Self-advocates Perspectives

00:00:00

Lucia Juarez (she/her/ella ): Hi everybody, my name is Lucia Juarez, I use she/her pronouns today i’m here with the UCLA COVID 19 Vaccine Confidence project, the goal of this project is to help promote vaccine confidence in the disability Community. Today we have Zina Jawadi.

 

00:00:19

Zina Jawadi (She/Her): Nice to meet you, thanks so much for having me on and I too use she/her pronouns.

 

00:00:24

Lucia Juarez (She/Her/ella): Thank you Zina. It’s really good to meet you. Zina Jawadi is a medical school student at UCLA. She is an advocate for disability related issues and has been a physician and training during the pandemic. Prior to Medical School, she worked in consulting as a decision analytics associate. Zina has a Bachelor’s degree in biology and Master’s degree in bioengineering from Stanford university. She has experience with nonprofits and initiatives serving people with hearing loss and other disabilities. Zina serves on the board of directors of the hearing loss association of America. Thank you so much for being here with us. 

 

00:01:04

Zina Jawadi (She/Her): Thank you.

 

00:01:04

Lucia Juarez (she/her/ella ): How has your experience and other colleagues’ experience been throughout the COVID-19 pandemic?

 

00:01:11

Zina Jawadi (She/Her): That’s a great question. I started Medical School during the pandemic. Which meant that I was navigating medical school and new environments in the middle of a pandemic, and some people in my class grew up in LA, so they were familiar with the environment, but for many others, including me, that was definitely an interesting experience. We had a hybrid learning model and that meant that certain activities will help virtually and other activities that were considered essential like, clinical skills or anatomy, were held in person. And that meant kind of figuring out and having to adapt to different acoustical environments and different learning environments. It also meant that we didn’t necessarily get the chance to meet many of our classmates in person, but we did the best that we could, and we had creative ways of meeting each other and learning and figuring out our study strategies together.

 

00:02:07

Lucia Juarez (she/her/ella ): Thank you for that. Thank you, yeah I can’t even imagine beginning your medical training in the middle of a pandemic. That is, that is a lot. Are there any initiatives to integrate disability and neurodiversity related issues into medical training, thus far?

 

00:02:24

Zina Jawadi (She/Her): Right now there’s a lot of room for opportunity and for us to integrate disability and chronic illness into our training. I think that a lot of the pandemic reminded us why we are here today, and why we are going into the medical field to be able to help and and serve our communities. And there is a team, right now, at UCLA that’s working to create a curriculum on disability and chronic illness and we’re really excited about it. We’ve been working really hard on it and it’s been spearheaded by the Kuo lab. We are also working on and we have founded a disability and chronic illness student organization that was founded last year, and what we started, formed it last year, and it was officially, it became official this year in February. We hosted a kiss based discussion with Dr. Alice Kuo on disability in medicine and we were really excited by that and our goal is to ultimately expand such conversations and to integrate these actively into our training. Finally, just on a personal note, I actually created a hearing loss 101 guide for my classmates and I intentionally incorporated material that I wanted them to know about hearing loss as future physicians and I have a similar guide for staff and faculty as well.

 

00:03:45

Lucia Juarez (she/her/ella ): Can you tell me a little bit more about the hearing loss guide? It sounds very essential, very much needed, anything that you’d like to share any tips.

 

00:03:54

Zina Jawadi (She/Her): Absolutely I’m happy to do that, so one thing that I felt encouraged, just from hearing from my colleagues and the hearing loss communities, is that there was a need for people to understand hearing loss. Oftentimes perceptions that are conveyed through media, through other just general conversations that hearing loss is either is either hear or you don’t hear, for instance, or it may be that people who have hearing loss only communicate in sign language or there may be an assumption that they don’t use any sign language and they can they speak English, and so there are a lot of different assumptions or really just lack of familiarity with like the disability so that is something that I really wanted to emphasize, and I personally wanted to focus more on the deaf and hard of hearing experience and not the capital D deaf cultural experience, just because that could be its own other guide as well. And I what I did is I intentionally explained what does that experience like and making it applicable to them and making it very practical, as opposed to here’s a theoretical explanation about how it works medically. So I focused on things like being able to a hear in the classroom showing a picture of me and my captioner and what is the what is captioning a lot of people don’t know what that is and just kind of answering a lot of the frequently asked questions that I get growing up. I also tried to address things that I know that my colleagues would like their futures physicians to know, and that was something that was very mindful of is that I want to make it practical and make them feel comfortable with hearing loss as we begin our medical journeys together and as me as their classmate and also give them the opportunity to ask me questions and feel comfortable to do that. So I’m really excited by it was also really happy how wonderful my classmates were in in addressing a lot of the things related to captioning and also just asking me questions. I very much appreciated their engagement. I’m really excited to know that. That they will be that they will be future physicians in that way. I’m very excited to see that these questions are being actively discussed at this stage in our careers.

 

00:06:06

Lucia Juarez (she/her/ella ): It is very, very it sounds very like powerful work and very much needed, especially like you said as they’re moving into their medical careers and becoming doctors that will be serving all communities. How have there been ways, have there been ways to address patients’ concerns during the pandemic?

 

00:06:27

Zina Jawadi (She/Her): So during our first year we focus on the basics and the foundations of medicine, so this is a wide range like physiology, clinical skills, doctoring, history pathology and anatomy and, of course, all of this is really essential for us to understand, in order to be able to care for patients who have COVID or who look going to be vaccinated or people who have long term effects after getting COVID, so all of these are essential skills. We didn’t necessarily have a formal lecture yet on COVID but we just had a lecture on vaccinations and in that lecture we had conversations about COVID, we also addressed things like vaccination hesitancy, vaccine hesitancy. And we also, talked about what that’s going to be like for our next generation. It was a very interesting lecture and I know that this is something that will continue to be an essential part of our conversations. During lecture and outside of lectures as well. Many of my classmates and colleagues also have been actively sharing helpful resources and other important updates related to the pandemic and we have been able to get that information and it’s been wonderful, we also had opportunities as in a volunteer way to be able to be trained on how to vaccinate people in the context of the pandemic that is and also to be able to do it ourselves, and that was a really amazing experience and a humbling experience to be able to incredible experience to be able to do that at this stage in our careers. And finally we’ve just been working on coordinating other ways to give back as volunteers during the pandemic vaccinations, of course, in essential purpose to it. Many other ways that people could be receiving support during this time.

 

00:08:06

Lucia Juarez (she/her/ella ): Definitely. I know you mentioned that you all have a discussion during lecture . I’m wondering what will it look like for future generations, as discussed within that lecture.

 

00:08:17

Zina Jawadi (She/Her): I have a feeling that they are anticipated that they will be lectures related to this. There are different ways that they need to integrate it and one example, could be that they may be discussed in the context of long term effects. It may be discussed in the context of specific other conditions where COVID, COVID is related, and it could also just be its own lectures on its own. I think there will be one other way, that they will be bringing it up and it and it has been brought up in these other ways and just not necessarily as it’s dedicated lecture yet. And that last one is health care disparities so health care disparities, is an extremely important topic of course and people unfortunately who, there are many different communities that were disproportionately, disproportionately affected by COVID, and that is something that. That we have been very mindful of and very aware and trying to figure out how we can address that and not just affected in terms of actually exposure to COVID and getting COVID but also to getting access to the vaccine. So there are many other conversations and that could be its own separate hour long interview or a conversation, but all of these are very important topics and I anticipate that this was just there, this will be a continued conversation in the future.

 

00:09:34

Lucia Juarez (she/her/ella ): Absolutely, I know, right now, you mentioned health care disparities, is a very big topic that will be discussed, or should it is being discussed in in training. Are there any other topics or training that would be helpful for all doctors in training or or experiences that they should seek out?

 

00:09:51

Zina Jawadi (She/Her): I feel all physicians in training should seek training opportunities related to give shots and vaccines and to be able to better understand how we can provide these long term effective care and care for patients who got COVID. Although unfortunately so many people passed away from COVID, there are many people who survived and had really serious long term effects and they are still trying experiencing them and we need to better understand how we can address them and if there’s any way to make them feel more comfortable and long term. I do feel that, in addition to health care disparities, there are other ways we to better understand barriers about practically social distancing and getting vaccinated, vaccines. And finally, I think that one thing that we should be having a lot more conversations around is prevention, I mean a lot of these conversations about how COVID initially spread, are really important, specifically in the context of how can we make sure we are better prepared for something like a public health crisis in the future. For instance, how can we better spot information about use of masks, how can we address, knowing that, especially as a global world, how do we prepare our entire community to do that.

 

00:11:07

Lucia Juarez (she/her/ella ): Absolutely that’s such a great point um, what do you think are some reasons that people with disabilities or their families are hesitant to get the COVID 19 vaccine?

 

00:11:20

Zina Jawadi (She/Her): I think there are multiple reasons, and I should just preface by saying, I am a physician in training and I do not in no way of public health expert but i’ll do my best to give my speculations as to reasons that there are some hesitancies. First, there has been a lot of false information related to vaccines and this has been going on, long before COVID and really been going on for for many, many years. And it has only gotten worse, unfortunately, in terms of what’s being spread so I think that it’s really essential to follow a reliable resources and ask healthcare providers for correct information because there’s been a lot of information that was either conveyed in not a way that wasn’t entirely clear or was just simply not true. Second, the news often tends to focus on adverse effects and deaths from vaccines and, of course, a it’s really, really serious and it’s important for us to know and understand and make sure that we keep our community safe on that front and in terms of adverse effects, but I also think that the way that we convey this information has to be important. It is just as important, because we don’t want to be misleading or saying something like, for instance, it may be… How often right and, of course, adverse effects happen, but what are the pros and cons for getting the vaccine and not getting a vaccine. All of those things have to be considered, and we need to be emphasizing the pros a lot more than we are right now. And third, there have been stories about people getting COVID after the vaccine and of course this is feasible and vaccines are remarkably effective but they’re not 100% effective. That’s just if we’re working on a percentage basis, especially at this mass scale that we are doing right now, some people may just still get COVID and even after they’re getting vaccinated, it’s not 100% effective. It would be wonderful if it is, but we really and we have an incredibly high percentage for that effectiveness and safety, so I do think that it’s remarkable of how far we’ve gone, but it’s also just not it’s just not 100% effective. The idea is that the more people who get the vaccine though the safer our community will be and the ultimate goal is to get herd protection. Not just to protect our community, but especially to protect people who may not be able to get the vaccine for health reasons, and that includes people in our own disability community. And fourth, unfortunately, there is mistrust within the disability community towards the field of medicine, and this is based on historical reasons there’s a lot of context on that and that is a whole long separate conversation, but that is a very valid, very valid, there was a very understandable context behind that. And finally, people just may not trust the safety or effectiveness of the vaccine because of their own disabilities or health conditions that there isn’t a lot of information, yet, about about the effectiveness within certain subpopulations and that is something that we are of course working on, as a community, but there’s still a lot of information that that people tell no and so as a result, they just they don’t really know that whether something works for the general population, they don’t know how it is for their community and to that, I would say, I think the only these are really great points to understand and if you’re in doubt just contact your healthcare provider who can do your research and and also contact, if you know anyone in your community ask them what their experiences are because I would, I would say that the probably others who have had the exact same question so that’s something to consider.

 

00:15:00

Lucia Juarez (she/her/ella ): Absolutely that’s such a great just recommendation for people to ask more questions because you’re right, I think there’s a lot of misinformation, a lot of hesitancy around a vaccine that seems fairly new but has been in the works for a very long time. Although because of the turnover of the vaccine that became out so quickly, there is a lot of mistrust and absolutely bring in into the history, the historical context of the disability community and medical community or medicine it’s also very valid that folks would have hesitancy around getting the COVID 19 vaccine, on the other side, what are some prominent reasons why people are receiving the COVID 19 vaccine?

 

00:15:50

Zina Jawadi (She/Her): People get the vaccine to protect themselves to protect their families to protect their friends and ultimately to protect their communities and and we are showing the data shows that it’s working it’s truly remarkable how much progress we’ve made in the last few months, especially in areas like California, where there were many cases and and really have everywhere you were going there were outbreak so it’s it’s remarkable how far we’ve come in the last few months and that’s a large part of that is definitely related to the vaccine.

 

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00:19:36.090 –> 00:19:42.270

Zina Jawadi (She/Her): They are also getting it is so that because we want to return to our lives, we want to be able to see our friends and and, and we missed people in person, we miss being able and for people with hearing loss we missed being able to hear that masks like it’s very difficult to hear with masks and there’s actual research related to this and it’s we want to be able to be out and not wearing masks and and just enjoy breath the air and have a good time and not worry about getting COVID while doing that. So really just feeling safe and and being able to protect our communities. There are people also who are immunocompromised, immunocompromised and while we’re still learning about the effectiveness of vaccines and populations like people who may be immunocompromised, any protection is better than no protection. And so that there is some there is a confidence that if we do this we are really protecting everyone and not just people who have, who have gotten the vaccine. So it’s a really it’s a community, there was a huge community aspect to getting a vaccine.

 

00:17:26

Lucia Juarez (she/her/ella ): Absolutely. Absolutely, what are some resources that could help people with disabilities, make a decision whether to take the COVID vaccine or not?

 

00:17:36

Zina Jawadi (She/Her): I would definitely recommend doing online research to understand the effectiveness and safety of vaccines. Especially if you have any concerns related to any other health conditions or disabilities or disorders or what not. If you have any concerns definitely do online research because patients are our own, we are our own advocates and it is very important that we do our research because also that helps us gain confidence and what we are doing and take ownership of about our bodies. And the only thing is, I would also say that that is why we do our research, we it’s just as important to check our resources and if something doesn’t seem completely, if you’re not 100% sure, try to find another resource and if you can’t if you are not confident in those resources ask your healthcare provider. I would also really strongly recommend reaching out to support groups and nonprofit organization. So, for instance, i’ve seen a lot of conversations within the hearing loss community about vaccines and COVID and we’ve, I’ve gotten some really great answers that have even addressed questions that I personally had and through the support groups and recognize that these are all very important research resources and communities and they are also trusted communities that understand where we’re coming from. And, of course, most importantly, consult your healthcare provider and make sure that that you feel confident and make sure that you’re that you’re keeping yourself and your community safe.

 

00:19:04

Lucia Juarez (she/her/ella ): Thank you, thank you. Are there any resources that you use or tend to use more frequently?

 

00:19:10

Zina Jawadi (She/Her): I personally love following public health resources, so there are a lot of local resources, state and national resources. I follow the CDC. I read the New York Times, Science and Nature, and I also read the FDA reports. I find that it was if you have any questions the FDA reports have everything that was filled out and it shows. It’s a very comprehensive document. I recognize that it can be a little challenging to read, but it’s important for some people, but it’s really, I I feel that it is these are all excellent ways of getting your information and, of course, support groups as well.

 

00:19:46

Lucia Juarez (she/her/ella ): Thank you so much for sharing all of those wonderful recommendations. We’re now going to shift gears I know you mentioned that you were on the board of the hearing loss association of America. I would like to ask a couple of questions regarding specifically how has this community been impacted by the COVID-19 pandemic?

 

00:20:06

Zina Jawadi (She/Her): Thanks for this question. Just for context, globally there are more than 360 million people with hearing loss and 40% of these people develop their hearing loss before the age of 39. So even with hearing aids it is really difficult to understand speech and conversations and that can be very isolating for context. Hearing aids, in my opinion, a really good for amplifying sound, but at least for me, I still struggle with background noise and that’s that’s challenging. COVID-19 exacerbated communication barriers that people with hearing loss already faced. Social distancing, for instance, requires us for us to be six feet apart. But most hearing aids stop working effectively at that distance and, of course, in. Regardless of using hearing aids or other types of technologies, that’s a very large long distance and that’s hard for people to hear at that point, especially when we have hearing loss. Face masks also diminish the quality and loudness of the sound and that just makes it even more difficult to communicate. If you use clear face masks which are wonderful, that enables lip reading, but it also still diminishes the quality of sound so there’s still that challenge over there. And that all around it’s been, it’s been very difficult to communicate and even if clear face masks, even if clear face masks helped with even quality of the sound, there’s still most people don’t use it, so that’s another challenge. In terms of online platforms like Zoom. Many of them, especially started pandemic did not offer automatic captioning and it is because of the hard work of many advocates, like my colleague, Shari Eberts, for instance for that Zoom and other platforms are now offering automatic captioning, it got a national attention and international attention to get this addressed, and even then it is still not necessarily available for all zoom meetings, and that is a challenge. Receiving the vaccine, in addition to that is also been challenging but so many people so. For instance, some of my friends found that getting the vaccine was a very isolating experience because vaccine sites, vaccination sites are crowded. And the many of the announcements were given aloud. In addition, there was a lot of background sounds, especially when the vaccine vaccination sites for it earlier in the days and so there were hundreds of people getting vaccines in the same day and that just meant that they will really hard, it was really hard to hear. None of these providers or really using clear face masks and they just, it was very difficult to communicate, but with the help of many advocates, there are people working on trying to address this and provide assistive technologies and better prepare vaccination sites to accommodate people. I’ve heard many other different challenges and other disability communities as well, and these are just a few examples, I know that organizations like the Hearing Loss Association of America have been working to address some of these issues so, for instance, a lot of online resources about access issues and addressing these as well as trying to provide better support and one great example of this is the start of this national virtual meetings where people would come together at some point, every week and we just all talk about the various topics, so it’s COVID and other communication access and many other topics and there was a really beautiful experience to see the hearing loss community come together and talk about these things that are, that were really affecting all of our lives, especially last year, when many, we didn’t have the vaccine at that point. And one other thing that happened is that there are now a pandemic surveys and for instance HLA, the Hearing Loss Association of America has these results online and it just confirms that there have been a lot of communication challenges.

 

00:24:04

Lucia Juarez (she/her/ella ): What are some support or assistance that you would like to see this community receive in response to the pandemic?

 

00:24:12

Zina Jawadi (She/Her): First, I would like to see free high quality captions and I think it should be mandated. I think that any platform that has audio should have captions. It doesn’t matter if this video or not. It should just be an automatic, an automatic feature that is provided for everybody, not just people with hearing loss. In addition, I think that people with disabilities need to get better supported and accommodated during this pandemic, including in schools and the workplace. It’s been an incredibly challenging time navigating all sorts of acoustical environments and many and many of these are unfortunately not necessarily addressed just from many conversations with people. I would also just love for clear face masks to become a norm and I recognize that there are challenges like, for instance, the size and shape of the mask, but if we make them universal there will be more, there will be more innovation in that area, and I think that that really should be the future of businesses. I don’t think it should be the clear ones the the ones that are not clear, and then you can’t see anything.

 

00:25:19

Lucia Juarez (she/her/ella ): Absolutely, those are such great recommendations and in terms of equity like you mentioned with Zoom and the platforms that. At first right there was no closed captioning and now I think it may even be a feature that, maybe an additional add on that some people may not be able to have access to or forward so. Those are all really great recommendations that I hope turn into normal realities. That it doesn’t have to be something that people have to pay additional money for. With regards.. 

 

00:25:47

Zina Jawadi (She/Her): Just to clarify, I find that Zoom is offering automatic captions for free but initially that was not the case. Initially, it was only incorporated into the hot, the paid service and then with a lot of advocacy with, with colleagues, like Shari Eberts really, a who really advocated very hard for this, but Zoom’s that announced that they will do it, but it’s still rolling out and for instance some platforms, that the if it’s a large institution they may have it that a person has to manually turn on the captions and only the meeting host can actually turn on the caption so. It won’t be everywhere, it won’t be that anyone who has hearing loss can just have it activated on their own community in their own Zoom and they don’t. It doesn’t matter with others, it has to be like everybody had.The meeting host has to activate it and that’s that’s, the that’s what I was trying to get at.

 

00:26:41

Lucia Juarez (she/her/ella ): Thank you for the clarification. Thank you and yeah that’s, that’s such a great point. see I.didn’t, I wasn’t aware of that, but it’s such a great feature to have for everybody that should be automatically turned on. Are there any other specific supports that should be offered to this community to assist with the COVID 19 vaccine?

 

00:27:01

Zina Jawadi (She/Her): I think that vaccination site should have a contact person for accommodation requests, but, for instance, when you’re making the appointment, there should be information about where to receive accommodations that can even be a question, do you need any accommodations that, that for us to consider. And at the vaccination site There are  plenty of ways to incorporate accommodations and including information so, for instance. Instead of just saying announcements out loud, we could have printed material that points in the direction and I recognize it’s different for each site, but that’s just one example. Another could be that you could assign someone to be guide to walk throughout the process and that person could be wearing a clear face mask. It could also be something where they have a face mask available whenever someone needs, and you can even say, if you need it, if you have hearing loss and you need to clear face masks, let us know. There are many other examples, and these are just these are just theoretical practical examples, but it’s just crucial to make people feel welcome and to make it as easy as possible, because it will, it can be very, it can be very scary to get a shot and it’s important to, for us to make that process as comfortable as possible. And to excite people to go get vaccinated said it’s such an exciting thing to be able to help our communities. And it’s something that we can personally do. Finally, I would also just say that I think that we should have additional studies that should be conducted on vaccines for different populations, and when I say vaccinations I mean COVID-19 vaccines. And that should be including hearing loss. I think that these are all very important areas, and I know that there is some work being done, I would love to see more of that.

 

00:28:42

Lucia Juarez (she/her/ella ): Absolutely, thank you for these recommendations. are there anything, is there anything else I haven’t asked about that you think is important to share with the disability community?

 

00:28:52

Zina Jawadi (She/Her): I highly encourage you to get vaccinated. it’s of course it’s if your recommended by your healthcare provider. They’re protecting your own disability community and it’s it’s honestly a really beautiful experience. I have to say I was smiling the entire day that I got the vaccine, it was a very memorable day. It was really a huge honor and privilege to be able to get the vaccine, because unfortunately there’s still people who are waiting to get vaccinated but we are, we are very lucky and blessed to be able to have access to it right now and I highly encourage you to do that. If you have any kind of concerns or had problems in terms of access related to it, I recommend that you contact your local public health directors of whether it’s state or local, it doesn’t, it’s more just making sure that somebody is aware, and the person who should do it, and can fix this. These are things that we can actively do to make the process more comfortable.

 

00:29:49

Lucia Juarez (she/her/ella ): Awesome. Thank you so much again Dr. Zina for your time. I really appreciate all this wonderful information and sharing space with you today, thank you.

 

00:29:58

Zina Jawadi (She/Her): Thank you for having me.

Zack Williams Interview 6_25 (1)

Wed, 7/7 9:34AM • 32:41

SUMMARY KEYWORDS

people, vaccine, patients, research, vaccine hesitancy, experiences, training, community, symptoms, pandemic, disabilities, providers, anxiety, physician, specifically, sensory, accommodations, sound, folks, real

 

00:04

Laila: Alright, Hello everyone and welcome to our COVID-19 vaccine confidence project UCLA in our interview series today we’re joined by Zachary Williams. Zachary is an MD/PhD candidate at Vanderbilt University in the neuroscience graduate program. Zach graduated from Yale University in 2017, with a degree in psychology with a specialization in neuroscience. Currently, he’s conducting his PhD research where you study sensory processing differences in individuals with neuro-psychiatric disorders. My name is Laila, and I’ll be conducting your interview today. And we’re also joined by our team members, Lucia, Nilpa, and Julie, and just to briefly describe our program. So the goal of this project is to help promote vaccine confidence in the disability community. We are particularly interested in your perspective as a physician, physician scientist in training, and also as someone who works with a neuro-diverse community. And we’re really excited to learn from you. And so with that being said, we’ll just go ahead and jump into our questions. So first, we’d like to know a little bit more about your experience, kind of throughout the covid 19 pandemic when it comes to supporting patients as a physician and training. 

 

1:09

Zack: Yeah, sure, absolutely. So currently, I am going into the fifth year of my MD/PhD, which means that I’ve done about half of my medical training and then in the graduate school portion right now. I still do some clinical work, but I am mostly in the lab doing research on a day to day basis. So I actually haven’t done a lot of in-hospital work since the pandemic started, though most of the plentiful work that I do is in outpatient psychiatry. However, the landscape of outpatient psychiatry has changed a ton since the pandemic, as most of it has shifted to telehealth. And so that was a big growing pain when we started out. But actually, I think a lot of the patients really enjoy virtual psychiatric meetings. And in most cases, you don’t really need to do a physical exam or anything. And it’s much more convenient for people not to have to drive to the office. So on the whole, I think telehealth in psychiatry is here to stay. And, yeah, it’s going to be a way that a lot of different providers now help see their patients. I know I am staying telehealth with my own psychiatrists. And so I’m looking forward to keeping that going as long as I can.

 

02:17

Laila: I know it’s really interesting to see how kind of the sphere and the realm of medicine and you know how patient interactions occur with physicians have changed throughout the covid 19 pandemic. So thank you very much for sharing that experience. I want to kind of shift into discussing neurodiversity, since that’s the main kind of goal of our project and the main community that we’re working with. So could you please just describe, if and if so, in what ways have neuro diversity related kind of issues or problems or solutions have been addressed in your medical training or your scientific training this far? 

 

2:53

Zack: Sure. So in as far as my medical training goes, there’s been relatively little to do with neuro diversity and the standard curriculum. However I was a LENDs trainee at Vanderbilt. So that’s the Leadership Education and Neuro Developmental and related disabilities program and is one affiliated with many major research universities. And so that’s a specific one-year program where people in all disciplines — medicine, many helping professions, the physical/occupational therapy, speech, language pathology, special education, etc. all take this sort of interprofessional seminar where you meet frequently and talk about related issues in the disability community that range from certain more medical issues to policy and sort of macro level things. And so I feel like the LEND program in particular did an excellent job of bringing up the topic of neurodiversity, and how we as providers of all different kinds interact with folks with various disabilities and neuro-minorities. And I think that program, in particular, has done a lot to broaden my idea of how to best serve the folks with disabilities in my own community.

 

04:16

Laila: Okay, thank you very much for sharing that. And, you know, you discussed that your experience was mostly through the LEND program. Could you if you feel comfortable sharing any maybe comments or concerns you have, or just anything you’d like to share in regards to kind of bringing this maybe to the broader medical training community or even just the community as a whole? 

 

4:35

Zack: Sure. I think that in general people in the medical school curriculum have so much pushed on them, that they’re already just trying to understand what they need to in order to pass their exams and get through to the next stage. It’s very difficult to push any additional curriculum items onto medical students, especially in their preclinical years, given how packed those are. And so especially at Vanderbilt, where we take our preclinical curriculum, and we shorten it into one year, there’s a lot that does get cut, I would say. And that’s probably one of those things. Unfortunately, this does leave a lot of medical professionals somewhat unprepared to interact with folks with disabilities, especially like intellectual and developmental disabilities, unless they get extra training and developmental behavioral pediatrics, or some other sort of specialty that really focuses on this community, (such as) child neurology, etc. But I think that your average internist really doesn’t get any training, and that’s it nevertheless, still has to provide sometimes primary or specialty care for disabilities. And so I’ve seen in places like outpatient nephrology, where someone comes in and has autism is, sort of treated in a way that the physician doesn’t really know what they’re doing. And that this could probably be improved in some way, at the very least, by providing slightly more education on the best ways to interact with folks with disabilities, and, some various accommodations that are relatively low effort that can be done to help improve the quality of outpatient visits especially.

 

06:16

Laila: Yeah, definitely. And hopefully, in the future, that is something that, you know, we hope to maybe contribute to and kind of bring light to some of these issues. And there are many activists. So hopefully, we can bring more awareness to this so that physicians can be kind of best prepared in order to work with patients with neurodiversity. And kind of, you’re in an interesting position, being an MD PhD student, so of course, you have your research as a big part of what you do. Can you describe how kind of, you know, your training and from the medical sphere, but also maybe working with kind of the neuro diverse population and how that has impacted your research goals? 

 

6:53

Zack: Sure. So one of the reasons why I wanted to be a physician scientist in the first place was, because while I primarily do research, I think that is only as useful to do research as is that you’re actually going to help real patients with their real problems. And if we’re so disconnected from those patients, that you don’t actually interact with them in any way, shape or form, then you often can miss the point and get stuck in these scientific minutiae that perhaps could be academically interesting, but may not have a big impact on people’s day to day lives. So one thing that I think is really important in my own work is to maintain doing some clinical work specifically with my population of interest, which is autistic adults. And then understanding what those things that the autistic adults truly need, are the things that I hopefully will be able to address in my research. And those things should be able to feed back into each other and such that my research informs my clinical practice, and my clinical practice then feeds back to inform my research, in some sort of virtuous cycle.

 

07:52

Laila: Yeah, no, I think it’s fascinating, especially for the kind of physician scientist side how you’re able to kind of apply some of the, you know, clinical things that you see in the observations you see in the clinic, to your research, and then vice versa. So hopefully, we’ll get some updates there. But um, I just want to kind of go maybe a little bit more broader now. And just to ask how your training has helped you, when it comes to addressing patient concerns, specifically during the pandemic, if you’ve ever had those experiences yet, being a medical student?

 

08:23

Zack: Certainly, I think that it’s probably been relatively limited compared to the folks who actually are there day to day in the hospital. But in outpatient scenarios, nevertheless, we certainly see a lot of patients who have varying degrees of anxiety and stress surrounding the pandemic. And so it’s like high entry especially, you get a lot of folks who are clinically anxious, and then you drop a real threat of death by a virus on them and so then they’re maybe not leaving your house or having major life changes, are some of them get COVID have residual symptoms, and these residual symptoms are amplified and become a, sort of a psychosomatic syndrome and things like that. And so there’s a lot there to unpack and I think a lot of the discussions I’ve had with patients in the last, six to eight months have have been included their reaction to COVID in some way shape or form as since vaccines have become more widely available, I think that it’s much more the case that the people who are actually coming into the clinic and seeing may face to face or mass socially distance scenarios are they tend to all be vaccinated and have a relatively, the sense of more comfort around them, but some of them still do have serious life changes that have occurred since the pandemic they really haven’t been resolved yet. And, and often that is the topic of conversation as well.

 

09:51

Laila: And are there any kind of specific topics you would suggest for research or trainings that someone perhaps in in your position, but a little bit yonger, so maybe a doctor in training or another healthcare professional, like a nurse and training on kind of experiences that they should seek out that would have helped them as they progress into their careers?

 

10:12

Zack: Yeah, I do think that one thing that is somewhat under studied and very interesting to think about are the people who have significant residual symptoms after experiencing an episode of acute COVID-19 pneumonia. And you know, some of these people have relatively mild illnesses, but then have long lasting symptoms afterwards, and we don’t really know to what degree these symptoms are due to lingering effects of the virus versus inflammatory things versus other things. Yeah, but nevertheless, this is a patient population that in some cases can be quite disabled, and genuinely needs a lot of care and close monitoring, as they have many unexplained difficult to interpret yet very real symptoms. And so again, working on understanding that population, how they can be better helped, that would be certainly a good path for someone who’s looking for a way to make a real impact.

 

11:08

Laila: Yeah, thank you for sharing, I’m sure that would be very helpful for perhaps some of the people in our community who may watched this interview. And so up until now, we’ve kind of discussed the neurodiverse community but and the pandemic as well. But there’s also another component of our mission, and that comes to vaccine hesitancy. So I’m curious to kind of hear from your perspective, particularly as a medical student, and a doctor in training, is what type of training have you received? Or have you heard that other physicians have received? When it comes to working with patients or families slash caregivers who are hesitant to take vaccines in general? And if not, are there any training that you would like to see kind of come up to help address this problem? 

 

11:51

Zack: Yeah, I think that on the whole, there isn’t a lot of formal training again, at least in my program. Though, certainly, this is a scenario that you see quite a lot on the wards. And so there was a lot of informal training, as it were, as you perhaps follow your attending around and watched them attempt to convince people to get their vaccines. And this is vaccine hesitancy comes in a lot of different forms. So, for instance, lots of people who are getting their regular outpatient visits are offered flu shots and decline, right? I mean, this is pretty standard, and your flu season, and many, many people will continually offer flu shots at every visit, and perhaps not push the issue too much, but maybe eventually get someone to back down and say, okay like, “why, why are you not taking this flu shot?” What, what is the issue, and if you get it, that deeper reason, oftentimes, you can find a sort of underlying belief that like, may or may not be changeable. But you can usually, at least by having that conversation, have a an understanding of whether it’s probably worthwhile to attempt to convince the person to have a vaccine, certainly, I mean, I think there’s also a place for knowing when to stop. I mean, you have a patient-provider relationship can be quite strained, if the patient is very, very, hesitant to have a vaccine, and you were just trying to sort of shove it down their throat as it were. But yeah, nevertheless, I think that it’s, it’s our job as physicians to work on educating our patients about the risks and benefits of having or not having the vaccines, particularly when it comes to the newer COVID vaccines, given the pretty significant effects that the COVID can have on people of all ages. And so, yeah, I think that on the, in general I certainly have my own informal training in addressing someone with vaccine hesitancy though, I think that it would actually be great to formalize this as part of medical training, especially when it comes to sort of the outpatient scenarios where you would expect to be giving a lot of COVID vaccines. 

 

13:55

Laila: Mm hmm. Yeah. And have you had any of those specific experiences with patients or family members who had vaccine hesitancy, whether that be with the COVID vaccine or, or another type of vaccine? And if you do feel comfortable if you could share those experiences with us? 

 

14:12

Zack: Sure. So I mean, interestingly enough, I have had a couple patients who showed a bit of vaccine hesitancy around vaccinating their children and their children being adults with neurodevelopmental disorders. And oftentimes, this was, at least in my experience, due to some sort of misconception about the risks associated with vaccines, and potentially them being more or being, I guess, talked up in some circles is more harmful than they actually are. And so in the cases where I was actually present and able to talk to the patient, and having that discussion about “so what do you believe these harms are” and then oftentimes, we were able to sort of, I guess, re-educate the patient and say, “no that’s that’s not actually the case. There’s really no evidence that vaccines would cause this or contribute to that. And the data, in fact, show the quite the opposite.” And in some cases has been enough to convince the people to accept the vaccine. Obviously, this is not the case in all scenarios. And I have certainly had experiences where we offered a vaccine, that person was very young, vehemently said, like, “No, absolutely not, please don’t talk about it anymore,” and we’ve dropped it. Because it seems at that point, you really, truly cannot, that they’re not willing to listen, so it’s not helpful to try and push it on them again.

 

15:36

Laila: And when you have these sorts of conversations, are there any kind of resources that you would share, particularly for patients with disabilities in order to kind of make that decision to get the vaccine, particularly COVID-19, or also other vaccines in general?

 

15:54

Zack: So I think that overall, as far as vaccine safety goes, if that is like the primary issue, sometimes I think that actually showing like real data, or a subset of data, that sort of boil down is good. I think that I’m not quite sure where the, like sort of best place to get that for the COVID vaccine is, though, I mean, the CDC website tends to have very good information about vaccine safety in general. And I think in the past, I’ve also been successful with talking about my own experience being vaccinated and my own reactions to vaccines. I mean, so my own as a person who has also received the COVID vaccine. I actually did this quite a while ago, because I was in one of the clinical trials for the COVID vaccine. The Moderna one specifically. I ended up getting a placebo in that trial, though, I didn’t know it until about the time when I got unblinded and had to get the real vaccine. But nevertheless, I was very gung ho about getting this vaccine despite it being sort of experimental, just given that you know, how pressing the need was, and how important it was to show that I’m going to walk the walk, in addition to talking to talk, if I don’t feel confident in myself getting this vaccine, how can I go and tell anyone else that they should be?

 

17:15

Laila: Yeah, yeah, I love that perspective that you had. And I think on behalf of everyone, we can say, thanks for being one of the people that kind of in the beginning, maybe took that risk and joined in those clinical trials, as those were really necessary to get the the process and the vaccine development pipeline going along. So a very, very big help for all of us, for the community, because we’re all affected by COVID-19 at this point, in one way or another. When it comes to the kind of resources and on the discussion of resources, are there any that you tend to use more frequently that you would maybe recommend?

 

17:51

Zack: Hmm, that’s a good question. Um, I think that one if you’re, if you’re a provider and looking for ways to talk to your patients, I do feel like the patient printouts the up to date has are excellent for a lot of different things. I’m not quite sure about vaccine hesitancy specifically. But if you’re trying to get information about diseases or drugs, those are good. As far as sort of just giving patients like education about how to look up information on their own, I do tend to kind of give the spiel about Okay so here are some like good websites. medscape is a reputable source, you can have don’t just like type it into Google and take whenever you find things like that. On the whole, I don’t know that I can necessarily provide any specific resources. At this time, though. I’m happy to look into that a little bit more and get back to you.

 

18:48

Laila: Yeah, no worries. Thank you so much for sharing that. And so we’ve spent some time talking about the more clinical side of the medical side of kind of vaccine hesitancy, and neurodiversity and whatnot. But you are also a scientist, in addition to being a physician, a physician in training, almost physician. So we learned that you do research on sensory systems and autism. So I was wondering if you could just tell us a little bit more about the research that you do? 

 

19:15

Zack: Sure. So what I am doing my dissertation project on is the phenomena and specifically of what I call “decreased sound tolerance.” So a lot of autistic people have issues with environmental sounds either being too loud or too annoying or too distracting for them to really be able to function in the environment with that sound. And know that there are actually sort of different subtypes of this “decrease sound tolerance” based on what exactly about the sound is so aversive? And so in some cases, it’s more of an anxiety disorder, where the sound simply just triggers anxiety. In other cases, the person experiences the sound as exceptionally loud, even if it perhaps isn’t that way to other people or even sometimes causes physical pain. There people have just very strong emotional reactions of like anger or annoyance or disgust, to sounds. And so figuring out these different kinds of “decreased down tight tolerance” phenotypes, and associating them with underlying brain mechanisms is kind of my goal. And then in addition to that, I’m also interested in the more political aspect of that of whether or not symptoms of these different kinds of sound tolerance complaints are associated with different mental health concerns, overall quality of life, characteristics of autism, etc, both across the general population and in autistic people specifically.

 

20:34

Laila: In your research, you do work with autistic adults, I think you mentioned is that correct? 

 

Zak: Yes. 

 

20:40

Laila: So in your experience working with these individuals, what do you believe is kind of the most important takeaway when it comes to developing support for this community.

 

20:51

Zack: So one thing that I found is fairly surprising to me, at least as I yeah, the things that appear to be sensory in origin oftentimes, are influenced by a lot of things that are not sensory. One thing that I’ve noticed is that folks who have a great deal of anxiety tend to have many more sensory complaints or have amplified sensory complaints, compared to folks who don’t, not to say that all sensory complaints are truly just anxiety. But there is certainly an interaction between the two such that anxiety can make people’s sensory sensitivities a lot worse. So one thing that can often be done to improve someone’s tolerance of the environment, or any environment where it might be difficult for them to access something like health care, is to reduce anxiety as much as possible in that time for some extreme measures may even be worthwhile, like a short course over a Saturday or something to get someone in the door and vaccinated or have a blood draw something that is particularly difficult for certain people. But in general, I think there’s a lot that can be done in sort of just the more like letting people have a quiet space in the waiting room, or like waiting their car, or letting people bring their noise cancelling headphones in and then just signaling them in some other way than walking out and calling their name. And just little accommodations like this can certainly make the experiences a lot more pleasant for many people. And I think that more providers need to consider this. And I think it’s also incumbent upon the patient to an extent to let the providers know how they might be able to be served, if the patient can think of a way that an accommodation might be helpful, telling the provider many providers are happy to provide that. They just don’t know that needs it.

 

22:38

Laila: Yeah, no, thank you for sharing those, it’s just really interesting to see how sometimes, you know, accommodations that can make a huge difference can be really small, or something really easy to implement in a clinic. And so you did give some really good kind of points on that are relevant to like, clinical work that physicians and nurses can do. But I was curious, if you could elaborate on any additional accommodations, when it comes to, you know, providing the COVID neck vaccine or, or just even talking about vaccines or other things in general, that may make the patient more kind of comfortable with opening up and having those conversations. 

 

23:16

Zack: Sure. And so this is actually interesting, because it sort of it touches on a project that I’ve been working on that sort of is trying to group different types of combinations that autistic people need in healthcare settings. And what I’ve found, at least in that context, is that there are sort of different groups of people, some people really, really enjoy details, and they think that if they, their best way to get health care, including in vaccines is just to have the person kind of load them up with as much information as possible, use all the medical terminology and jargon and give a really detailed response about what’s going to happen, what this is doing in your body, etc. On the other hand, there are other people who get very overwhelmed with that degree of information, and that just makes them more anxious. And so some people really like it short, simple, in and out, don’t talk too much, just kind of do your thing. And I think it really again, is sort of on both a patient and provider to talk about how best they can be served. And for patients who really don’t have the ability to communicate verbally and think it’s on their support person to kind of understand their needs, or what you know, makes them more likely to have a successful health care visit and talk with providers about how that can be facilitated.

 

24:36

Laila: And specifically, for way described as a support person for someone who’s caring for, you know, a child or a patient with a sensory disability, do you have any kind of particular recommendations or tips on how to best provide that support? 

 

24:50

Zack: Sure, um, I think that really one one thing to know is just to kind of take stock of the you know, the patient’s limits and yeah, there are certain scenarios where a person will become so overwhelmed and yeah, that can like really ruin the whole day, if they get to that point. So if you can kind of see the warning signs and know at what point a person is unlikely to make any more progress and just say, Okay, yeah, here was take a break, we can try this again, I think that avoiding the explosive, awful experiences of you know, someone being extremely overwhelmed and having a meltdown in the office will make the the likelihood of you having successful visits in the future much higher.

 

25:34

Laila: Yeah, and that’s really good advice and I think will be particularly helpful for those watching this interview. So thanks, again for sharing all of that. And I do want to go back, I know we talked a little bit about how, you know, being in your position and MD-PhD program, you wanted to kind of learn from your research and kind of apply what you’re doing in your research to your clinical practice, and also vice versa? Could you please elaborate more on how you kind of plan to do that, or ways you may anticipate that you will do that? 

 

26:04

Zack: Sure. So I think one, one thing that I’m really interested in doing in the long term is understanding what one can do to actually treat you know, sensory sensitivities. There’s a lot that we’ve done a lot of research to show that they exist, they are correlated with this and that, but they yet there’s no real evidence based treatment out there for these kinds of symptoms. And so one thing that I really do hope to do at some point is actually start doing some clinical research to address this specific symptom cluster seeing whether, for instance, like treating anxiety with anti-anxiety medicine actually seems to decrease this symptom in addition to decreasing anxiety or perhaps do people who don’t have anxiety still benefit from anxiety medicines, because they improve their their sensory tolerance. Any of these clinical questions will probably drive a lot of my research in the future. And also in understanding the mechanisms of these sorts of symptoms, and neurobiological level, perhaps you can glean new insights into what treatments may or may not be effective, that could inform clinical investigations down the line.

 

27:13

Laila: And also, from that research perspective, do you have any ideas on some potential research efforts that could be made in regards to vaccine hesitancy within the neurodivergent community? 

 

Zack: Well, I think one thing that is somewhat understudied in this case is specific reasons for vaccine hesitancy and in this community in particular. You know, it’s, it would be interesting for researchers to specifically find folks and ask them, “are you willing or not to get the COVID vaccine and why and then try to classify the reasons into various groups.” And see whether or not that means that some groups of people may be more amenable to changing their mind and others. If you can focus on a certain subset of the population who seems like they’re most likely to with the right information or prodding, like, end up getting their vaccines, then obviously, that’s where you should put your public health efforts. Again there’s very much section of the population that will not get their vaccines, no matter what you do, unless you mandate it, and even then, they will probably figure out a way around it to some people will just have very strong beliefs in that way, and it may not be effective. And so we’re trying to, I guess pull those people out of the pool of people you’re attempting to get to have the vaccine will, yeah, focusing your efforts on the people who may actually change their minds would be my preference.

 

28:47

Laila: And just in a more kind of broad perspective given that you do a lot of work on the sensory systems and on autism research, for maybe kind of others doing doing research as well, and other scientists or healthcare professionals, do you have any recommendations on what types of research efforts should be taken, just in general for supporting the neurodivergent community?

 

29:14

Zack: Um, I think that one thing that is done very little, as far as you know, like how can you research on autism and other neurodevelopmental disabilities is this thing we call community based participatory research. And so you know, this, this gets you instead of as a researcher coming up with your own questions, and just assessing them in that way you try and partner with, like the folks who would stand to benefit from this research and get a group of stakeholders who’s willing to help you out and you know, obviously, like compensate them and all of those things, but then then by having this discussion with stakeholders about you know, what in this area, let’s say if you were looking at to improve health care for autistic adults, you take a group of autistic adults and ask them so you know, what about the healthcare system is causing you problems? Where would you like to see the research go? And you know, by having these stakeholders drive the actual research questions, you can often get much more impactful and valid research. And they can also often help you avoid pitfalls in your methodology that may you may not be asking some questions, right, you may not be assessing exactly what they’re talking about when they give you their perspectives. And so by kind of including stakeholders at every stage of the research process, I think that you truly do have a greater chance of coming up with a project that can can make a real impact.

 

30:42

Laila: Oh, yeah, no, that was a really good. That’s a really good point that you made. I think I have personally never heard of that before. So I think a lot of the time some research can be maybe detached from the community that it’s intended to serve. So hopefully, we’ll be able to kind of continue on, particularly when it comes to clinical research or working with a specific service population, be able to apply some of those points that you made regarding including those stakeholders into the research process. But otherwise, that was my kind of final specific question for you. But before we leave, I would just like to ask if there’s anything that I haven’t asked you yet that you think is important to share with the neurodivergent community? 

 

Zack: Um, well, I think that on the whole, we’ve covered a lot here. But if you know, there’s, there’s anything to talk about with their diversion community and healthcare is if folks out there are having difficulties with the health healthcare system, certainly it’s not a great system at the moment, but learning self advocacy skills and being able to know and verbalize or just tell people, what accommodations are helpful for you, goes a long way. And so you know, if at all, you’re able to implement those in your clinical settings, and if providers are willing to do that, and any providers are because they really do want to help their patients, then you can greatly improve the quality of the healthcare experience for both parties.

 

32:12

Laila: Wonderful, thank you so much. That’s all we have for you today. We really appreciate you taking the time to come out and talk to us, you have a very interesting perspective being in the position that you are. And we really appreciate everything you’ve had to say for us today. And we’ll hopefully be able to spread this interview around. And I think on behalf of all of us, best of luck with your dissertation work and also with your future clinical practice as well. 

 

Zack: Right. Thank you so much for having me.