Explore how AI and advocacy are reshaping healthcare with experts Irma Rastegayeva and Evan Kirstel Discover the future of patient care in this must-listen episode!
Guests:
Irma Rastegayeva, Co-Founder & Chief Digital Storyteller for eViRa Health [@eViRaHealth]
On Twitter | https://twitter.com/IrmaRaste
On LinkedIn | https://www.linkedin.com/in/irmaraste/
On Facebook | https://www.facebook.com/rastegayeva
Evan Kirstel, Chief Digital Evangelist / Cofounder eVira Health and Top B2B Tech Influencer
On Twitter | https://twitter.com/EvanKirstel
On LinkedIn | https://www.linkedin.com/in/evankirstel/
On Facebook | https://www.facebook.com/evan.kirstel
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Host: Tyler Cohen Wood, Host, Health Exposed Podcast
On ITSPmagazine | https://itspmagazine.com/itspmagazine-podcast-radio-hosts/tyler-cohen-wood
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Episode Introduction
Join us for Episode 2 of Health Exposed, where we'll explore how technology is transforming healthcare. Discover how AI and emerging technologies are revolutionizing patient care, including personalized treatments and early disease detection.
We'll also discuss the catalytic impact of COVID-19 on telemedicine, the importance of wearable technology and exciting developments like non-invasive monitoring devices. Get a glimpse into the future of healthcare and don't miss out on this fascinating conversation with Irma Rastegayeva and Evan Kirstel, two of the world's foremost healthcare and technology leaders.
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Resources
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The Power of AI, Patient Advocacy, and Innovation | A Conversation With Irma Rastigaeva and Evan Kirstel | Health Exposed Podcast With Tyler Cohen Wood
Hi, I'm Tyler Cohen Wood and welcome to Health Exposed. Today, I have two of the most influential social media health tech experts in the world. And I'm very excited to talk to them about their personal stories and also what new tech 📍 is coming. such as AI and how it's really going to help patients and the healthcare system in general.
Evan, Irma, why don't you guys just do a quick introduction? Thank you so much, Tyler. It's great to be on. So I'll start. I'm Irma Rastigaeva and for the last 30 plus years, I've been a patient advocate. To a number of people starting with my family and then extended to others. I've, parallel to that, I've had a professional career in hands on software development, technology development, including in the medical devices, medical software sector.
But for the last six or seven years now I've been a co founder and digital chief digital storyteller at Evira Health. And yes, and this is where I bring all my passions, my patient advocacy, my patient experience myself as a cancer survivor, as well as passion and experience with storytelling to help individuals and technology companies in healthcare, health tech, life sciences to bring that important information to to our audience using social media.
That's fantastic., Evan. Yeah, hi everyone, Evan Kerstel. I've been a tech geek for 30 years and after maybe 20 years of pretty boring corporate jobs, the last 10 have been super exciting as a content creator, an industry analyst, and thought leader around different topics in enterprise IT, including health tech and health IT, and yeah, you can find me all day, every day on social media.
That's my Favorite destination for kind of collaboration and content creation and tag teaming with amazing like media journalists and analysts out there. So great to be on the show as always, and we will definitely be putting all that information in the show notes. So Irma, you have your own story as to why you got into patient advocacy.
I think that most people, if they go into that field. They've been a patient themselves, or they've known someone who's been a patient. And, I share that, that same passion. And your story, is very unique. Everyone's story is unique. But it's amazing how you were able to really take your healthcare experience and turn it into this patient advocacy and really helping a lot of people.
And for me, patient advocacy actually started. Advocating for others had started before advocating for myself, and it just so happens that that experience of patient advocacy is very closely tied with my experience as an immigrant. When I first came to this country with my little daughter in tow and my parents and my grandparents, when we all immigrated here from Ukraine more than 30 years ago.
One of the first things that I had to learn how to navigate in this country, in addition to figuring out what supermarket is and how you can get what you need food wise in this huge abandons of products and things. So one of the other first experiences in this country was how to navigate a healthcare system because.
Basically every member of my family needed a lot of medical care soon after we came and without knowing enough English, I actually just started to navigate the system because nobody else could advocate for my grandparents my parents, my daughter. So it was a complete overwhelm in terms of just how to even communicate, but also, like, how things work here.
And I think in the last 30 years I've seen a lot of changes in the whole health care landscape, in the tools available to patients and physicians, as well as in the whole way to obtain information. But I've also seen how many things did not change, so I can, later on, maybe in this conversation, share my experience with what has changed and maybe focus on changes in the last few years and also what had remained the same, both in terms of advantages and Challenges that we face when it comes to all skills is that, I, myself know how difficult it is as a patient as well to really advocate for yourself and you have to learn a lot.
And I have to say, I'm very impressed that you were able to really navigate that speaking a different language because it's very difficult to do in English. It must have been so difficult. back then. So that's amazing. One of the things that as a patient that I'm really excited about is AI.
I know so many people are scared of AI and what it can do, but I really believe that if it's used properly, it can be incredibly successful in helping to find new treatments, especially to some of the rare diseases. And read some read scans even better than than a human. So I'm really excited about this.
And so what changes do you see really coming up? There's been so many since 2020, but what do you think are the top new types of technologies that are really going to help patients and the healthcare system? Yeah, I can take a shot at that here. It's really about data and big data and the amount of data that is now accessible from the patient from providers and the whole ecosystem around us and what you do with that data, how to make care more personalized, more targeted and to leverage this sort of data exhaust from our bodies, from inside and outside that frankly has gone wasted or by the wayside for so many years.
Thank you. The opportunity is to leverage that data that we gather from wearables, maybe our Apple watch or rings or other devices that we might be connected with and to use it to predict outcomes and to predict trends and opportunities that might be invaluable as a patient.
make us healthier and to give us positive feedback or negative feedback, help with early disease detection, preventive healthcare and more accurate diagnoses. So that I think is the big picture, but there are so many more angles to, to AI and healthcare. It's almost like, where do you start? But that's what I'm particularly intrigued by.
I have to say that I am too, because, for people with rare diseases, there's not always a lot of research money that is put into these diseases, but some things have actually changed. COVID really changed everything for healthcare. And there are a lot of patients that have had COVID that now have some of the weird diseases I have, dysautonomia, POTS, small fiber neuropathy, gastroparesis. And, I believe there's a direct correlation to COVID and new cases of some of these diseases. And, there's a lot of really scary things where. People have these diseases now, like someone suddenly has POTS, but they don't really know where to turn to get help.
And they're running into POTS clinics or just dys autonomia clinics that have three year waiting lists. So I'm hoping that there are technologies and there are other ways of really getting these people into the right programs and a lot more quickly than they are today. We're just going to say that this is a perhaps a good segue to for me to reflect on the changes that I've seen that maybe we've all noticed and experienced ourselves in a kind of healthcare landscape in the last three, four years.
Of course, with COVID being a huge catalyst to some of the innovation that we've had to experience in terms of. The downsides that we're all seeing now in the healthcare system, number one must be the shortage of healthcare providers. We know the shortage. Nurses, the huge burnout issue was burnout in the entire healthcare community.
The frontline health workers have been leaving their profession. Unfortunately, these people are so highly skilled and highly trained after so many years investing in. Education and practice and experience and being driven by the passion of helping patients now being driven out of the system due to burnout or moral injury.
It's really a terrible thing. And as you mentioned, people even with regular kind of everyday diseases and conditions have to wait months and months to be seen. So can you imagine for patients with chronic or rare diseases, how difficult it is to see a provider? On the positive side, the changes we've seen that were ushered by COVID or maybe catalyzed by COVID is the rise of telemedicine, the wearable data, the patient access to even their own DA data in labs through portals and being able to maybe do their own research online and have a dialogue with a doctor through a portal which expands the ability to get in contact with your physician as opposed to just maybe placing a phone call and maybe waiting days for them to get back to your portal or, yeah.
Some more of a communication. But what I've noticed that hasn't changed even from 30 years ago to now is how important it is for the patient themselves. And if they're lucky enough for their patient advocate to be their own their own advocate to, to take the health care in their own hands.
Both because of the challenges and how they may have less support from the healthcare system due to lack of availability, but also because they can now be empowered with additional data and research and even using AI to do deeper research on certain conditions and to be able to get some material that's online, whether it's research papers, publications, or even Patient forums, you can learn a lot from patient forums.
So I think it's on one hand It's patient is already suffering. So how can you burden them by saying? Oh, they have to be in charge of their own health care they have to really be the driving force of Get into those new treatments learning. What's the latest as opposed to just relying on the doctor, but on the other hand That could be empowering if only we provide proper support.
If only we can find way ways to advocate for patients on in mass as opposed to just, one-on-one. So Tyler, I just wanna throw it back to you because you've done an amazing job in terms of fighting for your own, finding, yeah. Finding solutions to your own conditions and then and then taking that to.
to wider audience to try to educate and help other people. So it looks like You're actually working on solutions of filling that gap. So maybe tell us more about how you're doing it and how maybe Evan and I and our community could help. Sure. So my mind thinks AI sometimes I, I see patterns and things.
And when I first got sick in 2018, I was sick before that. I just didn't know it. When I went through doctors and some of the worst things where, a doctor would say I don't know what this is and look to my husband and say, has she been under stress lately? And I'm like, no, look, I'm here right here.
And it got to the point where we were looking for a needle in a haystack, and we went to so many different hospital systems, and finally, what I did was I took it a step further, and I started creating these charts, because we were I thought one of the problems was that the doctors that I was seeing, they were looking at one test result in time.
But when you put those, all those test results together, things pop out that may not have popped out before. And I started really learning and researching everything that I could about the suspected diseases that I had. And I even helped diagnose one of my own diseases just because I learned how to really, work with records and, but I was I'm telling you the second I would get a test result, I would start analyzing it and I would start, um.
Trying to figure out what it was because I was able to put all that time and effort into it, but there's, there was no way at the time for a doctor, a physician to spend that much time, but I can do that. And that's where really the beauty of is going to come in. It's going to help really parse through those records to find trends and patterns and, as I got sicker.
And as I got long COVID, I know this is going to sound really crazy, but I am so lucky that I was already so sick because I was already in with one of the best hospital systems, in the country. And now, all of my care is really done it at Johns Hopkins and it's really difficult.
Because I also go into a lot of the Facebook disease groups and I see a lot of new patients suspected with having dysautonomia, arithromelagia, and they're saying there's three year waiting lists to get into these clinics. So what are these people supposed to do now? That's where I think some of the new technology is going to be able to really help.
What do you think, Evan? I know, all the latest and greatest in terms of what's coming down the pipe and what's here. Yeah, I think there's so much there and the community side of social media is so powerful. The groups you mentioned, there's so many more on Twitter and Reddit for community building and knowledge sharing.
But even just, the life of the patient is just getting better believe it or not. I think many of us are frustrated, but think about online appointment scheduling. Going to the doctor doesn't always mean getting your car and going somewhere. I think there's a real push to use IT to make waiting times reduced, to improve like patient satisfaction, to get rid of.
Some of the fax machines and clipboards and paper based processes and really streamline operations. A lot of AI and RPA is not particularly sexy, but it's being used to, optimize hospital workflows and reduce those wait times and make the patient experience better in the doctor's office or the hospital.
And you may have seen some of that. We all have our complaints, but it is. It's going in the right direction. The right velocity is there. And so whether it's, like chat bots that are getting better to help answer basic questions to the portals that Irma mentioned, I think I have too many of them.
There's three or four different portals, but at least you can get your health records. You can schedule appointments. You can communicate with your doctor with text or electronically. And there's a lot of good tech that's being rolled out to empower those patients. And yeah, that's a good, that's a step in the right direction.
Go ahead here, because you've got all this. You just want to, I just wanted to drill down more into what Evan had said just to summarize the patient benefit from some of this technology deployed on the health systems and the physician side, because the goal is, with all those wait times and the shortage of staff, the goal is to Reduce some of the busy work that they have to do, which MRS, introduced this, good, the intentions maybe they had, but to free up, even using UI AI to help read scans to to improve quality and.
Early detection with, working alongside the radiologist, let's say. So I guess what I'm trying to say is what we need to harness is the combination of technologies like AI plus the physician to both. Optimize the workflows or speed up and make more accurate decision detection, but not to replace physicians.
And also maybe some of the appointments could be done quicker on online, or maybe the question could be answered through the portal. And then that particular appointment doesn't have to take space. In the positions calendar and then that could be given to somebody who's been waiting for two months.
Let's say so. And then. And then, we talked about technology. So it's technology doesn't have itself, it can't be empathetic. But, we know studies have actually showed that when AI is used to assist in responding to patients, whether that's, portal responses, then patients find them more empathetic.
Sometimes when the response is without the AI, but I wonder if it's not because physicians are not empathetic. Thank you. They are, but they are under such tremendous stress that it's hard to take two minutes that you have to put together a detailed and, long response to the patient.
But with AI, you can do that in two minutes, you can provide more information and then you can. Maybe make it more personalized. And I guess another point of what Evan was saying is that if we can free up patients from having to drive if they don't have to and they can have the general medicine appointment, maybe they can have a few more minutes to actually do a little bit more of their own research.
To prepare for that appointment instead of just driving and sitting in traffic. So I guess I'm taking, just trying to connect all these threads and it's still back to like patients still have to be their own advocate. Which I know when I got my cancer diagnosis, all of a sudden, all my advocacy skills just disappeared for a while.
It's wait, I can't advocate for myself when I've been advocating for other people for decades? Yeah, so it's hard when you're under extreme stress and you're suffering and you have, health, medical difficulties, but I just, I don't know. That's maybe when we can find strengths in our own supports, whether that's people in our real life or those virtual communities of people that are going through a similar situation, and maybe we can give each other some strength and support each other, not just in knowledge sharing and specific facts that we can learn from, but just knowing that we're not alone.
That's huge. That, that, that's been really huge for me because, for the longest time I just didn't do that, but now I am, in these groups. And, interestingly enough, my very first diagnosis that I got was gastroparesis, which means your stomach doesn't really work.
It doesn't, you're nauseous all the time. It's very difficult to have food move through your system. And that was diagnosed due to what was called a smart pill. And I'm sure Evan, you're familiar with the smart pill and how it works. It's a little pill. It's a. It's a electronic pill that you swallow.
It has a battery life of eight hours and it goes through the entire GI tract. And I can't write it as a camera. Yes. In fact, we've actually had that technology. Can you live stream it on Instagram though? Is that possible through the live? So I took the pill. And they strapped me up with this with this belt that had all these blue wires coming out of it.
And my first thought was, I wonder if I could hack this thing. And my husband at the time said don't do that, Tyler. But the funniest thing about it was the guy said, all right, just go about your normal daily life. Go to the store, go wherever, and I'm sitting here thinking. It looks like I have a bomb strapped to me.
I would call the secure, I would call security if I saw someone walking around with that thing, but it turns out that it never left my stomach. And in the whole eight hours and we could see food in there. You could actually determine exactly what the food was from two days prior. So that's how I inadvertently got the gastroparesis diagnosis, later confirmed by tests specifically for gastroparesis, but, without that.
I don't even know if I would have gotten that diagnosis. Was that done as part of a study? Because I thought this technology was still being experimental, or it's actually in practice. There, there are different iterations of these smart pills. The one I did was in August of 2018, so it probably wasn't as good as some of the stuff that we have now, but we were actually looking for other, for something else, but because it never left that it was an inverted diagnosis later, confirmed by the gastric emptying study test that, I had done.
But without that pill and again, that was a long time ago. Things have significantly changed for the better now. And it's actually makes me think, Evan is incredible at finding information about all the latest technologies. A lot of the times, informational videos.
Where this, seems like a fictional science fiction kind of thing, but in medical, field and what I see a lot of the time is people come in and ask, I want access to this technology. Where can I find it? Where can I get it? If it's something that they can just purchase, like, where can I buy it?
Or who is the doctor that I can go see, get this deployed and we don't have often the times most often we don't have the answers. No, so I don't know how can patients. Find more information about these amazing developments, whether it's research or just early, somebody who's early adopters in their practice.
Do you know? I think it's a lot of it is patients helping patients and shows like this shows yours and Irma show. I really think that's where patients get a lot of their knowledge now. I think there's going to also, there's tools coming down the pipe too, that are even going to help with that, like linking patients to clinical studies.
Oh yeah. A lot of this is, a lot of this is not just, um, pure medical. Information. It's has turned into the gamification of health care in a positive way with digital therapeutics and helping with behavior modification. I've turned, exercise and walking into a bit of a game with the Apple watch and the scoring and the sharing and dumb.
Every condition now there's like an app or a tool they're AR and some are AR and VR, others are apps, others live on your smartphone or your wearable device to manage, diabetes and other conditions, or even gosh, addiction through behavioral changes. There's fasting apps. I could go on and on.
And this, but this requires the patient to take ownership of their own health and health care. And that's a kind of a sea change in behavior as well. That's a really good point. What are some of the more exciting new technologies that you've been seeing? I know Irma does a ton in the digital twin era, and we've had experts on our show around digital twins for cardio and heart health.
Irma, do you want to talk about that a little bit? Yeah. Yeah, so one example that I've written about is there is the living heart project that's got started by one of the executives at the Dussault systems, but he's worked with Boston Children's Hospital to bring digital twin and basically the digital twin of the human heart, the whole model, it's physiological and electrical model of the heart.
Okay. To help plan congenital heart disease surgeries in, in, in kids and what made that particularly powerful is how I, what I've understood through researching this because I thankfully didn't have myself any experience with that particular issue of congenital heart diseases because every congenital heart issue is a unique situation.
So while. Like in adults treating heart disease, like bypass, heart bypass surgery, it's pretty standard procedure now, but addressing and fixing a particular defect in the newborn baby heart effect requires completely different personalized treatment approach and planning and the surgery is very unique, so that really helped.
save a lot of kids lives just through, so patient when, the surgeon, when those to do the surgery, they've already had planned the surgery based on the specific anatomy and the specific modeling of that particular baby's heart. And then digital twins is like one of those foundational enabling technologies that could go from being used in this specific case of a congenital heart disease in a newborn baby to then using this in the pharmaceutical industry to plan vaccine development.
So and anywhere in between and virtual twins have been used in automotive industry in air airline industry for decades now. So it's just bringing that technology into the healthcare space where it can do basically amazing things, but that requires a lot of innovation. And then early adopters are needed like.
Physicians at the Boston Children's Hospital had to work hand in hand with the developers of this technology to basically make it ready to be deployed in real life situations. I think, as physicians and healthcare systems have more and more pressure put on them I worry about, if we're going to have, um, this kind of innovation will continue to move forward.
But I think. I think maybe it's through dedication of physicians and nurses, it will continue because I know people in that profession go above and beyond a lot of them for the patients and the innovators want to continue to make a real difference with their products. So I, having worked in the industry myself, I just, I know how that could drive you.
Anyway I think what was the question? I just, I'm going to know, you, yeah you, you answered it and digital twin technology is very exciting. It really is. And what it can and will be capable of doing in the future, because it's a replica of a person. So I'm excited about it.
Because you can try medications, you can try all kinds of things with it. And so that is very exciting. The whole human on the chip is just so exciting. We're far away from the entire human on the chip, but we now have, kidney on the chip or, different individual organs on the chip where you can try and test even medications and medical devices.
So yeah, there's so many advances to be excited about. It's just when it comes in, like you said, for rare disease patients in particular, it's probably less, there is less money, less resources and probably less innovation just because of, and then it's interesting that in combination, the combination of all the rare diseases the impact and the numbers of people impacted are much more than all the other non rare diseases.
It's just that every individual disease doesn't get all this. All the resources even though the overall population is, much? Yeah. Anyway, so I'm not an expert in rare disease. So I defer to you, but I'm just, it's always just lady less funding, less, less money, less awareness is always translating less.
Innovation is a lot of what that challenge is. Yeah, anyway, so that's really, that's great. Evan what is the latest and greatest technology that you're most excited about? I think personally and professionally, it's in health tech, it's AR and VR. We've had a bit of a long road with with VR and it's, we've had some hits and misses with consumers, but there's no question has huge potential in healthcare, whether it's our friend Raphael Grossman, who's a trauma surgeon who uses AR in the, operating theater.
Wow. Tremendous sort of personal aid and assistant in, in surgery and this is real and he does it. He was the first Google glass surgeon and he's been using all the different platforms and tools or whether it's for medical education, visualization, in med school and in training so many opportunities or with patients for things like PTSD and mental health.
Care, overcoming certain psychosomatic conditions with different VR apps just a wealth of opportunities in that environment. And you're going to see more of it as the devices get better, like the Apple ProVision device and all the, the glass form factor devices get better and smaller and cheaper.
You're just going to see more and more use cases for those. Oh, I'm really excited about that. That's very helpful. Very really is. And patients today, you can take advantage of meditation apps and all kinds of experiential apps for. For different purposes. I'd actually like to flip the script.
I have a question for you, Tyler. Yeah, let's see if I can. So every day we read about more ransomware attacks and hospitals are like the number 1, target of these attacks, 23 and me leaking. 7 million data records first of all, why can't this be mitigated or stopped? And why is healthcare such a juicy target for these people?
It seems like it is the most diabolical scheme ever, stopping patients and providers from working. It's horrific. What's going on? The reason they're targeting hospitals is because hospitals have to pay. That's just all there is to it, unless they have other they have good backups or they can come back online without that information.
But that's typically not the case as we've been seeing. And I think one of the big problems too, is that a lot of these A lot of records everything it's actually online hospital systems have an Internet presence. They have a domain name. I think what we're going to start seeing is a lot of these types of technologies are going to be moving into more of a peer to peer or a closed loop network where.
They're much, much more secure and not on the open internet. And that's something that I'm really excited about. When hospitals started getting hit with ransomware, I got really pissed off because that's just. That's just, come on. So I do believe that, AI in cybersecurity is actually going to start helping with some of these losses too.
So I see the trend continuing until we have the technologies to really thwart this. And I do believe that these technologies are coming and they are maybe even here. I believe it's the next few years. I don't believe this is 10 years in the future. So I'm excited about that aspect to it. I think I'm going to have you guys come back on.
Cause there's so many more things that I want to talk about with you guys. Go on all day. Anytime you call. We'll okay. Awesome. So as a final kind of parting do you have any last last pieces of advice or things you want to say or crystal balling, what you're also excited about in this space?
Yeah, no, I think I'm super excited about. Wearable tech and the opportunities for what's next. We've seen this early innovation, but there's so much more things like the noninvasive glucose monitoring and an Apple locks that might come next year, more applications, more devices that at a lower price point can make your life better.
And just this continual virtuous circle of, AI plus apps, plus devices plus is going to make us live. Yeah, those two. We won't forget about our doctors and nurses, it's going to make us live longer and have a healthier life. Thank you, Irma. As I think about what I'm most excited about is I just take it back to my particular interest to be in the very front of the whole disease continuum.
So that would be disease prevention. And then if we can't prevent. the earliest detection possible. And then, of course, if we can't detect early that, the management, curing and then managing treatment. So being on the very front end of this disease prevention, I'm excited about all the things that we patients can have access to discover our own risk factors for what to specifically focus on, maybe have some personalized data as to like how, what diseases we are at higher risk for and anything we can do to prevent them from actually happening and.
In conjunction with early detection, because some things we cannot prevent with only trying. And then so to detect cancer or any other diseases as early as possible gives us the best chance to reverse when, some diseases can be reversed. Some things could be cured some things could be managed, but the earlier detected, the better.
So any technology in those kind of two areas. I talked about, wearables and just data to enlighten us. But of course, early detection AI is paramount in terms of interpreting imaging of, MRIs and x-rays and mammograms and et cetera. And then of course even in development of.
Medications, using AI to develop medications to then have better chances of curing something as that we detected very early. Yeah, and now I even, I, they're now working on developing medications in space, which could change the whole equation. And then you can do things that you could not possibly do on, on land.
So much to be excited about. And we're definitely having you back on for that. Okay. Sounds great. All right. Thank you so much for having us. Thank you so much. And for all the listeners, I will have their contact information, their social media profiles, and the show notes. Thank you so much. And we'll see you guys next time.
Thank you. Thank you. Bye everyone. Bye.