Training Doctors in Neurodiversity, with Lauren Clarke, BS, MHA | EDB 275
Stanford University student & researcher Lauren Clarke, BS, MHA discusses why doctors need more education in neurodiversity.
Lauren is a joint MD/MA in Education student at Stanford University working towards improving the quality of medical education related to caring for people with intellectual and developmental disabilities. She also takes pride in supporting and mentoring other medical students who are advocating for a more inclusive model of medical education. Lauren is a graduate of the MHA program at the University of Southern California and completed a LEND Fellowship at Children’s Hospital Los Angeles. She is also presently an Albert Schweitzer Fellow, partnering with medical students to work with self-advocates and their family members to develop, publish, and disseminate an accessible collection of community-based resources that are accommodating of people with intellectual disabilities.
Lauren is passionate about inclusive health and aims to increase the quality of medical care received by people, specifically adults, with intellectual and developmental disabilities through improving medical education and streamlining the process of healthcare delivery.
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DR HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today, we’re so lucky to have coming to us all the way from California, at Stanford, Lauren Clarke, who’s made it her mission, to make inclusivity in healthcare, and all about health care what her life is about. Lauren, thank you very much for joining us.
LAUREN CLARKE (LC): Yeah, thank you for having me. I’m really excited.
HR: Well, you’ve got quite an educational background. Would you like to introduce yourself more properly? And tell us what’s going on? Sure.
LC: Yeah. So um, I’m originally from Southern California, I did under my undergrad at University of Southern California, where I studied public health as my undergrad. And then I got a Master’s in Health Administration. didn’t start out that way. I thought I wanted to be an engineer, actually. So I started off as a biomedical engineering major. And I guess this whole journey sort of started with that not really working out as much as I hoped that it would. I was really excited about engineering. But I found out I was much more of a people person than I gave myself credit for. And I really needed to see sort of how my work impacted people directly. And I just wasn’t getting that as much with engineering. So this whole thing started, when I dropped my engineering major didn’t know what I was going to do with my life. And I read a New York Times article, I think it’s titled An oasis of care for people with with intellectual disabilities. It’s about the league clinic in Louisville, Kentucky. So I read that article, and I sort of had this aha moment of like, this is it, this is what I want to do with my life. I had volunteered with Special Olympics at that point for a few years, but now more than 10 years, and so I had a passion for working with the population through Special Olympics. So when I read the article, you know, I’d figured it out. So I emailed Dr. Matthew Holder, who’s the CEO of the league clinic at the time. And I was like, hey, you know, do you take students, I’d love to come down to Kentucky for a few weeks over the summer, you know, I’d coached Special Olympics, I tried until engineering thing, it didn’t really work out. I’m interested in health care, I’m interested in science. I’m interested in working with these people, or this population. You said, Sure, come on down. And that was the end of it. So freshman year, summer, I had never been to Kentucky before and spent a few weeks at the clinic and they definitely got me hooked. I started my time there not really knowing if I wanted to be a physician, if I wanted to go into medicine, if I wanted to work with this population, I was really just exploring everything at that point. Um, but after, I think really after the first day, but after the first couple of weeks, I knew that I had found you know, what it is that I that I really wanted to do with my life. And they took me under their wing and have really been, like the primary reason for my educational journey, I give them full credit. So I changed my major to public health did some stuff in undergrad and with the MHA. I was actually are the masters of health admin. I was lucky enough to do a lead fellowship at Children’s Hospital Los Angeles when I was still at USC, which is the its leadership education and neurodevelopmental and related disabilities fellowship. So it was a ton of fun, mostly because it was it’s interprofessional.
So there were developmental behavioral pediatrician, dentists, public health workers, special education, students, occupational therapy, physical therapy, speech therapy, nutrition, like sort of all of these disciplines and discipline Chinese together to talk about how we can improve care for this population. And so coming off of that experience is when I started medical school at Stanford, and I definitely came in knowing that I wanted to work with this population. I didn’t know in what way I was still sort of exploring different things. But I got connected with Dr. Lawrence Fung and Dr. Karen Parker, I think both of them who’ve you’ve already interviewed at Stanford for this podcast, but I got working with them that’s working on different projects. And then I was actually in a few different basic science labs thinking that I wanted to do translational research involving this population, but the more I sort of went on in my own education and and talking to people and talking to families, I sort of I felt like I was at this crossroads of wanting to do sort of like this translational research, but then seeing the reality of people just not having access to health care. And our trainees and our physicians not feeling confident really in their ability to to care for this population because of the lack of education that they receive. And there are So many great people doing so much, you know, wonderful translational research. But I had always had an interest in education. I taught special education science during my undergrad to third through fifth grade classes, and they were just amazing. And so I’m like, you know, this could really be my niche as a trainee. And as a physician, you know, because all of this research and all of these great, you know, breakthroughs that we’re making aren’t going to have an impact if our doctors aren’t delivering care. And if you know, people don’t have access to things. And so it was a big jump for me making the shift to now actually getting my master’s in education, and really making this sort of, I guess, you said, my main life’s work my purpose, but it’s been so much fun and so much rewarding. And I love working with students and working with educators. And just feeling like I’m able to have an impact, which is so much fun. Especially so early in my career. I just feel so lucky to really be in the place that I’m in right now.
HR: Well, that’s a great way to feel and then enter one of my heroes, Dr. Rick Rader, and tell us a little bit about your experience with that renaissance man.
LC: Yeah, so I, as I said, I worked at the LI clinic my freshman year, summer, and then I actually went back every year during undergrad. And I had planned to spend a little bit of time there. Between the summer when I started through the summer when I graduated with a master’s in the summer when I started medical school. And so my plan during that summer was to spend a few weeks in Kentucky with the league clinic, and then a few weeks at Orange Grove with Dr. Rick Rader. And it didn’t happen, because that was a summer COVID hit. And so I was home. And you know, it had medical schools really busy, and it’s hard to find time to, you know, have those educational opportunities. So it’s sort of like, okay, that’s unfortunate that that didn’t happen. You know, I’m a med student now. But like, again, as I’ve been going through my training, there’s not really any opportunity for me to gain clinical skills, and like administrative knowledge related to this population. As a medical student at Stanford, you know, we don’t have a specialized clinic, we don’t have experts in this field, treating this population having a full sort of panel load. So I’m starting clinicals next year. And I was like, you know, I really want to make sure that I’m prepared as a student to treat the patients that I want to treat, and also to learn from experts how to treat these patients. So that, you know, as I’m going about trying to create educational programs for the medical students here and medical students across the country, I can sort of pick up on all of these experts, like Dr. Rader, so I had a few free weeks this summer and reached back out to him, you know, said I’d, I’d love to spend some time with you down in Chattanooga. And not only, you know, Shadow, the the physicians and the other, you know, therapists and specialties, but really sort of learn how Orange Grove works and how service delivery in sort of this coordinated manner works. Because I think that’s something, again, that I saw the week clinic and in Tennessee that isn’t really done well, you know, quote in the community. So trying to figure out how we can sort of translate what’s done at these really specialized centers so that people everywhere have access to them. And it was so much fun. I had such a great time in Chattanooga with Dr. Rader, and hopefully I’m able to stop by again soon.
HR: Well, it’s it’s so needed, because as you know, and one thing you’re trying to change is that doctors really get no training in the neurodivergent, population, autism, all kinds of neuro diversities are in the disabled population as well. And they’ve got nowhere to go. And people like Dr. Rader and Dr. Steve Perlman and the others you’ve mentioned, are trying to fill that gap and trying to change the educational landscape. They recently had one of the big meetings, had the head of the AMA shake hands with the head of the American Dental Association, that they would try to get these curriculums going. Now, one of my other heroes is Dr. Lawrence Fung at the Stanford neurodiversity project. And why don’t you tell us a bit about what you’ve done there?
LC: Yeah, so I actually talked with Dr. Fung. Before I even came to Stanford, I was deciding between Stanford and few other medical schools. And I remember sitting on the floor of my hotel room actually visiting another school talking with Dr. Fung on the phone. And so I think he was a big reason why I’m even at Stanford right now. And so when I got to med school, you know, again, I had planned to start in a research lab and doing basic science, but COVID hit and so I sort of had to shift paths and I I’ve always had an interest in education. And so initially, we were talking about developing what’s called a CME course or continuing medical education course for physicians related to autism. And so we got started on that. But then we realized that there wasn’t really any foundational literature out there on, you know, what are doctors taught? What are they not taught? What do they feel like they need to be taught? What do you know, individuals who have intellectual disabilities or have autism or identify as narrow divergent? What do they think doctors should be taught? There’s just not really a lot out there. And so that’s when our shifts are our focus sort of shifted from creating a continuing medical education course to writing the paper that we’ve recently published in autism, that look sort of at all of the training programs related to autism that are available to physicians right now. And then their impact on physician, we looked at knowledge, self efficacy, or confidence and practice behavior. And one of the big things that we really found doing this exercise and writing this paper was that a lot of the training programs right now, focus on knowledge. So are confidence, right? So doctors will take a test before and after the course, saying things like, you know, what are the comorbidities of autism? Or how is autism diagnosed, or how many people have autism, but there’s not a lot of evidence and research done on how that knowledge and confidence translates to actual behavior change in doctors, right. And as an educator, I think, you know, the main point of what it is that we’re trying to do isn’t necessarily to have physicians high have a higher score on a test, right? Because that’s, we take a lot of tests in medical school, we’re good at it. But the end of the day, we’re treating people I’m recruiting patients. And so I think a big lesson from that project, was that we really need to improve the the quality of research on these training programs and focus less on sort of a test at the end of it and more on how does this actually lead physicians to, you know, be more-
HR: We’re going to need the hands on clinical rotations.
LC: Exactly, yeah. But even you know, these training programs are for physicians, so they’re for people out there practicing, and they’re still just taking a test at the end of it, they’re not really looking at. So does this physician screen more for people with, you know, screening more for autism? Or does this physician provide better accommodations, ask for accommodations? Do their patients have, you know, better clinical outcomes? Because of this training? Those questions aren’t really being answered right now. And so we sort of propose that, you know, moving forward, our training program should focus on actual physician behavior change and patient outcomes, rather than just taking a test. So I had such a great time working with him as well.
HR: That’s great. What role do you see society in general? Playing and making these improvements?
LC: That’s a great question. Um, I think in terms of like the medical community, I think one of the things that we commonly see and physicians that I work with, and parents that I talk with commonly see is the sort of thing of people with intellectual disabilities, people with autism, people who identify as neurodivergent, as you know, someone else’s problem, right? So it’s very common in medicine for even an internal medicine doctor to go, oh, well, you know, there’s a, there’s a specialist that will care for this patient, I don’t need to do it. It’s not my job. When in reality is well, first, there is no specialty, right. And that’s that that’s the gap in medical education. But it’s also it’s not other people’s problems. And it’s not a problem in the first place. Right. And so I think sort of shifting this focus from other and sort of exclusion to really just including people in society and having everything be inclusive, and having that mindset will sort of translate really the educational landscape, and probably the societal landscape too. And a lot of the work that that Lawrence Fung does, to just integration into every aspect of society and of, you know, medical education in my case, so showing that it’s not another person’s job, you know, it’s everyone’s job, and we need to make sure that everyone has the knowledge and the training to do that.
HR: Well, that last thing you said is key because we have to get the knowledge in the training because I know in my practice as an orthopedic surgeon, years ago, you know, except for my stint that the Shriners Hospital for Crippled Children in Springfield, Massachusetts, which was great. I didn’t have exposure to disabilities and I certainly will in those days, autism wasn’t even on the scoreboard in general. And I remember when I wrote the book “Aspertools” back in around 2015. That was just, I felt that if I didn’t know anything about Asperger’s and autism, nobody did, you know, in my peer group, but also regular parents, as well as doctors, and so forth. So I think part of the issue is getting the doctor comfortable when a neurodivergent patient with autism or other issues, walks through the door with them not panicking going, well, I don’t have any experience with this, you gotta go to a specialist. And that’s a hard bridge to cross. what you’re tackling and I admire that so much.
LC: Yeah, and again, I always say, you know, I was preface with, it’s not necessarily that people are bad, I don’t think that’s the case. It’s that, you know, as medical students and physicians, we’re scared of, of what we don’t know. And we’re scared of doing the wrong thing and messing up, and we don’t want to do that. And it’s, you know, it’s because we don’t have education. And so I really do believe that if we educate people, then we won’t be afraid. And we won’t be seeing the problems that we have now.
HR: Very well said. If a medical students out there watching, listening or reading this, what can they do to help make things more inclusive?
LC: Yeah, I’m a big proponent of Special Olympics, I always, I’ve a fantastic Special Olympics, Healthy Athletes coordinator that I work with up here in northern California. And I always tell her at least once a month that I don’t think it’d be in medical school. And I don’t think I’d be at Stanford and still be here, if it wasn’t for Special Olympics. And so I’d really encourage students to just reach out to their local, you know, Special Olympics chapter and see how they can get involved how they can volunteer, we’ve had Special Olympics, athletes come and talk to Stanford Medical students, they’ve been in some of our mandatory, you know, courses to, to teach students and to interact with students. And so I think just getting involved in the community, especially with an organization that is sort of, you know, it shows the true potential of individuals would be a really good place to start. And then I think, also just reaching out to, you know, faculty at their school, if they’re interested in doing curriculum advocacy work, a lot of my research right now is actually going to shift to figuring out how medical schools can better support student advocates and the actual process of student curriculum advocacy. But reaching out to people who might be interested in this work, or who might have children or other family members with intellectual disabilities, and just having a faculty champion by your side can really change the whole picture of their advocacy work.
HR: Well, I know for myself, the first time I went to the Special Olympics games out in California, and I was shocked to first of all, see, it’s not just all people with Down syndrome, that autism was the number one thing actually the year I was there, and how the inclusivity was for everybody. It’s an inclusive, it’s inclusive, you know, by nature, and translating that to society in general, as well as the medical schools, as well as the doctors already out. In practice. It’s a trick. It’s it’s it’s tough stuff, but you’re tackling it in every which way you can think of, can you tell us some of the case vignettes that you put together for the AADMD?
LC: Yeah, so I’m on the student resident committee of the AADMD….
HR: Tell what the AADMD stands for, so our audience will know.
LC: Yes, so the AADMD is the American Academy of Developmental Medicine and Dentistry. And again, I got looped in from the folks in Kentucky. And so there are a group of you know, at the higher level doctors and dentists and other actual providers, but also right under them as the medical students and the residents and we have a really great group of medical students and dental students and residents and other trainees who are really passionate about improving health care for people with intellectual disabilities. So I’m currently the medical school education chair of the student resident Committee, which means I am just so lucky to work with an amazing group of students who are advocating for better better and more inclusive medical curriculum at their schools individually. And we try and find ways to come together so the case library was an idea that stemmed from actually a student that came to us from university saying that you know, I’m interested in this population, I proposed a session to my school administrators, they said yes. And now I have no idea what to do. What do I do? How do I write it? How do I focus on this? You know, can you guys help me? And of course, we said, Yes, we develop the case, you know, for them to use at their medical school. And we’ve just sort of kept writing sort of smaller cases that teach content that might, or should be already included in the medical sort of curriculum, things like health care, transition, or establishing care or social determinants of health. And just featuring a an individual with an intellectual disability as a patient in that case. And I think as someone who who does advocacy at my own medical school for improving curriculum, it’s oftentimes easier to alter something that already exists than insert something that doesn’t, right, because that takes extra time. And so with the case library, we’re trying to create an accessible library of resources that medical students can just sort of plug in at their own institutions so that the burden of creating curriculum doesn’t necessarily fall on the student themselves who are doing the advocacy.
HR: Well, boy, you have had some education and talking about the lead clinic on Orange Grove and Matthew holder and Rick Rader, and so many others who were really the leaders in the forefront of what we’re talking about. How can people learn more about your work?
LC: Yeah, I think before that, I would also just like to reiterate that all of those individuals, and so many more, really took me under their wing and are, you know, the sole reason I’m in medical school. So I think that’s a big motivator for my work. It’s like, I want to eventually be able to be that person for other people, and just sort of pay everyone who’s put so much work and mentorship into my career, you know, back back to the community. So I’m on Twitter, @LaurenClarkeMHA. I share some stuff there. I’m on LinkedIn. But yeah, I’m trying to get the word out about you know, just just making curriculum more inclusive, and I am admittedly not the best at self promotion. But those two, those two profiles would probably be best to check out.
HR: What are some of the upcoming things that you are working on?
LC: Yeah, so there’s a lot of stuff in the pipeline, which is really exciting. I guess right now I’m focusing on still ramping up different aspects of the Stanford curriculum for next academic year. So we’re actually in three required sessions of our curriculum. So we have a session on third party interviewing where we’re going to teach students about like shared and supported decision making for people with intellectual disabilities. We teach a broad session on sort of disability and what it means and the medical and the social model of disability. And then we have a course in our second year curriculum, called Transition to clerkships caring for patients with intellectual disabilities. So focusing on that we’re running an elective course at Stanford, on caring for individuals with disabilities. And that’s an entire semester course devoted, just to sort of this topic, which students can elect to take. And then I’m also really lucky to be working on two really fun fellowships this summer and into next year, one of which I’m actually working with a fellow medical students, for Ekman on creating a consolidated list of community resources for people with intellectual disabilities in the Bay Area through the Schweitzer fellowship program. We’ve talked to so many parents about how difficult it is to receive a diagnosis for their child, or we’ve talked to so many adults who feel really lost and not really able to, you know, connect socially with other people or get involved in the community. But at the same time, we know so many people who just are so well connected and have such a wealth of knowledge and and information on community resources. So we’re working with who we call our community advisory board, or individuals with intellectual disabilities and their parents to put together like this consolidated list of community resources that we can share with the medical community and with individuals so that people can you become better connected. And then I’m also working with Special Olympics and parka on something with the valley fellowship program with the Stanford office of community engagement where we’re creating accessible educational resources related to health and Center for Medicaid Services or CMS, medical Medicare eligibility for people with intellectual disabilities that we’re hoping to be able to share pretty well. viably so those projects are are taking up most of my time right now. But it’s again, I’m so lucky to be doing things that are so much fun and are hopefully going to have a big impact.
HR: Well, I’ll tell you what you’re doing great stuff, you’re doing a great thing. And you’re really going to evolve as a big strong leader that so much needed in this arena to join the giants, like Dr. Lawrence Fung, like Dr. Rick Rader, like Dr. Steve Perlman. And so many of the others, we just mentioned, the Matt Holders, this Seth Kellers… What is one thing you wish that all medical students knew?
LC: I wish all medical students just met and had the opportunity to talk to a person who has an intellectual disability or autism or is neurodivergent. We actually just did a study at Stanford. And there’s a large portion of students that said that they had never even talked with a person with an intellectual disability before in their lives. And I think, you know, in medical school, everything is a pathology, everything is something wrong, that we study and we learn how to fix but that’s not the case with with this population, right. And so I just wish every medical student went to, you know, a Special Olympics track knee or had coffee with someone and just sat down and talked with them and begin to see people as people and not as something, you know, scarier or something wrong. And I really hope we’ll get there one day.
HR: That’s great. That’s very well said. And as our friend Dr. Temple Grandin called her book different, not less.
HR: Lauren, I know that you, you’ve had a faculty mentor who’s had a great influence on you. Could you tell us about your faculty mentor? And what’s gone on?
LC: Yeah, so I have so many great mentors at Stanford, luckily. But I actually work primarily now with Dr. Holly Tabor, who is involved with the Center for Biomedical Ethics at Stanford. And actually, I didn’t even meet Holly through Stanford, I met her through Special Olympics, because her husband is on the board. And she has two children, one of whom is a Special Olympics athlete, and both of whom have disabilities. And so we met and we sort of talked about, you know, my interests in my work. And she said, you know, if there’s anything I can ever do to help you, let me know, and I think I’ve, I’ve definitely capitalized a lot on that offer. But she’s just been, she’s such a force of nature, and has been such a guiding light for me as I’ve been going through medical school and figuring out how to always, you know, think about how to make education inclusive. And she’s also had a really big impact on my advocacy work actually being successful, and really just supporting me and, you know, going to administration for me, and presenting our work to, you know, people who are important at Stanford that I might not have had access to if it weren’t for her. And any project, I think, probably once every couple of weeks, I texted, I’m like, “Hey, we should do this, this really cool thing”. And she’s always like “Sure, let’s go”. So having someone like her at Stanford has really shaped my experience as a medical student, but as also showed me the importance of having that faculty partner for medical students who are trying to do this work.
HR: That’s great teaching and mentoring. Greatly underrated.
HR: Lauren Clarke, a true leader in embracing neurodiversity for all of us. Thank you so much for all that you’re doing. You have a brilliant future. You’re in with good themes, and you’re going to do great things to help others. Thank you so much for being here with us at Different Brains.
LC: Yeah, thank you so much for having me.