[00:00:48] Monica (Recorded): Hi, and welcome to Technically Sick. This podcast explores how technology can increase access to education, employment, transportation and improve socialization for the disabled and chronic illness communities.  

[00:01:03] I’m your host, Monica Michelle. 

[00:01:08] [Music Ends] 

[00:01:08] Today, I’m going to be speaking with Caitlin Schumann, a product manager for Firefly Health, a virtual first care service.  

[00:01:15] If you listen to last month’s episode, I mentioned that our telehealth conversations for this season are going to be in two parts. One from the doctor’s perspective and one from the telehealth developer’s perspective. Well, this is part two. If you haven’t listened to part one with Dr. Cotliar, I definitely recommend that you check it out and learn how this technology is going to be utilized and where it’s going from the doctor’s point of view.  

[00:01:42] In this episode, we’ll be learning about Caitlin’s personal experience as a developer and a telehealth patient, why newer telemedicine companies have additional space to innovate, and how telehealth can create a more tailored and personal experience. 

[00:01:58] [Music]  

[00:01:59] Welcome to Caitlin Schumann! 

[00:02:04] [Music Ends] 

[00:02:04] Monica: Hi, Caitlin. I am really excited to talk to you because telehealth as a disabled person is one of my favorite things in the universe to not have to try to get in my wheelchair to a doctor and get into a very small room. Can you tell me a little bit more about what your product is that you’re developing and how is this helping the disability and chronic illness community?  

[00:02:24] Caitlin: Yeah, absolutely. So, right now I’m working at Firefly Health, which is a virtual first primary care service (is how we started) and we actually just launched, this past year, our health plan as well so we can kind of marry those two services together. 

[00:02:38] As you can imagine, being virtual first, almost a hundred percent of our interactions with our patients are virtual. So that’s via video, that’s chat, and then we have, you know, obviously email and phone and all those other ways to connect with our patients. But we manage everyone a hundred percent virtually. And then we have partnerships for in person services when that’s clinically appropriate for the patient that they actually need to go in person to be seen.  

[00:03:04] Monica: That’s really interesting. I was watching your website, you had a video about how that could work and it looked like someone just had a rash on their arm and videoed the rash and sent it over. And if that was something that was visually able to be diagnosed, they didn’t even need to leave. That, not even from a disabled perspective, but from a time, cost saving, parent with children perspective, that’s quite amazing. 

[00:03:26] Caitlin: Hundred percent. Yeah, and before I was at Firefly, I worked at Boston Children’s Hospital. So, actually along the lines of pediatrics and also chronic illnesses, a lot of my time, and a lot of my thinking around how do we leverage telehealth, how do we leverage these technologies is particularly around the challenges that families have in taking their children to be seen for their care? And in particular children that have disabilities or transportation issues, like you mentioned with your wheelchair and things like that. So, that’s a lot of my time that’s been spent on it. 

[00:03:56] And actually before I came to Firefly, I was actually a Firefly patient for about two and a half years. So, I have firsthand experience. I have this weird rash thing and I don’t know if [Laughs] I need to do anything about it. Can I send you a picture and can you tell me? So, there’s definitely a lot of value in that both for folks like myself, that normally don’t have a ton of healthcare needs and people who have more frequent needs from their healthcare providers and can actually get better access than they generally can from calling, you know, the front desk at a regular practice.  

[00:04:25] Monica: I probably need to deep dive a little further into this because I’m always fascinated with new healthcare ideas [Laughs] and possibilities, mostly on desperation. And a lot of the times I’ll see things that sound really great, but there’s no real backup for extreme needs, like chronic pain patients, or cancer, or rare diseases.  

[00:04:47] How does that work? I can assume from like a coding perspective and an AI perspective, that must be very hard to accommodate all of that. Is there a way that you guys are working on accommodating vast needs or is this where you’re just kind of beginning and you’re starting from a, we’re really trying to help the people who have the regular needs and we’re gonna hope to move outwards? 

[00:05:05] Caitlin: It’s a great question, cuz I think a lot of virtual first and telehealth type providers that are out there do tend to focus more on those generally healthy populations. Whereas Firefly, that’s definitely not our focus. We have quite a few different programs for chronic disease management and some of those more complex situations, like you’d mentioned cancer. 

[00:04:01] So, we do have risk scoring that we do when patients first sign up for Firefly. They fill out a health assessment that our clinicians, during their first video visit go through in detail with them and depending on where their risk score is and what types of preexisting conditions they have, we will put them in particular programs for diabetes, hypertension, behavioral health needs, those sort of things. And then we have, on the other end of the spectrum, managed more complex patients. Like some of our patients that do have cancer and have extenuating circumstance needs like that.  

[00:05:55] What we do at Firefly is we work very closely with their team that they have outside of their primary care. So, whether they need a referral to a particular type of specialist to support them, we can do that for them and help them navigate that. And our referrals team and navigation team will help them find those services, or if they already have a partner that they work with for whatever specialty, we work closely with them to make sure that we’re getting the notes back, that we can help kind of quarterback the patient’s care from a primary care perspective in concert with the care they’re already getting. 

[00:06:27] Monica: That’s really amazing. It’s a really interesting idea. I’m very curious if this means that someone who’s in a rural area or has a rare disease, if that means that your network is able to find doctors that they wouldn’t ordinarily be able to see? If they can get specialists that are in a different state, a different country, a different area? 

[00:06:46] Caitlin: Yeah, I would say that’s definitely part of the expansion in this current year. Right now we started – Firefly’s based in Watertown, Massachusetts, right outside of Boston. We started most of our work here, but over the next year we are expanding to about 38 other states. So, we are currently looking for network partners to be able to have those types of referrals in state if they do need hands on care. 

[00:07:08] We also have virtual specialists that we have either contracted with us to work with us and kind of talk through some of those things with patients, if they do have access needs, and they need to at least talk to a cardiologist before they can get in person somewhere else. We can also do e-consults. If there’s something that comes up in a primary care encounter, one of our primary care physicians or nurse practitioners. Can submit an e-consult, so sort of like an electronic understanding of this is what’s going on with this patient, this is what I think is probably the right force of action, but I want to consult with a specialist who actually knows this area very deeply, so I can come back and tell my patient the best next step for them. So we have a bunch of different ways that we manage that for our patients.  

[00:07:50] Monica: That’s really amazing. I have a disorder that’s a heart disorder that mimics a heart attack. The idea of not having to rush to the emergency room at 2:00 AM and deal with the $8,000 cost of that. But to be able to, I assume at 2:00 AM get a hold of someone and ask them about the symptoms and at least get some medical advice as opposed to just a person trying to figure something like that out. It sounds truly incredible. 

[00:08:13] Caitlin: Yeah, we do have urgent on call for all of our clinicians. So, they do rotations on any sort of urgent needs that would come up with patients during those hours. And we do try to intervene where we can and do a lot of education, especially with some of our patients that do have chronic diseases or have additional needs or certain conditions that may make them more apt to want and need care off hours type of thing, and may want to go to the ED because it’s something that feels, you know, urgent and severe to them. 

[00:08:39] So, we want ways for them to interact with us to be able to help them make that decision or at least to support, “Yes, you should go to the ED and we will follow up and we’ll figure out what the course of action is after that if that’s the right decision”.  

[00:08:51] Monica: It’s amazing how unthoughtful the body can be at what time it goes wrong. 

[00:08:55] Caitlin: Correct. [Laughs] 

[00:08:57] Monica: I do have a question about the tech side of things. Do you find that there’s a safety in having AI and technology involved in something like, a doctor prescribes pills that might counteract with another doctor’s pills, or that maybe something is missed in the diagnosis that you can see through like patterns of heart issues? Is there something in this technology that can help catch mistakes that can usually happen when it’s analog?  

[00:09:23] Caitlin: I would say we’re getting there. What we’re working on right now is there are partners that are trying to do a better job of aggregating that real world data about our patients, right? Because we can’t expect to rely on our patients to remember every medication or every dosage and perfectly recall everything they’ve ever had done previously. 

[00:09:43] So for better safeguards, for everyone really, we’re looking at how can we pull in this data from other organizations in a more real time, real life way, that’s gonna support both the clinicians who are caring for these patients and ultimately these patients’ care. So, there are things like that that we’re working on right now. 

[00:10:02] And then just kind of in the vein of AI and machine learning, internally we are starting to build out some machine learning for the chat itself, ‘cause right now we monitor that throughout the day, there’s real humans that are there, and answering you, and triaging it to our nurses, and our nurse practitioners, and our MD’s where they need to get looped in. 

[00:10:21] But we are looking at how can we use everybody’s time better and what kind of key words do we need to be looking for? They’re actually urgent messages. Like, how do we make sure we’re triaging urgent messages first, before we get to kind of the timestamp data of stuff that’s just like, “Hey, I might need a prescription refill and no rush on this” sort of thing. So, there’s many things like that, that we’re investing in this year that I think will make the comprehensive patient experience that much better than it already is.  

[00:10:48] Monica: Are you seeing any side of a marriage between telehealth and wearables? Like the watches that can at least keep a patterning of our heart and our blood oxygen levels? 

[00:11:00] Caitlin: Yeah, I think with wearables there has to be, and I’m not a clinician, so I will always defer to clinicians on how they feel  

[00:11:06] Monica: Neither of us are. [Laughs] 

[00:11:07] Caitlin: [Laughs] I would say there has to be very intentional reason why we wanna collect that data, right? For two reasons. One, because it can be a lot of data to analyze and you need systems to do that. You need somebody who is a real-life human to check on that every once in a while. And then the second thing is it can be a burden to the patient. So, we need to make sure that if we’re giving you that device and we’re expecting you to collect that data, that that makes sense to you and your care, and you’re getting the right feedback from providing that data. 

[00:11:34] When I was at Boston Children’s we had done a couple of different pilots with remote patient monitoring technologies and trying to understand what is most valuable to our patients. So, I’ve done that in the past, and at Firefly I think we’ve done a really good job of being intentional about that. Where if you’re on a particular program, like if you’re on our hypertension program, we will provide you a blood pressure cuff, and we will ask for your blood pressure readings once a week or whatever from you. 

[00:11:58] And that’s not always from your nurse practitioner. We actually have health guides that work with a lot of our patients that do more of that sort of lifestyle, coaching, nutrition, ongoing measurements that they’re collecting, and things like that so we can better manage your care. So, I think wearables do have a place, but I think they have to have a very intentional place in people’s care. 

[00:12:19] Monica: You just touched on some of the things that were the most valuable that you had seen both as a user of this product, and also being on the ground, seeing families, trying to figure out very complicated care in a complex healthcare system and being on the ground in seeing this very complicated healthcare working, what were the things that they were finding the most valuable and what are the things that they were finding the most challenging, and what did they seem to really want? 

[00:12:45] Caitlin: When I was at Boston Children’s probably the most impactful group of patients and team that I worked with was the home parental nutrition (HPN) team. So, these are our kids that go home with a central line of IV nutrition because they have short gut syndrome or something of that nature where they need supplemental. It’s not just a needle in the arm, actually there’s a procedure involved to get a central line. And that goes into your chest in a main artery vein. I could be incorrect about that part. 

[00:13:12] But it’s actually a fairly big deal and there’s a high, high risk of infection going home with those. So, obviously because there is such a high risk of infection, the HPN team at Boston Children’s was one of the first to actually pioneer telehealth on their own before there was a formal program for it because they just saw a huge need to make sure that when mom and dad and kiddo got home, do they have all the supplies that they need, that they actually need to care for this child at home for the first time on their own? And making sure that the supplies did get delivered in time, are they being stored correctly? So that way, you know, it’s at the right temperature. That if you do have a fever, how are we going to triage that? 

[00:13:54] So, with the devices that we actually ended up bringing in, a device called TytoCare, which is a multifunction device, and what was most valuable out of that, because there is such a high risk of infection, is catching non tactile fevers. So, fevers that mom or dad can’t feel on the child’s forehead before it gets to a point where it is tactile. And then the infection is probably pretty bad at that point. So, being able to intervene sooner and understand what’s going on with that child was really important.  

[00:14:25] And the other piece was we had Bluetooth connected scales. So again, these kids are growing. We need to make sure they’re gaining weight. So, being able to have a consistent weight on those kids from the same device, and same scale, was really important for the team back at Boston Children’s to make sure they’re getting consistent reading, not just, you know, scale that’s at home, scale that’s in the hospital, and they’re all kind of slightly off. So being able to have that one scale that everybody’s using was hugely important for us, especially for the dietician team to know that, okay, this kid is gaining weight, or they’re not and we need to change some things for them. 

[00:14:56] So those, I would say were the most impactful, but where my perspective kind of comes on, need to be very intentional about what we give people is if you don’t have a huge need for it, if your kid is well managed, or if there are components to that device that you’re not gonna use frequently, one it’s gonna be forgotten. So, when you actually need it, it’s at dad’s house, not mom’s house, or something to that effect. Or you go to use it the few times that you need it and you totally forget how you use the device. So, I’ve run into those sort of issues in the past and that’s where, to me, I feel very strongly that if we’re gonna give people devices, let’s make sure it’s something that you’re gonna use frequently enough that you know how to use it, you’re gonna have it with you when you need it. And that that data’s actually gonna be mutually beneficial to everybody.  

[00:15:42] Monica: Now watching this all get developed – and first off must have been so exciting – but you got to see a program begin. What about the program did you feel really needed to keep continuing through more and more advanced iterations? And where was some of the fallbacks that you were really excited to watch get better?  

[00:15:59] Caitlin: I think starting with fall backs, because it’s just a pervasive issue in healthcare in general, is just data accessibility and having so many different systems that need to bring data in, normalize it, have some sort of alert [Laughs] when it comes in, and having that all stored in one place so these poor clinicians don’t have to remember 500 different passwords and user names to different systems that they have different data stored in for their patients.  

[00:16:25] So, I would say that’s still the biggest challenge there is. Firefly – that’s like the number one thing we’re trying to work around where we’re trying to bring as much as we can, everything natively into our system. So there’s less of that, “I have to sign into this bespoke thing for this one thing that my one patient uses”. And it’s actually in the systems that they work in every day and that data is normalized and it’s tracked over time and those sort of things. So, those are still some really big challenges I think healthcare as a whole is kind of grappling with. 

[00:16:55] Monica: When you saw this actually begin in this children’s hospital and you saw how this could help out, what part of that technology is something that you really enjoyed and wanted to see continue in that program as it advanced?  

[00:17:08] Caitlin: Yeah, I think to me like the biggest win was that those few kids that we caught non tactile fevers on. That was like, “oh, my gosh, it did the thing that we thought it might do”. So, to me, that was like the really big excitement. The other pilot that we had going on at the time was with our patients that had cystic fibrosis and being able to measure their, gosh, I forget the name of the device now, the lung capacity and stuff that they have measured a couple of times a year. And we actually found out that those devices were comparable to the really expensive, crazy, big devices that we have in clinic when people come in. 

[00:17:42] So, just being able to save – to your point earlier – you know, one or two visits a year that you don’t have to trek downtown to Boston [Laughs] to have this exam done. You can actually do that at home, provide that data to your provider, have a virtual visit and kind of talk through what next steps are if you need change your medications, if you need to do X, Y, Z to better manage your care. So, those two things were really exciting to me that there are some, when you find that like good, sweet spot of the right device for the right type of patient, it can be really impactful.  

[00:18:10] Monica: I’m just feeling the mental health benefits of not having to be my own or my children’s physician all the time. To actually have backup, instead of relying on my professional patient knowledge, that would be very helpful. 

[00:18:23] Caitlin: And our patients that are seen a lot for a lot of different things, you are just as well versed, honestly, [Laughs] sometimes than some of our clinicians. My best friend’s mom has chronic diseases, and she knows so much [Laughs] throughout my life. It’s really incredible. And I think wherever we can reduce that burden is super important for our patients. 

[00:18:44] Monica: Sounds like a dream. I do want to talk about the other side of that dream too, which is the financials aspect. I had mentioned my last emergency room visit was billed at over $8,000. Can you talk a little bit about the financial implications from both sides, the sides from the patient and also the sides for the physicians? 

[00:19:01] Caitlin: Yeah, I think to back up and kind of talk a little bit about the history of the finances, telehealth pre-COVID was never consistently reimbursed in any way. States had to fight for legislation within their state. You had to hope your legislation was good enough, that there were no loopholes, that things would fall through. Being in Massachusetts for most of the beginning of my telehealth career, we did not have a statewide legislation to reimburse telehealth. So, we had to rely on individual relationships and contracts with the payers, which was really difficult to prove to them that they needed to pay for these services. When we couldn’t get the volume to show them that, right?  

[00:19:39] We can’t just have all these visits and expect everyone to pay hundreds of thousands of dollars out of pocket to prove to you that virtual visits actually work. So, I think that was like kind of the tension and the challenge in the beginning. And there’s still so many nuances to it even today. And, in addition to that, as you’ve probably experienced before too, there’s licensing challenges for clinicians that you have to hold a license in that state to be able to see that patient. So even though I can hop on a zoom visit and see you right now, that doesn’t mean I can actually bill for that visit. 

[00:20:09] So I think that’s where the challenge lays for a lot of our clinicians, especially because they wanna do right by their entire patient population. They don’t wanna just say, “okay, all my patients with with health insurance A can get this covered and I’m only gonna provide telehealth to them, but my patients on health insurance B I’m just gonna make them come into clinic”. That doesn’t feel equitable to most clinicians. So they don’t wanna do that unless they can blanket offer this to their patients. 

[00:20:34] For me, the really big motivation to coming to Firefly was I had struggled with this for so long being at a hospital system, and having to fight tooth and nail and explain to health insurers why they should really pay for these services. What really impressed me about Firefly was not only are they providing the virtual primary care, but now they’re coupling the health plan with it. And what was really exciting to me was to have control over what gets covered in that health plan and be able to be more cutting edge, be more innovative in what we are allowing our clinicians to prescribe to our patients for telehealth services, for digital therapies, and things like that that are newer technologies coming out that maybe aren’t fully proven, but we can be more flexible in how we cover that for our patients and be able to give them that exposure. So both the clinicians are protected on their end, they can continue to practice and be creative in how they solve problems for their patients and that our patients don’t feel restricted to what they can get access to.  

[00:21:34] Monica: COVID did, for better or worse, leap us forward in our ability in technology to have this inroad. I’m very concerned for a lot of reasons [Laughs] as to how a lot of this is going away now. How do we keep these inroads? 

[00:21:50] Caitlin: I think there’s a lot of advocacy work that still needs to be done here. I think, especially at the federal level. And now we have the data, right? Across the nation for two and a half years, people have been providing telehealth services in many different ways, in many different areas. And I think really just aggregating that data and making the case as to why this is better outcomes for our patients, why this is better cost overall, those things are really important.  

[00:22:16] But I think where some of the tensions still do come in for some bigger health systems is, and this is kind of getting into the nitty gritty of how some of the billing works, but for a lot of bigger health systems, they are billing for both an encounter (so, the actual visit that happens) and they’re billing a facility fee for the physical place that you are having your visit. So, what goes away when you get paid for telehealth is you’re only getting paid for the encounter. You’re not getting that facility fee. A lot of health systems are basing a lot of their financials off of the entirety of the bill that they were getting previously. So, that’s where I think some of the tension comes from sometimes too, is they have to reevaluate their bottom line and their physical space, and do we need all this physical space? To what degree can we do telehealth and where are the tradeoffs for us there? 

[00:23:02] So, I think it’s going to still be some pain, kind of working through that, especially for legacy systems that have only ever provided care in person. Whereas folks like Firefly and some of the newer virtual care type startups, they don’t have that brick-and-mortar physical space that they have to worry about. They’ve never based their business off of having payment for utilizing that space. They’re only getting the payment for the encounters. On both ends of the spectrum, yes there are the health plans and the federal legislation that we wanna get through. But then there’s also some tension, I think on people who are actually providing the care and trying to figure out how do they change their finances to keep up with this transition to a more virtual based care. 

[00:23:41] Monica: I love the nitty gritty. I don’t feel like we can properly, as people outside of the community or the profession, I don’t feel like we can properly advocate unless we understand what the problem is. And that’s a really big problem that I had no idea existed. Can you explain to us a little bit more about how to advocate, for someone who’s a physician who wants to advocate for this, to a company that wants to advocate, to someone like me in a wheelchair who really, [Laughs] really wants to advocate for this? 

[00:24:07] Caitlin: Yeah, definitely. When I was at Boston Children’s most bigger health organizations do have a government relations team. Ours was highly involved in all of our telehealth legislation advocacy work. I did a lot with them when I was there. So as a patient, you can kind of always get involved with government relations or a lot of the patient relations type groups. Bigger health systems will have some sort of support for those types of things that are going on. 

[00:24:30] There’s also bunches of different resources, I think, at each state’s level where you can kind of find out what’s going on. There’s also a group, it’s a lawyer group, called Foley and Lardner. Nate Lacktman is like sort of the lawyer telehealth expert in all of the United States. As far as I know, he’s been at the American Telemedicine Association and stuff, and I think going out of their website, they have a lot of really great resources on what’s happening state by state. What kind of legislation is there in place today, what are the limitations of that?  

[00:24:59] And then there’s many resources, I think, for each segment of the U.S. Like the one that I always looked at was the Northeast Telehealth Resource Center. And they have a lot of things on what’s going on in each state for legislation, what can be covered right now under different types of health insurance, what’s happening particular to Medicare and Medicaid versus the private insurer space. 

[00:25:19] So there’s a lot of different places you can get an understanding of what’s going on. And then how can you advocate, which is really just calling your legislators that are in your district and kind of telling them, you know, when there are bills up for them to vote on like why they should vote on it, why you care about it as a constituent of theirs. 

[00:25:34] Monica: Do you have any idea if there is already a federal bill that’s up and running that we can specifically name? 

[00:25:40] Caitlin: I have not kept up with that recently. Not that I know of, but if I do find anything after the fact, I will definitely pass it along.  

[00:25:47] Monica: I appreciate that! We will do as much as we can in our show notes for this, and a quick shout out to Resistbot, which you can use on your cell phone and text all of your representatives just right from your phone if you are anxiety driven like me and do not want to talk on the phone, or if you just need to quickly do that, that is something that is accessible to everyone for free. 

[00:26:06] You had given me complete anxiety when you talked about the passwords, I just started feeling so bad for every one of my physicians, because I can’t remember any of mine. That seems incredibly frustrating. And we were talking a bit about the nitty gritty of business. Is this part of the issue that there’s an experience on this proprietary software that’s not allowing people to cross over information or is it just a lack of having one central thing that keeps track of everyone’s everything? 

[00:26:35] Caitlin: There’s a lot of different things that play into this. So actually, in that particular example where like all these passwords that somebody might have to manage, the story, or the experience, that I think of where that came up for me was when I was at Boston Children’s and there was an endocrinologist who specialized in diabetes, and she was the lead for the diabetes program. And there are at least eight different types of they call continuous blood glucose monitors (CGM’s) that patients can be on, and it’s dependent on their insurance coverage. And these companies make the devices and then they sort of make the software that goes with it, but that’s maybe not their biggest area of investment. So, to be able to get that data and pull it somewhere else is not always common. 

[00:27:13] So, she was one of the only providers in that clinic that knew her login to all eight of them. ‘Cause she’s like, “I have to be in them so often I’m just ready to go”. But she shared the angst of doing that in the first place. And then for many of her clinicians and partners that work with her, that their panel wasn’t all diabetes patients like hers. 

[00:27:34] She’s like, “they don’t sign into them as much. They have a few patients that are diabetics, and they know maybe like the one sign in for the one that they have to sign into most”. But she’s like, “the other few, when people have a different CGM, they forget and they just say, ‘oh, just read it to me’ or ‘tell me what’s going on,’ or ‘I’ll look at it later’”. Or something like that. So, there’s a lot of struggle there. And that’s actually, I think born out of some of the insurance coverage, honestly, what the insurer will be willing to cover for that patient fully, for them to have a CGM. It’s just whatever partnership they have with that company. So that’s a bit of a frustration ‘cause the providers don’t really have a control over that piece. 

[00:28:08] For other aspects of it there’s definitely some proprietary reasons why people wouldn’t want to integrate with certain other types of technology. And then honestly, in a lot of times, some of these technologies were built in a time where they weren’t really thinking about interoperability in a more comprehensive way. 

[00:28:24] Technology changes really fast. So, they’re just not prepared for that. And it’s a large investment for them to make that data accessible outside of their own proprietary systems. And it’s really hard also to find systems that are going to be able to take in the data from multiple different sources and normalize it all the same. Everybody kind of collects data slightly different, especially if we’re talking about those CGM’s. They might have things in different places. They might graph things a little bit differently. 

[00:28:51] So, trying to get a technology that can pull all of that disparate data in and make it all look the same over your population, and then drill into individual patients is a lot of work to do. So, there’s a lot of investment, I think, into that area in particular. And I think that’s something that also Firely are super interested in because we want to be able to pull that data from other places that this patient has been to previously, and make their lives easier, and know something about them when they come in, besides just the few bits of information that we get from them, from their health assessment when they first start with us. 

[00:29:23] Monica: Is it different to develop software for the healthcare industry than other software? Are there FDA guidelines? Are there HIPAA guidelines? Is there infinite complications I’m not even beginning to grasp? [Laughs] 

[00:29:34] Caitlin: Yeah, there’s definitely a lot of different guidelines and stuff like that. There’s HITRUST, which I think came out way back in like the early 2000’s as just a way to correct some of that data. There’s definitely HIPAA guidelines that folks need to stay within certain bounds up to manage that data, how that data gets stored for seven years. When you sever a relationship with a vendor, they have to get rid of all that data that they can’t de-identify it and keep any of it. You know, things like that. 

[00:29:58] And then there’s different levels of security, which I think are more general to just managing secure data in the first place. I’m sure we’ve all seen in the last couple of years, especially during COVID, there was a bit of an uptick in ransomware attacks, especially on health systems. And it’s obviously a very bad look if you have some of your patient’s data compromised during those situations. So there is, I think, additionally, some anxiety in the healthcare space around how do we manage this data? Who do we partner with that can reliably protect our patient’s information?  

[00:30:29] Monica: Someone could come to you with the ultimate digital product right now for this, what would it be?  

[00:30:35] Caitlin: I don’t know, cause I’m not a technologist. So, I can’t say all of the things that [Laughs] it would need to do. But I think from like a real world example, I think the few processes that need to be streamlined are patient permission. I’m sure we’ve all seen, every time we go to a different provider’s office, we have to sign off that, “yes, you could share my data with my primary care physician. Why wouldn’t you share my data with my primary care physician?” 

[00:31:00] So, I think there’s things like that where if I was to be out of state, say I was like visiting family in Virginia or something. And I got into a car accident and needed to go to the hospital. I would love for them to be able to say, this is Caitlin Schumann, let me pull up her health history. I think that’s like the magic place that everybody wants to get to, right? And that’s the place that I think a lot of patients don’t even realize we can’t do that [Laughs] right now.  

[00:31:22] I didn’t realize that before I got into this space in healthcare. You know, as a grad student, I was like, “what do you mean you can’t just like, pull up my information. [Laughs] Shouldn’t you be able to do that?” And you, probably having had way more health encounters than I have in my lifetime, are like, “yeah, of course you can’t do that. I have to carry my health records with me everywhere I go”.  

[00:31:39] And I think that’s part of it too, right? Is that us as patients don’t have ownership over our health information, somebody else always owns the source of truth on that. And they make it really difficult for you to get even piecemeal parts of that. So, I think it goes both ways on that data should be accessible in a realistic way to people that are providing care potentially to that patient. And I think as a patient, you should have the right to own your data and be able to see what is happening to your data, and understand that, and bring that with you wherever you go.  

[00:32:10] Monica: Can you speak a little bit to that about patient data and why we don’t have access to that? Because I’ve read my doctor’s notes once or twice before over shoulders and was rather shocked at some of the things that I was diagnosed with that no one bothered to tell me. 

[00:32:23] Caitlin: Interesting.  

[00:32:23] Monica: Yeah, that was fun. So, I’m wondering why is that, that we don’t actually, we’re paying for it. Do you know why we don’t have that kind of access? 

[00:32:32] Caitlin: Yeah, I think this also goes back – trying to remember when this came out – the requirement for electronic health records, right? That started way back when there was a ton of incentives across the United States for many years, you know, gates of that, of, you know, you get X amount of dollars to your health system this year if you move everything to electronic health records. And those systems, again, were built way before we had the interoperability with technology that we do today. So, a lot of these things are like locked in these systems.  

[00:33:02] And if you go to a smaller provider office, like they have no way to extract that data for you in a real way, outside of like, if you’re lucky enough to have Epic, you maybe get MyChart, you maybe have Open Notes with your provider and you can read your notes. But in any way, for you to be able to pull that out is just like a non-starter for most hospital systems, they don’t know how to do it. And a lot of the EMRs are very rigid in how they manage that data and what you can do with that data, like where you pull that data into it. It’s not Google, [Laughs] it’s not the, just like, pull your file here, drop it and send it up and email, or, you know, put it in a system that somebody else can see it. 

[00:33:40] So, I think there’s a lot of challenges in frankly, archaic data systems to move forward and be able to make that data more transferable to other patients. And I think it’s also like where that naturally lives for a patient that’s not tied to a health system because right now we all have a billion, different portals that we need to sign into depending on which doctor’s office we’re going to today. There’s no central place that feeds into the one app that just the patient has, that’s comprehensive for them. So, I think there’s a lot of thought that’s done between getting the clinicians the data they need, which is super important for patient care, but there’s not as much thought on how do we get the patient the data that they actually have ownership over.  

[00:34:20] Monica: It’s just so amazing. We think of it from a perspective of we go on Google and we’re just so shocked at how much of our information is just for public. And the one time when we could really use that lack of privacy and it’s just not there.  

[00:34:33] Caitlin: Yeah. There’s definitely a lot of, obviously like people’s information should be private to an extent, but there’s a lot of challenges that HIPAA presents that I feel like don’t feel natural to the regular patient.  

[00:34:45] Monica: We discussed how it’s really helpful to have stuff together. I’d also like to talk about if there’s a benefit to having things a little separated. And I’m thinking of that by I’ve had a personal experience. I’ve had doctors who have been very judgmental, but they’re the only ones I can see for this specialty. But if I had to have them know my entire like gynecology history, it probably would’ve created an issue. Is there helpfulness in creating some separation between some of these?  

[00:35:15] Caitlin: Personally, from my experience, I wouldn’t have thought so, but I think you, as a patient may have had a different experience. If I’m thinking from a comprehensive understanding of what’s going on with this patient, and especially you now working for a virtual first primary care company, your primary care should be your central point. And ideally you wanna make sure that they have a comprehensive look at all the things that are happening with you and where you’ve gone for your specialty care. What they’re saying about your specialty care, how that impacts how they manage you more broadly and making sure you get the services you need. But from a patient standpoint, I will totally take a different perspective on that because I think that’s not one I’ve heard very often.  

[00:35:55] Monica: It does sound like there are more choices with something like virtual health, where I think that it does get discounted that you don’t always, especially if you’re in a limited area of a few physicians, that sometimes you don’t feel the safety that you would need to feel with the physician to give them your entire medical history. I’m guessing that with more virtual health, you have more options, and you can pre-screen your doctor better. 

[00:36:19] Caitlin: Yeah, definitely. I think we try to make that as comfortable as possible for our patients. I know a lot of our providers, and obviously from my own experience being a Firefly patient, they kind of talk through like, where do you wanna go? Do you have a preference? Are you looking for anything in particular when you go to this clinician so they can help kind of steer some of that to an extent. 

[00:36:39] And then what I really like is when I do get a referral, I don’t have to take the first provider that they refer to me. I can say, I’ve looked up this provider online myself, and I’m like, “ah, I don’t really like their reviews” or “they’re kind of far away” or whatever. 

[00:36:51] So I actually, when I message into Firefly now as both a health plan member and a patient, like more recently, I messed up my foot, so I was like, “I need to go to physical therapy. I think I have plantar fasciitis that need to get worked out. I need a PT that’s within 15 minutes of my house, ‘cause I need to be able to get there easily before and after work, they need to have good parking so I can get in, get out that sort of thing”. 

[00:37:13] So I was able to give those qualifiers and they were like, “okay, given the things you’re telling me, I can tell you this is what your options are in these areas”. And like, “tell me how you feel about these providers”. I think that’s where there is a little more flexibility. There isn’t, I think, more conversation that you can have with your provider that doesn’t have to be in that like strict 15 minute visit that you’re like, “okay, here’s all the things, and can you do this for me? And what about this thing?”  

[00:37:37] You can like forget about those things during the visit, have the visit, focus on that. And then anything that comes up after any ongoing conversation have over chat, which that kind of access you don’t get in a traditional health system that virtual care affords to you.  

[00:37:51] Monica: The amount of time it takes to pre-screen for physical health, let alone for a mental health professional is incredibly time consuming. Can you search for physicians with a specialty, like a gynecologist who can say I am LGBTQ friendly or so that you can make sure that you’re not going into a situation that you’re going to feel deeply uncomfortable in or unsafe in? 

[00:38:14] Caitlin: That’s a great question. So, this is not something that’s front facing to our patients right now. This is something that’s on the back end, but we’re working on kind of curating this information so we can eventually present it to our patients so you can kind of self-serve that information as well. But we do have two or three partners that actually power our operation on the back end for our patients. 

[00:38:34] So you come in and say, “I want a mental health professional that is LGBTQ+ friendly”. We take that information, and we pull that into our system and say, “okay, these are the qualifiers we’re looking for”. So, we want to be able to filter off of those options eventually. Or say that like you’re in a certain radius, you have these sort of five star ratings or whatever the case may be. 

[00:38:55] We do wanna give those options to our patients eventually, but for anybody who’s done a provider search in their health plan before you know that that data can get out of date very quickly. It’s very hard to get comprehensive data. So, that’s still a really big challenge in healthcare. So, before we put that in front of our patients, we’re kind of taking on the burden of pulling that data together, but then kind of additionally vetting it with real people on the back end to make sure that data is accurate, that we’re providing to you before we give you that recommendation.  

[00:39:24] Monica: That would be such a time saver. I cannot thank you enough for your time. I always love to end with a little bit of science fiction. In any world, it does not even need to be in healthcare, what is the technology you’re looking forward to the most? It doesn’t even have to be on the horizon yet.  

[00:39:39] Caitlin: Hmm. Probably teleportation [Laughs] if I’m being honest. I love driving, but I would love to not have to sit in a car for multiple hours trying to visit family and friends. 

[00:39:49] Monica: You’re gonna make me cry with that because it’s just the biggest thing. Like I was just listening to Neil deGrasse Tyson talk about this with Levar Burton. And they were talking about the possibly, not of teleportation of like dissolving molecules, but of like bending space and time, like Madeleine L’Engle, like just being able to walk through a portal and how much space that would give back to everyone to not have roads. 

[00:40:11] Caitlin: Right. And how much more frequently you would see those people that you’re like, “I just wish they still lived here on the corner”. Like I miss college sometimes where I’m like, “oh, I can just walk to my friend’s dorm”. Now they live 45 minutes away and I’m not gonna go and just watch a movie with them for an hour or two. [Laughs]  

[00:40:26] Monica: COVID really broke everyone’s heart with this, with not just being able to see people, but you’re right, that difference. I mean, we have things like virtual reality where we can watch a movie with someone with our avatars. But it does miss a lot of the physical hugs. And I love the idea of just being able to walk into Paris and go the Louvre for the afternoon. That would be…  

[00:40:44] Caitlin: [Laughs]  

[00:40:45] Monica: …Like not having to like, try to get my wheelchair on an airplane. Yeah, stop over in Paris. That would be great. [Laughs] 

[00:40:49] Caitlin: [Laughs]  

[00:40:51] Monica: Thank you so much for your time. I really appreciate it. This was wonderful talking to you. 

[00:40:55] Caitlin: Yeah, you too. Thank you for having me. This was super fun. 

[00:40:58] [Music]  

[00:41:01] Monica (Recorded): Thank you for listening to my conversation with Caitlin Schumann. I enjoy this conversation so much because Caitlin’s perspective in creating telehealth technology comes from her past and current experiences as a patient.  

[00:41:15] A specific way that I can see telehealth being a huge benefit for me is that with one of the medical conditions I have, POTS, it can manifest itself to symptoms that feel like a heart attack. It would be such a help to be able to speak with a telehealth professional, to make sure that what I’m experiencing is in fact POTS, not a heart attack or another condition that would really need emergency room care. This could give me and my family such peace of mind and allow me to avoid really expensive emergency room costs. I see telehealth being incredibly valuable for so many people. It provides increased comfort and additional flexibility as well as ways to monitor your medical needs. 

[00:42:01] The takeaway learnings from this episode are: 

[00:42:05] 1) Telehealth has the capacity to aid your judgment in making big choices about whether you need to go to the emergency room or seek emergency treatment. In being able to speak with a physician remotely, they can provide their expertise of the best step forward. 

[00:42:22] 2) Telemedical intervention provides additional access to medical experts that might not be available within driving distance.   

[00:42:42] 3) Online medical care, such as telehealth, is progressing into more than just video calls. As Caitlin mentions, some platforms allow for you to take pictures of certain conditions for feedback, use wearables to track additional health data, and take risk assessments to ensure all preexisting conditions are being monitored.  

[00:42:53] 4) Some telehealth services are also focusing to aggregate data so that your medication and medical information is all in one place.   

[00:43:05] The actionable tips from this episode are:  

[00:43:09] 1) If you are in the telemedicine development space, examine the opportunities for additional innovation by speaking with patients and doctors about what would be the most helpful for medical intervention.  

[00:43:23] 2) If you are a patient, think about where telehealth intervention may be of help in your life or the lives of the people that you take care of. Consider when receiving care remotely would be of the most value to you. 

[00:43:39] 3) If you are a legislator, or a government official, determine how passing telehealth reimbursement programs could benefit people in your state.  

[00:43:51] For more information on Caitlin Schumann and Firefly, please go and check out our show notes.  

[00:43:58] Every episode of Technically Sick has a page on empoweredus.org, where you can find extended show notes, including tips and takeaways, transcripts and relevant resource links. 

[00:44:10] If you would like to share your own tips related to this topic, or just to connect with us, visit the Empowered Us contact page or reach out to us on our social channels. 

[00:44:21] Technically Sick is an Empowered Us original, presented by Good Days, hosted by me, Monica Michelle. If you like this episode, be sure to rate and subscribe to our show. wherever you get your podcasts. 

[00:44:39] [Music Ends] 

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