient advocacy groups and with my patient advocacy team, and my patient advocacy team might have less budget in a specific disease area, they might have more budget than I did a specific disease area, but they don't always have the ability to do everything that they want to do with each patient advocacy group, and specifically we know,  health equity has come up a lot in the last year, access has also come up a lot, and I've reached out across the aisle to my patient advocacy team to be like, "That's not a priority. Let me handle it. I've got the budget." I can it's not traditional CME in terms of a webinar grand rounds., but how can we partner together across the aisle to close the gap appropriately, and that's something we're still looking looking into. And I so I think that's part of the answer is yes, CME can be the answer or part of the answer, but it's also part of the solution in terms of helping to be that network. 

KR: Sure, yeah. And I think any opportunity to bring patient advocacy groups in collaboration with faculty to then educate our audiences, our practicing clinicians, right? I think that that is, you know, bringing in the recognition from the advocacy group and bringing in the doctors that need the education. It's just, it just amplifies the impact of of that, that education. So, you know, I think that that's a great point that you brought up there.

KR: Alright, so before we continue, we'd like to give a quick heads up to our listeners. In this next part, we'll be discussing topics that may include domestic violence. If this is something that can be difficult for you, please feel free to skip ahead or pause the episode. Your well-being is important to us, so please make sure to take care while listening. So Cody, in your second and most recent article, "Addressing Mental Health and Well-being: One Supporter's Perspective," you shared a personal story about your experience with a nurse asking a question about safety in your relationships. This was an incredibly vulnerable and brave example to give, so thank you for sharing your story. How do you think healthcare provider prioritization of mental and emotional well being can assist others in situations like yours?

CO: Ask this question to more patients, or having a bigger focus on mental health, regardless if it's someone going through something like I did, where that nurse was asking that question and I actually had an honest answer to tell her that was really directly to that mental health check in, if you will, as related to the relationship of the things that were going on, or if it's just the clinicians asking, you know, the PA or the MP, like we were talking about couple minutes ago, having more of a role in oncology care, simply asking their patient or the nurse taking the vitals., "How are you doing mentally today? How are you doing mentally with the treatment?  How is your cancer diagnosis affecting you mentally?" And maybe, potentially healthcare in the future, pie in the sky idealistic, is there's a patient that goes back, and someone goes out and talks to the caregiver, loved one and ask them, "How are you doing?" or "How's the patient doing mentally? How's it affecting you guys? "

KR: Yeah.

CO: Things like that, I think for me, the kind of back to my personal experiences before I got into industry, I had worked in mental health care for I think, seven or eight years, so I had been around nurses. I asked patients that question myself. One of the clinics I worked in before I started Genentech back in 2014, you go even in the men's room, you go on the the bathroom and there's a sign on there, "Do you feel safe? Do you if you feel unsafe? Or is this going on? "You know, "There's help call this number" and things like that. And so even for me, for someone that had been around it for so long and had seen it and knew, if we will, whether or not it had actually manifested as something that I needed to do, or a question to answer of anybody out there in the world ar part of the segment of work, I would have thought it was me. And I think too, the thing is that now that cancer patients are living longer, the the other issue that I'm curious at learning about more and need to discover is,what happens after they after they're done with treatment, right? What's the mental aspect of being in recovery or having, still having cancer, but just not being on treatment?

KR: And being in fear that it might come back, right? Like that?

CO: Exactly.

KR: And then, and I think, when you're taken out of the the care system because you are cured, right? Or you think you're in remission, I think that it causes a lot of anxiety for a lot of patients, because they're losing sort of their security blanket, maybe they went from going every three months to get scans, and now they're every six months, and what do they do in that, that second three months, not having that ability to check in is, you're right, like, just like, "How are you doing?" And in, you know, today's technology driven world, there should be better solutions, I think, for that.

CO: Absolutely.

KR: That an email is it a text message, just to check in.

CO: And I think not waiting until the end, when it's over,  because when my dog got diagnosed with cancer, Huck is his name, I posted something on LinkedIn about the story in the background and I think if our listeners are interested in hearing more, I can plug the third articles. There's going to be more coming out with that one, but my friends and family members and the neighbors checked in on me. I think the CME/CPD community definitely called me and emailed to check on me. You know, unfortunately, I missed AIS because of that this year. But each vet that we saw, regardless if it was the regular one or the one in the ER that we were, felt like at the end, we were at every three days, they never called. They never asked how Huck was doing, how I was doing, if I needed something, or if they had resources for me right, as a caregiver, as a parent of a dog, until he had passed, and it was like the second day when a social worker at the emergency vet actually was like, "Here's these resources. I'm here if you need anything, and here's this recovery group." Well, not recovery group, but a group for people to come and talk to experience the loss of their animals. And I just was like, "Why did you wait?"

KR: Yeah...

CO: Like, and I think that's the other thing with with mental health and everything we've talked about this morning, is for clinicians and for us not to wait too long to ask.

KR: Yeah, yeah, well that's a sad story. I'm sorry to hear about Huck.

CO: It's okay.

KR: And yes, our four-legged are our family too. So, shifting gears a little bit, in your second article you also asked, "What if we, as a community, could do more? What would our CME look like?" And I think we've sort of touched on these things a little bit, but, you know, if we could do what we wanted, how could CME do a little bit more? 

CO: Yeah, I think you're right, I think we have addressed that pretty well and could still explore it more. What would it look like if we could do more? I think we would be having less of these conversations about equity and access and inequality, and we would perhaps start seeing more of a focus in the objectives of the grants and the programs we support, rather than one or two presentations here or there, there might be more of a core focus. And I know that we're in the business of medicine and so primarily it's about efficacy, safety, the data and how to incorporate it into treatment and decision-making and things like that, and it's going to be disease-specific, but what would CME look like if we address the the entire patient journey? Not just from diagnosis to to relapse or diagnosis to, unfortunately, passing, but like we just talked about a minute ago, from the minute they're diagnosed, the entire journey and everything that takes on and even a little bit afterwards.

KR: Yeah.

CO: What impact, not just for the patient, but I think for society as a whole?

KR: Yeah, I think a lot of the issues are driven primarily by our healthcare system and the way it's structured, and the way insurance plays a role, and who has insurance and what kind of insurance, like there's so many issues, I think that they are not necessarily things that CME can fix, because that's not our stakeholder audience, they're not the decision-makers, but, you know, one thing, again I think that came out at AIS here, is in the coming years, the role that AI is going to play in alleviating a lot of the burden on our healthcare system, in terms of... maybe there's going to be an AI that can check in on your patients and ask them how they're feeling, maybe there's going to be an AI tool that, this already exists, helps with diagnosis, or patient intake or patient history, or things like that, that can sort of allow practicing clinicians to practice medicine while relying on AI tools to handle more of the administrative burden or help with analyzing all symptoms and coming up with a diagnosis, checking in on patients, or allowing patients to talk to an AI to make them feel better about the loss of a loved one, or things like that. I think as educators, we can educate on these tools as these advances start to happen, we can educate our audiences on how these tools can help them help their patients, so I do think that's one area where we can do more, not just talking about data, not just talking about how data and tools and patient experiences can all come together to improve healthcare for patients, which is ultimately what we're trying to do, right?

CO: Exactly, exactly.

KR: I guess, one final question for you, in both of your articles you conclude with this, "This is my story, my life's mission, but I can't do it alone. Why not join me?" Answer your own rhetorical question here, what role do other healthcare CPD professionals play in this journey, and why should they join you?

CO: You know, I think the simplest answer is, I'm a person of one and no matter how idealist or how much I believe in what we talked about this morning, how much impact, how much change can one person have? And I think, to flip that, part of the reason I started writing these articles and been on this journey, is if I can impact one person, then I've been successful, but, as we've talked about these thoughts and ideas, being a seasoned expert but not the seasoned expert. In our community, in the CME/CPD community, we have so many brilliant thinkers and minds, people who can understand and explain what I've gone through today much, much better than me, so, and like we just shared, some of the issues, the problems are with the healthcare system , it's above CME too in some ways. And so, it's not something that myself, or you and I, if we partner together, or you and I and the Alliance partner together, that we could do. Maybe we're going to do a small drop in the bucket, but really if we tackle cultural competence or empathy or equitable care, or maybe just one of those and not all three, it's going to take our entire community to address it. And I know that in my own role, or experience, again just to have the community reach out and say, "We're thinking of you and thank you for sharing this story.This is how it impacted me," or things of that nature, the world is much smaller than we think.

KR: Yeah, yeah, that's great. Well, I, Cody, will join you in your mission. I think we talked about very important topics here today. I think these traditionally... I don't know how I want to phrase it, I don't want to call it softer topics, but they are, but I think that in the way that our industry is set up, with a focus on knowledge, and competence, and performance, like I think maybe these attitudes and how we perceive patients, these kinds of things I think we're going to have to integrate into our framework of CME somehow, because they are becoming more and more important to patient care, for the way you connect with and understand your patients.

CO: Absolutely.

KR: So I really thank you for joining us here today and I look forward to hearing more from you in future Almanac articles.

CO: Thanks Katie, thanks for having me here, I appreciate it.