Apps and Self-Advocacy with Roon’s Dr. Rohan Ramakrishna

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters. And this is the Brain & Life podcast. Hello, everyone. Hope your day is going well. And Daniel, I hope your day is going well also. How are you doing?

Dr. Correa:
The weather changes, I don't know, I feel like I'm adjusting to everything lately.

Dr. Peters:
Yes, the weather is changing. And you and I have chatted about our favorite music, our favorite books, many different favorite foods that we like and dishes. I have a quick question for you. My almost omnipresent cell phone has all these apps on it. My husband does not like apps, but I'm a fan of apps. Do you have any favorite apps that you use?

Dr. Correa:
Well, there's probably too many on my phone, but in New York I ride the subway a lot, so there's certain things I just enjoy doing on Subway. The one that first comes to mind is The New York Times Games app, doing the crossword and Wordle. It's just a fun way of just engaging my brain and having a distraction on my way to work or my way around the city.
Of course, since I'm a runner and I love food, all the time I'm using maps and running apps to find new ways to walk, hike, or run around the city. I love to do and find a route that takes me from one part of the city exploring, whether it's Central Park or another park, and then ending with a little post-activity, meal or snack. Next time you're in New York, we'll do a walk through Central Park and we can head to one of my favorite bagel shops.

Dr. Peters:
I'm ready, totally, because the bagels are much better in New York. Is it truly the water?

Dr. Correa:
I don't know what it is, but I appreciate the art.

Dr. Peters:
I'm glad you appreciate it. Well, I love those games too, and I love The New York Times crossword puzzles, of course doing Wordle. And I like the games you need to occupy your time when you're waiting in line. Also with The New York Times, their recipe application on the phone is great. And-

Dr. Correa:
Oh, I totally forgot about that. Yes. Wonderful.

Dr. Peters:
Yeah. It is awesome. I'm going to give a shout-out to Pete, my next door neighbor. He is the chef of their household and he loves it too, so we... What's great about it is you can share recipes with each other via the app, so big fan. And of course you can order from your favorite restaurants.
But also, apps can just be there to help provide information. And on today's podcast, we're going to talk with Dr. Ramakrishna while he treats patients with brain tumors. He's a neurosurgeon, if you can believe it during the day. In his off time, he actually co-developed a really cool application called Roon.
And what Roon does is it taps into really getting accurate health information for patients that have specific questions. And they've really focused in the areas of glioblastoma, which is a type of brain tumor, but also dementia and ALS. And it highlights videos that have really been curated and have appropriate information that has been curated for your specific questions. And those videos can come from medical experts, some of whom have been on this show, like Dr. Rick Bedlak is on there, and also from some advocates and patients who have also been on this show, including Brooke Eby who has ALS and is an advocate. I'm really excited to talk to him today because really, it's about using that app to answer patient questions. Before we get started on that, we thought it would be great to answer some of our listeners' questions. I think you have the first one, Dr. Correa.

Dr. Correa:
Yeah. I have a question here from Beth J. She says, "First of all, thank you to Brain & Life. It is so informative and positive. My sister has ALS and uses her Alexa and other smart home stuff to help her a lot around the house. It makes me feel a little more secure when I'm not there with her and helps us with sharing information. Do you recommend any other technologies for people like us? We just want to take advantage of everything that is out there and make life easy as possible."

Dr. Peters:
There are several things that you can use. For voice and speech, you can use augmentive alternative communication applications. And there are patients that can use these apps. They're called Voice4u AAC, other ones called CoughDrop or Speak For Yourself. They can be a little pricey, and some are cheaper than other text-to-speech computer systems.

Dr. Correa:
Yeah, some people end up having to buy whole systems to work with, and so these are at least cheaper than that, but they can be more expensive than just a little $1 app that someone might add. That is a consideration. But it could help people who really have a challenge in communication.
If one of your issues is a challenge with hearing or vision, then you might have a tough time seeing subtitles if they're even on a screen when you're at a theater, or sometimes there's things that just don't have subtitles, when you're watching TV, if you don't have that option on the application or the viewing device that you have. There's an app called Subtitles Viewer. You can look up the show you're watching. It also has translation into 20 different languages and can be synchronized with what you're watching on screen. I think that could be very helpful with so many of the things that we enjoy.
But if you're watching something where it's not on TV or something that's a scripted show like that, there's also an app that I found out there called GalaPro that helps individuals with hearing impairments when they go to a stage performance or a Broadway. Some stage performances in shows, it can work by listening in and creates your own subtitles. Of course you want to try to make sure that you're seated in a place where it's not going to disturb a whole lot of other people but can give you accessibility to that experience.

Dr. Peters:
And if we're, again, more vision impairment, another app is Be My Eyes. This is where they use sighted people to really give descriptions of things for people that have challenges with their vision. I think that that's a really cool thing because it's these volunteers that are allowing this application to happen.
And then of course, we all need to get around, so for travel assistance, there are some really great apps for... One's called fuelService, which is free. It actually shows you gas stations that have assistants. There's also Access Now. It's a community-driven app that pinpoints accessible locations on an interactive map. I think that's a great idea because so many of our podcasts have also included patients that are differently abled, and so maybe they would use something like that app to help them get around in a world that is not necessarily friendly to people that are differently abled.

Dr. Correa:
And along with that, if you're vision impaired and you need GPS assistance, there's an app that's free called NotNav GPS Accessibility that actually reads out the directions for you by announcing the directions. I think that's another particularly helpful app. And some of these suggestions I found also taking a look at travel blogs for people who talk about accessibility and travel. We had an episode with Cory Lee, so there is his travel blog called Curb Free with Cory Lee. And also other helpful ones are Have Wheelchair Will Travel and Simply Emma. Those are great places to find tips for getting around our environments that aren't always as accessible.
And then a few things, just to remind you, we're all holding often devices that have lots of assistive and accessibility adaptations. You could just tell Siri to turn on assistive touch and you could look at the options on your own device for more options to help you with accessibility or assistive devices. And check back at some of the websites that you are already using because many more of them are incorporating options to show you about accessibility access in their platforms, which include Yelp and Airbnb. Take a look back and don't assume some of the things you're already using don't give you that extra added information.

Dr. Peters:
So many great tips are out there. Our next question comes from Kelly F. "It is my mom who has been diagnosed with dementia. I moved in with her to take care of her as much as I can, but she lives in the country so I really have no community or just friends to ask questions to. Have you ever covered how to find a sense of belonging when there isn't one easily accessible to you geographically? How would I even start a support group from scratch?"

Dr. Correa:
I think it's sounding to me like we're really looking to help both Kelly F. and her mother get connected with community. And I totally hear your suggestion, and I think that's a great episode first to work on, but let's give you some suggestions now. And one thing to check, even though you are in a more remote area and in the country, take a look at some of the areas that are around you or the cities or towns that you go to for your grocery shopping. If there is a local recreation center, check to see if they have some online programming or events and groups that you can connect with. Of course there's the importance of having a support group for you. You could look through the Alzheimer's Association, the AARP. There are other places that they will have options for support groups for you. But it can be also good just to have community to connect with that aren't directly related to the caregiving or the challenges that you're managing with dementia.

Dr. Peters:
And I think definitely look for some activities that benefit seniors. Some of the things you can look at is look up Meetup. It has different online sites for varieties of different groups. I've actually looked at Meetup, and I found there's pretty much a group for just about anything. If you're interested in reading books about puppy dogs, you'd probably find a book club in a Meetup group. There are also online book clubs that can be a lot of fun and also cooking classes. I'm taking a online cooking class soon with Jamie Oliver. Pretty excited about that.

Dr. Correa:
Cool. That'll be fun.

Dr. Peters:
You never know what you can find. What about the arts? We've done a lot on the arts, Daniel. Do you know anything?

Dr. Correa:
We did an episode actually this last February with the accessibility program for the Lincoln Center. Lincoln Center is an arts institution in New York City and has a lot of online programming. And maybe your local city and state art centers may have live streaming and online events. You can not only get a chance to enjoy those, but maybe that's even a topic to get around a group of friends or family members over Zoom, either even to watch it together and then have time to hang out over a coffee and talk about it. Some sort of activity like that, watching something together or having a discussion point, almost like a book club, but for an online arts event or a Netflix show can be another way to help. And then if you have mobility limitations in getting outdoors, or maybe if your mother does, there's actually online birdwatching through the American Birding Association, or that give you clues and resources on how to even just do birdwatching from your own window. For people who really like being outdoors, it can be a nice way of just at least accessing the world through the windows that we have.

Dr. Peters:
My cats really like it too. They love looking at those. And there's also a really great application called the Bird Buddy where you can actually hook it up and see the birds that are flying around your house just on your cell phone.

Dr. Correa:
And I mentioned before looking at the AARP's website; they have not only online events that you could participate in, but often connections to virtual groups and support groups. But there's other social groups, like the Red Hat Society has online groups. If you like or have wanted to try out public speaking or even just like listening to storytelling, the Toastmasters is an organization that has online activities. Or if it's just other online forums and connections with people, there's two websites that people go on just to make connections with others called Seniors Only and Senior Forums. We'll have some of these links in the show notes to help you find some resources that can help you make connections and find more belonging and activity in your own communities and online.

Dr. Peters:
And Kelly F., you really set this up perfectly because coming soon we're going to have a podcast with filmmaker Kitty Norton. And she really taps into exactly what you're saying today in your question. She talks with us about a film called Wine Women and Dementia that she made. She's a filmmaker. And it's really her experiences with her mother who had dementia, but really about other dementia caregivers. And she has a blog called The Stumped Town Dementia Blog, and I think you should check it out. But stay tuned because I think you'll learn a lot from our podcast.

Dr. Correa:
Yeah. I hope you and then everybody else subscribes so they don't miss that upcoming podcast. Now we have another question. I think this is our last one before we go on with today's episode. Is from Jackson N. And he writes, "I have GBM and I find your podcast so helpful. I love the episode with Drake White. Is there a podcast or group that I might be able to reach out to for more?"

Dr. Peters:
Jackson N., thank you for sharing that with us. I hope you're doing okay. I actually do know some nice podcasts. Actually my own patients, because neuro-oncologist, I've been involved. But one that I like is... The names are sort of fun. The first one is The Stupid Cancer Show podcast. And I believe it's hosted by a medulloblastoma survivor, which is another type of brain tumor. There's also a podcast called Guys With Cancer. It's hosted by two individuals that have a cancer diagnosis; and one of them does have a brain tumor also. And so they have a lot of people on those podcasts that have brain tumors, maybe glioblastoma, and they're really trying to build communities. Another one that's more foundational is called A Brain Tumor in Me, which is sponsored by the International Brain Tumor Association. And then I'm a big fan also of Resilient People podcast. This is coming more from a caregiver perspective. But it does talk about resilience including living with glioblastoma. And we featured that on one of our podcasts with the host Janet Fanaki.

Dr. Correa:
And I want to make sure Jackson and everybody listening knows that you can go to the Brain & Life website, the magazines and podcasts website has a link up at the top called Disorders. And so under that, you can sort all the content through Brain & Life, including podcasts and magazine and online articles by a medical condition. If you wanted just to see there the variety of content around brain tumor, epilepsy, some other condition or a general topic like healthy living, you might be able to see a variety of our content.
And specifically if you looked for some brain tumor or brain mass related episodes, we've had past episodes you can check out with actor Craig Russell, figure skating legend, Scott Hamilton, a lawyer, Victoria Vesk, a caregiving related episode with Tabaka Coffee and also connections with advocacy organizations promoting research in an episode dedicated that, and as you mentioned, our episode with Drake White, so a whole variety. We've had magazine features related to brain tumors with Maria Menounos, Jim Gaffigan and Morgan Sobel, so a lot of variety of content around each different medical condition.

Dr. Peters:
And we've also featured on the podcast the CEO of the National Brain Tumor Society. They have a lot of resources. Also, the American Brain Tumor Association, also known as the ABTA, also has a lot of advocacy groups. I would encourage you to reach out and check out those websites. And of course, for our podcast today, you should check out the Roon app. There is a lot of rich information for your questions on glioblastoma. Let's hear about this app and see how it can really be a resource not just for patients with glioblastoma, but for many other neurologic conditions.

Dr. Correa:
In the show notes, you will find the link for our listener survey. We've mentioned it a few times, but please visit brainandlife.org/survey. You can participate in our listener survey. And you get a chance to enter a drawing for one of five $100 Amazon gift cards.

Dr. Peters:
Hello, listeners. Thank you for joining us today. I hope you're having a wonderful day. I'm your podcast co-host, Dr. Katie Peters. And I'm delighted to introduce Dr. Rohan Ramakrishna. Dr. Ramakrishna is a fellowship trained neurosurgeon, so we're hearing from another neurosurgeon again. He specializes in treating patients with brain tumors and other central nervous system tumors. He is a professor of neurosurgery at the Weill Cornell Medical College in New York. While he has this day job as a neurosurgeon treating patients with brain tumors, he also co-founded an application called Roon. And I'm really excited about this application. It actually taps into accurate health information, particularly in the areas of brain tumors. He looks mainly at glioblastoma, but also in the condition ALS, which we've talked about on this podcast. Today he'll be mainly discussing this application and how it works for patients and caregivers. Welcome to the Brain & Life podcast.

Dr. Ramakrishna:
Thank you, Katie, really appreciate it. And thank you for the opportunity to speak with you and your listeners.

Dr. Peters:
Absolutely. Before we get started on the specifics of your unique application, Roon, can you tell us a little bit more about yourself and where you're joining us from today?

Dr. Ramakrishna:
As you mentioned, my professional medical life is centered around neurosurgery and specifically a discipline called neurosurgical oncology. I'm calling from New York City where I'm based. And my life's academic and clinical passion is helping people who are navigating brain tumors. And I've had the real privilege of training and being exposed to some great institutions along the way, including the University of Washington in Seattle, for my Pacific Northwest fans who are listening, or MD Anderson in Houston, Texas before I came over to New York City.

Dr. Peters:
Well, great. Now, you are a neurosurgeon who specializes in treating patients with brain tumors. Can you tell us a little bit more about the nuances of your practice and the patients that you see?

Dr. Ramakrishna:
Sure. I see a variety of patients with brain tumors spanning the benign. You think of things like meningiomas, pituitary adenomas, craniopharyngiomas to unfortunately the malignant, which are things like glioblastoma and other types of malignant brain tumors.
And the good news is our surgical techniques, if you look at the history of neurosurgery, have gotten safer and more effective. Back when neurosurgery was invented, really, it's not even 100 years old... Or maybe a little over 100 years old. It was a very, very dangerous thing to have neurosurgery. The mortality was gigantic. And now the mortality from a neurosurgery operation is well under 1%, and so I think it's extremely safe procedure in experienced hands. It's a discipline where we could make incredible impact on patients' lives both for quality and quantity of life. And so I'm really drawn to it for the impact it can have on my patients.
I'd say the other reason I really enjoy this field is in medical school, it was just very obvious to me that there's just so much unknown yet about the brain. There's lots of things that we still have only superficial understanding of. But when it comes to the brain, it is literally, as far as we know, the most complicated structure in the known universe. In terms of organization and complexity, nothing else comes close. And so the idea that I, as a neurosurgeon, could be, for lack of a better word, tinkering in someone's brain and make them better even was truly fascinating. And really, no other specialty for me came close when it came time to choose how to proceed in my medical school career. That aspect of it, the complexity of the brain, the fascination of figuring out the unknown parts of neuroanatomy and neurophysiology, the unknown parts of cancer.
If you've read Siddhartha Mukherjee's book, The Emperor of All Maladies, it's as fascinating dissertation on cancer. And as much as we know today, there's still so much more to be discovered to help our patients. And so cancer and oncology is such a multidisciplinary sport. We're very fortunate to work with amazing colleagues in oncology and radiation oncology and then basic science really all working together to create new impactful therapies for our patients. It's amazingly professionally satisfying and really privileged to be able to do it every day.

Dr. Peters:
Well, thank you so much for sharing that. And again, I'm a neuro-oncologist, so we so enjoy working with our amazing neurosurgery colleagues like yourself to treat our patients with brain tumors and to really give them an opportunity to have the best quality of life they can have after having that diagnosis, whether it's a benign tumor or a malignant tumor. And really, the first step is to get the tumor tissue and to get it out and to understand it. And so it's so wonderful that we have specialized neurosurgeons like yourself that are seeing those patients and caring for them, so just thank you very much.

Dr. Ramakrishna:
Oh, my pleasure. Thank you to you as well. It's a mutual appreciation society today.

Dr. Peters:
Yes, we all work together as a team, and I think our patients definitely know that and benefit from that. Now, we're really here... Even though we love hearing about your job as a neurosurgeon, what's great is that you've created this really neat application called Roon. And I just would love to know more about it, share it with our listeners. What inspired you to create this app, and tell us more about it.

Dr. Ramakrishna:
Sure, absolutely. Roon, R-O-O-N, you can find it at roon.com. And I'll take you through the little bit of the history of Roon and how we developed it. One of the problems that we have today is that patients, caregivers, they have limited time with their doctors. Despite our best intentions, we only have 20, 30 minutes with our patients. And when you're diagnosed with whatever the condition is, whether it's cancer or anything else, that 20 or 30 minutes never feels sufficient given the gravity of the thing that you're facing. And so what do people do when they have limited time with doctors? Which is a perpetual problem. They go online.
And for anyone that's used Dr. Google or gone into a subreddit on a health condition or a Facebook group or a Facebook health community or Instagram or TikTok to find health-related answers, it can cause a lot of anxiety, a lot of fear. And you're exposed to a lot of misinformation and even disinformation when you go into those platforms, and that's because in many of those community platforms anyway, there's no expert in the room that's helping to guide the conversation. And it's not that those communities start from a bad place; people are there trying to help each other. But on the other hand, if you don't have an expert in the room, that misinformation and even disinformation can happen. You can find scammers. If you talk to some of these Facebook group moderators, they'll always tell you that there's a lot of scammers that come into the group and try and sell snake oil to the patients. There are people with bad intentions who try and tell people to take dog de-wormer for glioblastoma or for ALS or for dementia. There are people in there that'll say marijuana cures everything and things that don't help the patient journey.
And it's understandable, people are looking for answers, but they're not getting, in my view, answers that we can be proud of as a medical profession. Because of that, we, as physicians, are embarrassed about the internet. Do we ever send patients to Dr. Google? No. Do we ever send patients to WebMD? No. And so I think we're afraid of what our patients are going to find. We may send patients to some nonprofit sites, which can be great, but of course they're not content creation or medical answer platforms. They're doing their best to provide good information, but it's not being driven by every great expert in the field. That's not their mandate. And so we don't send people anywhere. And because of that vacuum, patients end up in these other places like Dr. Google, et cetera.
What we wanted to do and what we're on a mission to do is give everyone a trusted guide for health, and that is by taking world experts across the country and having them answer all the questions that patients and caregivers have for the questions that they have. And we can go really deep. In the conditions we cover today, we have glioblastoma, ALS, dementia, and then fertility and family building. And our goal is to do this for all of health, but this is where we started. The content is incredibly deep. For example, in the glioblastoma space, you'll find content all the way from what is the purpose of temozolomide in glioblastoma therapy? All the way to what is the experience of chemotherapy like by a patient? How do I have hard conversations with my family by a mental health specialist? All those things. It's a very holistic ecosystem of answers for all the questions that come up.
We package all those answers into guides. There's a guide specifically for caregivers, there's a guide on recurrence, there's a guide on palliative care and end-of-life issues. What we looking to create is something that's genuine, that's authentic, and that's trustworthy and empathic. And so I think in doing that, we really hit a real powerful need that people have.
The other feature we had that we're really proud about that we launched earlier this year is a feature called Ask a Question. And so you can come into our app and ask any question regardless of how you type it, educational level; it doesn't matter. You don't need to know the vocabulary. That's so much of the problem, right? As a patient.

Dr. Peters:
Absolutely.

Dr. Ramakrishna:
And even as a doctor, if you're dealing with something else unrelated to your field, you don't have the vocabulary either, and so you just type in things like my head hurts. Whatever it is that is on your mind, you can type it in, and using AI, will figure out... And this is where AI shines, by assessing language. Will understand what you mean and then map that to the answers that we have on the platform. Now, the beauty of that is we don't source the whole internet where there's lots of misinformation, outdated information, et cetera. We only source from our corpus of content of experts. And so when you get an instant answer, you'll see the expert that said it.
And in addition, we provide some what we call multi-perspective answers, which means that we'll have multiple people answering the same question. What is the value of the ketogenic diet in cancer, in epilepsy, in... Name the condition. And experts can fall on different sides of that question. It's valuable, it's not valuable. We think it's important to show, in as evidence-based way as possible, why leading experts may disagree on a particular topic. Because if you don't show the gray areas, people then are not going to find it useful; they'll end up on TikTok or whatever and get potentially misinformed that way. That's the platform. It's basically a guide for anyone along their health journey, both patient and caregiver. And we're really proud of it.

Dr. Peters:
And congratulations. I will tell you that the first time I learned about this was from a patient; they told me me about it. And then I heard it again from one of our podcast guests that had ALS that was involved in Roon. It's nice that you've got a lot of great word of mouth because my patients know about it and so do our guests.

Dr. Ramakrishna:
I love that.

Dr. Peters:
This is why we're interviewing you today. Can you tell us a little bit more about the name and the inspiration for the name?

Dr. Ramakrishna:
Oh, I love this question. It's a multi-layered onion. We wanted something that was short and easy to pronounce. We wanted something that we could imbue with meaning as the service grew and took on more health conditions. And we wanted something that was a beacon of hope. And so Roon backwards is noor, which is light in darkness in Arabic, because we want this to be an online sanctuary.
And then there's some inside jokes a little bit. Not jokes, but the inside baseball on the name also is my co-founder, Vikram, his dad was named Aroon; and he died of ALS. The patient is the center of everything we do at Roon, and so the name is sort of a appreciation of him and his role in Vikram's life. My other co-founder, who's our chief technology officer, is named Aroon. And then basically that's that. And then of course my, Rohan, the R-O is in there as well. These are all little inside things about the onion. But basically it's meant to be an online sanctuary for people navigating hard health conditions.

Dr. Peters:
Well, it's great because almost like all the founders have a part of it. And that's what you want to do. You're building that community of both experts and also patients. Now, how do you get those experts and also those patients to bring content to you? What is that process like?

Dr. Ramakrishna:
Well, we source the questions for the app from multiple ways. When a new expert comes into the app, oftentimes they have particular interests that they want to talk about. Some people, for example, are incredibly interested in certain aspects of palliative care. There's a Dr. Johns Hopkins who's, this is her life's mission. Her name is Dr. Mehta, and she's terrific. And she did some amazing work with us on the app. And she has amazing work on palliative care and end of life type of content. Sunitha Puri is also a palliative care specialist, interestingly. And she's also a notable writer, author. And she speaks movingly about how to emotionally grapple with these hard questions that you only have to think about or only want to think about when you're diagnosed with a life-changing type of health condition. And so a lot of it comes from our experts in terms of what they're interested in.
And then we're a team steeped in medicine. In addition to me, we have a few other doctors on the team, including Josh Lang, who's a Harvard trained cardiologist. And we study each condition. We try and figure out the map of that condition. One of the analogies that patients often tell us is that when you're diagnosed with a new condition, it's like falling off a cliff and having to learn Latin at the same time. And so what we try and do is create the map of every condition and tell you what are the different inflection points that come up? And those turn into our guides that you see on the app. And so within those guides, we can quickly create questions that are most relevant to patients. We find these questions online in terms of what people are asking, and then just from our own medical sort of backgrounds. Between our own experts and our own internal research, that's how we find the questions we put in the app.

Dr. Peters:
And how did you decide to highlight really glioblastoma, ALS, and dementia? I guess it makes sense; you're a neurosurgeon, you treat patients with brain tumors. But was there a particular reason why you chose those first?

Dr. Ramakrishna:
We didn't want to build anything that we wouldn't use ourselves. I think that's always a interesting way of thinking about creating something new. And so for glioblastoma, that's my clinical passion, to help patients with that disease, and so we started there. ALS affected my other co-founder and dementia affected my other co-founder. His parents were dealing with this condition. And so we started there and then we moved into bigger conditions. Like I said, our goals through this for all of health. But our first bigger condition, so to speak, was fertility and family building, which we just recently launched. And that, given all that's happening in society today when it comes to access to reproductive health and et cetera, we felt particularly impassioned to create this ecosystem for women's health and reproductive health.

Dr. Peters:
And oncofertility is so important for our patients for those issues when they do get diagnosed with a brain tumor, whether you're both, if you're a woman or a man, asking those questions and being upfront with them about what the concerns are, I think it's highly important. Now, you mentioned this is just the start for Roon, correct? Look, this is just the start.

Dr. Ramakrishna:
Correct.

Dr. Peters:
Tell me about the future. What's going to happen next?

Dr. Ramakrishna:
Oh, I love that question. And by the way, we do have a whole oncofertility section on Roon in our fertility app. People should definitely check it out if they have questions in that space.
The future of Roon is to really do this for all of medicine and all of health. And so I think that doctors understand the need to be out in the public space and educate. I think if you see a doctor and ask them what lights them up, what makes them happy, it's that face-to-face interaction that we have with the patient. All the other things that we have to do in healthcare and medicine nowadays, we would do without, like the compliance training and making sure you document this thing so that you get the appropriate reimbursement. All of that I think doctors for the most part don't enjoy. But if you ask doctors why they really enjoy medicine, it's just sitting in front of a patient and of course helping them and educating them and their families and learning about them. I think some of the unexpected joys of neurosurgery, even though I love operating, is just learning about my patients and their lives. And I always learn about their kids and their families, and you develop this lifelong relationship with people as you learn more about them.
Similarly I think with Roon, we're emulating that. We're basically, what are the questions your patients have? And then we allow you to answer them. And so getting doctor experts on the platform talking about the big questions that their patient communities have allows them to really scale their access. There's people in other parts of the country that will never have access to a Dr. Katie Peters just because of time, money, location, distance, et cetera. And then you globalize that. There's people in Bangladesh who will never have access to you. And so how do we get expert advice, answers to people that really, really need it? And so this is really a way of scaling that expertise that patients and caregivers so desperately want and to give them an answer to their question anytime they want. We have some fascinating anecdotes if you have a minute. I had a patient... or a caregiver taking care of someone with glioblastoma who said that they had Roon on their phone and they were in the emergency room, and she knew everything that was going to happen just by asking the questions on Roon.

Dr. Peters:
That's so cool. I love that.

Dr. Ramakrishna:
She was able to help inform her ED physician who obviously not a... No ED physician is a glioblastoma expert. Her dad was on Avastin. And so what are the complications that can happen with Avastin? She knew all those things, could prep them in terms of what to look for was a much more productive, efficient ED visit. And so if you think of the importance of advocating for yourself as the patient or caregiver when you're in a hospital setting, especially if you're in a place that's not seeing a lot of glioblastoma patients or ALS patients or dementia patients, what are the questions you should be asking? And so those are the kinds of things we help people with.
And then similarly, we had another story of a patient in India who wrote this glowing... I don't want to call it a review, but basically that of a ALS answer. There's more neurologists in Massachusetts than all of India, think of that statistic, and so for them to be able to see an ALS expert and get that level of information is impossible in that part of the world. But here we gave them a roadmap of what to do and what questions to ask.
And it's not just what therapies do I need? It's all the practical stuff. Like with ALS, when you're talking about breathing and you're talking about the questions about when to consider a tracheostomy or the type of wheelchair you might be thinking about, all of those kinds of answers are on there. And then practical tips like for people with advanced dementia, sometimes it can be difficult to get them to brush their teeth. How do you get my loved one to brush their teeth? is a fascinating question that people ask on the app. And it turns out that no doctor has the answer to that question because that's not a question that they have a lot of expertise in dealing with. But caregivers who've been through it who are on the app have lots of suggestions of how to get people to brush their teeth. It's a really fascinating ecosystem of both doctors and people with lived experience who are providing both medical expertise but also practical expertise on how you navigate a health condition. Basically, to answer your question, the future of Roon is doing that for all of human health.

Dr. Peters:
Well, of course, that's just so wonderful and so cool. I love that all those anecdotes from the ER. And so many times in clinic, I'll learn things from my patients. Just like I learned from my patients about your application to begin with, I'll learn things from our patients and our caregivers that I was like, "Oh, that is such a great idea." And I can later on share those tips and tricks with other patients that maybe have something similar or that I think that they're in that vein. It's nice that what Roon is doing is it's really giving an easy, accessible way to tap into all that useful information if you don't have an opportunity to be in front of your providers or your physician or from somebody else that knows that experience. Now, you mentioned you have caregivers that are using the app. I assume you also have patients. What is your typical audience or providers looking at Roon also? You mentioned your physicians.

Dr. Ramakrishna:
It's a great question. The app was primarily designed for patients and caregivers, but interestingly, more than 10% of our users are providers of some sort. And it makes sense. Like for glioblastoma, most of the doctors that are treating glioblastoma oncology-wise... Or not most, but many are not necessarily at big, academic medical centers. They're medical oncologists that are seeing a variety of cancers. And so this is really helping them. In the dementia space, how many dementia specialists do you know? It's a tiny number of people that do that. And so in the dementia part of the app, most of the providers are primary care doctors, geriatricians that are interested in learning from experts about all these professional and practical tips on dementia and the various types of dementia and brain health. We have a whole brain health section for people that are interested in optimizing brain health that's based on some of the work done at Harvard and the brain health group there. It's a really amazing ecosystem where professionals are finding a lot of value in addition to patients.

Dr. Peters:
Absolutely. Dr. Ramakrishna, how do people get this app? Where do they go?

Dr. Ramakrishna:
If you want to get the app, you can get it for free at www.roon.com, R-O-O-N. And you can go to the iOS App Store and download it there as well.

Dr. Peters:
Okay, great. And it's available worldwide, correct? If you have a smart gadget or a computer, can you get it?

Dr. Ramakrishna:
Correct. If you have an Android phone, you can still use it using the web browser at roon.com. But available anywhere in the world.

Dr. Peters:
That's great. Well, I want to just thank you so much for talking with me today and for developing this app. I see it just growing. Everybody needs to check out Roon. I know that our listeners that can use their smartphone or use their computers, they can download that free application and learn from experts and patients and their care partners. And I just want to thank you again, Dr. Ramakrishna. This was a lot of fun to talk with you. And I hope that you come back as you develop more of your app.

Dr. Ramakrishna:
I appreciate it. Thank you so much for inviting me. Thank you for the great work you're doing with the AAN and the Brain & Life podcast. And again, it was a real honor to be invited to speak with you.

Dr. Correa:
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Dr. Correa:
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Apps and Self-Advocacy with Roon’s Dr. Rohan Ramakrishna

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