Latest / StartUp Health NOW Podcast / Responsum Health’s Latest App Puts Long-COVID Front and Center
Transcript
- 0:00[ on-hold music] The initial goal was to help patients take advantage of the information that we all know is somewhere on the internet, but- Mm-hmm... we don't know how to find it.
- 0:21[on-hold music] Welcome to Startup Health Now, the podcast about the entrepreneurs and innovators reimagining the future of health. I'm Logan Plaster.
- 0:38Today's show is pulled from a recent interview I had with Andrew Rosenberg, CEO and founder of a startup called Responsim Health, which Startup Health backed in 2019.
- 0:48At Responsim, Rosenberg and his team have created disease-specific apps that bring together curated information and news about those diseases, as well as a professionally moderated community chat.
- 1:01The idea is that patients can connect and learn in a safe environment. Their recent app, developed around long COVID, has exploded with activity.
- 1:10So I wanted to get on the phone with Andrew and hear what he's learning from this community of patients. Stick around. [on-hold music] Andrew, thank you for taking the time with me today.
- 1:28Thank you, Logan. So we're having this call to talk about a really interesting project you've done around long COVID, uh, a, a platform, a knowledge platform around long COVID.
- 1:40But before we get into that in, uh, specifically, I wanna hear more about the Responsim product, uh, in general. Tell me what you've built. Sure. So we've built, uh, basically a family of chronic disease specific apps.
- 1:54And around each of those apps, we collect a community of patients.
- 1:59But those apps, first and foremost, uh, essentially provide a service where a team of writers and editors, backed up by technology, are providing a professionalized daily search, uh, online for people with a chronic illness, and summarizing articles, collecting videos, patient testimonials, and voices, and feeding them to patients in a very dynamic, uh, patient, um, uh, uh, a patient-engaging, um- Sure...
- 2:34app experience.
- 2:35Uh, in addition to the apps, also have a couple of other features, including a moderated community chat, where we can, in partnership with patient groups in each of these disease areas, uh, collect, um, collect individuals so that they can share their lived experience, their advice, their counsel with each other, um, all in a very, in a moderated, safe, um, area that's sort of informed by, by articles that we suggest that they read.
- 3:01Can you give me, uh, an example of, you know, one of your more active chronic disease, um, platforms? Sure. Well, they're in, uh, so chronic kidney disease, CKD, is probably the most active. Okay.
- 3:13Uh, we also have them in glaucoma, in uterine fibroids, in pulmonary fibrosis, and then, uh, most recently in long COVID.
- 3:22Wa- was this in all, uh, was this at all a reaction to the kinds of online communities that formed, let's say, on Facebook, kind of unhelpful online communities where, sure, articles were being, uh, shared, there was a chat function, but it was really kind of, uh, taking a, a, a hard left turn.
- 3:41Uh, does this sort of like respond to some of those things? It's a, it's a great question. Um, we started before the sort of the whole fake news thing.
- 3:49Uh, we actually were working with Carnegie Mellon University back in, uh, 2015, that did a project where they, that the initial goal was to help patients take advantage of the information that we all know is somewhere on the internet, but- Mm-hmm...
- 4:06we don't know how to find it, and we don't know what to, what sense to make of it sometimes. Um, we don't know what's outdated and what's current. We don't know who, what, what source to trust.
- 4:17So essentially, the goal there was to, uh, in partnership with, um, with patient advocacy groups that are respected in each
- 4:25area, uh, and, um, and sort of abiding by a set of protocols and, um, and standards that, uh, that eliminate any commercial bias in what we're doing.
- 4:34Um, we're, we're providing a curated web experience, uh, also a feed rather than a, than a search experience for patients that are looking to learn not just about new discoveries in their given field or something of that nature, although that's a big part of it, but also lifestyle.
- 4:52Yeah. Um, how do I live with this disease? How do I make the most of my life, uh, given, uh, given what I'm dealing with? That expert moderation piece, that curation piece is huge, and it's what's missing elsewhere.
- 5:03You said that you've partnered with, um, organizations. How did you piece together that moderation? Are they part of your team? Uh, it's a combination.
- 5:13So yeah, there'll be, there's someone from our team that manages it, but we, um, we have for each disease, uh, app, we'll have an expert advisory council made up of patients and physicians- Hmm...
- 5:25um, uh, often that are suggested or in partnership with our patient group partners. And they have a role to play in not just setting the parameters for what's acceptable,
- 5:36uh, information to share and, and, and what sorts of issues are controversial and maybe ought to be avoided, but we actually, um, uh, engage them in the conversation.
- 5:45So if there is a post, for example, that really is, um, is seeking advice from a patient or from a doctor, we will bring one of the people and we'll sort of feed it to one of the people in our advisory council- Nice...
- 5:58and say, "Hey, would you be able to, to respond to this person?" That's, that's interesting.
- 6:02Uh, how many individual disease apps have you, or condition apps have you created?So we're about to launch our sixth, um, in- Okay... menopause.
- 6:11Uh, and that's in partnership with a, with a, an- another pharmaceutical company.
- 6:15That's how it often works for Slogan, is that a, a commercial supporter, uh, will have an interest in building a community, uh, and, and, and, and investing in a community of patients in a given area because they're moving into a therapeutic space.
- 6:28And both in terms of wanting to raise awareness around a disease and to, uh, better educate and create a more educated, informed group of patients.
- 6:39What we also know is that when we're convening tons of patients around these apps, and they're engaging with us, and they're trusting us, um, we can learn an awful lot from them. Yeah.
- 6:49Uh, we can also recruit from them for clinical trials. So for the- Oh... commercial supporters, there's also great value, not just in supporting the community, but also learning from the community- Interesting...
- 6:59um, and engaging the community in trials. Well, that's a great tee-up to talk about the, uh, app and platform for long COVID, which I understand you launched in April 2021.
- 7:10So just walk me through kind of the formation of that. Um, I don't know if there are any particular challenges, uh, associated with, with, with launching that and managing that, but kind of walk me through that process.
- 7:23Yeah, there are. I mean, so the Long COVID app was, unlike our other apps, one that we just thought, saw that there was a need. Uh, we didn't wait for commercial support.
- 7:31We didn't wait to have a company to come out and say, "Hey, we're developing a long ov- a, a long COVID, uh, treatment, and so we wanna support this." We just recognized that we need to move fast.
- 7:41I mean, this is a national, this is an international, um, uh, uh, emergency, public health emergency. Um, I personally have a friend from college who is struggling mightily with, uh, with the effects of long COVID.
- 7:55And, um, and we, uh, we very sort of, I think, quickly recognized the need to put something out there, um, and to, um, to, to provide a trusted resource of information, um, as well as to collect a community of people who are really challenged.
- 8:13You know, you asked, um, Logan, about some of the s- the specifics around COVID. There are some very unique things about a new disease that nobody knows and nobody understands. Hmm.
- 8:23And a lot of people don't even believe that it is real.
- 8:26Um, so an awful lot of the, the, um, the patients that we collect on our chat, and we are able to sort of learn from watching and listening to the things that they're asking questions for, the, the times that they're looking for support and, and the sorts of support that they're seeking, is that they can't find help.
- 8:45They can't find people that believe them. Hmm. They're... The symptoms of long COVID are so, um, uh, are so disparate, literally hundreds.
- 8:57Uh, and there's so little evidence and data connecting and understanding why somebody might have brain fog, somebody else might have pulmonology, uh, pulmonological, uh, related challenges.
- 9:10Other people, um, might have sleep issues. Others might have menstruation-related, um, complications. They're all tied into the timing of them getting COVID, um, many times even asymptomatic COVID.
- 9:25And so trying to sort of, uh, understand the disease is, is, is- Hmm... is mission one. Yeah. And right now there's a, there's a patient cohort estimated in the millions of people.
- 9:37It's estimated that 10 to 30% of the pe- of people who get COVID, um, suffer from long-term effects lasting from three weeks to indefinitely, um, some of which are absolutely debilitating. Yeah.
- 9:50Uh, can absolutely, um, just, um, uh, you know, put you, put you out. Yeah. And creates a lot of mental health issues too, a lot of, a lot of challenges with depression. Yeah.
- 10:03Um, tell me about the sort of community, the demographics of the community that formed on the, on the app, the platform. Sure.
- 10:11So we're, by the time this, uh, this airs, we'll probably be somewhere around 3,000, uh, patients in the, in the community. It is the most active community of all the disease apps that we've created- Wow...
- 10:21in terms of the, the, the, um, the rapidity and the sort of the activity around the, around the community chat, the amount of sharing, um, that's going on.
- 10:33Like you would expect, this sounds stereotypic, but it's true, about three-quarters of the community is women.
- 10:39Um, almost I think 90% are patients, uh, the remainder being caregivers or people who, you know, wanna learn more about it to support other patients.
- 10:49Um, and, uh, and so, um, we are really just capturing information right now about the range, the full range of symptoms, uh, that people are struggling with.
- 11:00Um, but as much as anything else, they really are looking for support, and they're looking for understanding, and they're looking to know that there's a community of people out there like them, uh, that are struggling to make sense of this.
- 11:11And that last point is exactly what was really registering with me, that as important as the data points are that you're gathering, uh, how essential is it to have a forum for conversation, a place to share, um,
- 11:26your health challenges with folks that will listen and understand? Well, I think in any chronic disease, or in any disease that people are dealing with, peer support can't be underestimated.
- 11:37Um, so anything that you can do to facilitate peer support. Especially with COVID, though, which has become such a politicized healthcare condition like nothing else.
- 11:48I mean, I'll give you an- another example of something that's been a challenge around this, is that for each of our disease, um, apps, um, in addition to the app and our landing page, our website, um, we have, um, social media channels for each one.
- 12:02So essentially Twitter, Facebook, and, um, and Instagram.
- 12:06Um, only for COVID have we had to spend an exorbitant amount of time culling through the comments-On Facebook, pulling away, uh, vicious, uh, inaccurate, um, politically inspired, uh, very critical th- uh, comments that can really, if you're suffering from the disease, from the condition, can just be devastating to read- Yeah...
- 12:28people tearing you apart. One of the nice things about being on this app is that you're in a safer place. Yeah. We don't, we're not Facebook.
- 12:34Um- Are, are, are you referring to comments sort of negating that this even exists or, you know, sort of saying, "You don't actually have these symptoms?" The full gamut, yep. Yeah. Exactly.
- 12:44It's amazing how much of our time we've had to spend on sort of keeping our Facebook, um, uh, comment, uh, uh- Mm... stream, uh, safe and, you know, and accepting. Uh- Yeah...
- 12:58because it can be really a turnoff, as anybody knows in, in our business, to, to have a lot of just, um, um, junk, um- Yeah... you know, on your social media feed. Interesting. Yeah.
- 13:08Well, that seems to be a c- a, a, a, that seems to be a significant piece of what you're offering, is this curation, this environment.
- 13:15Um, you said there's a chat function, and through the chat you've really learned the breadth of, um, potential symptoms, potential challenges that people face.
- 13:26Any, uh, uh, any other significant things you've learned from having that chat function, uh, available, just sort of culling through people's experiences? Um, well, again, the mental health issue is- Mm... real.
- 13:38I mean, I think that in this country we're on the cusp of a, of a real emergency.
- 13:44Um, I mean, when you run the numbers, it's in the millions and, it, you know, easily at a, the very low end, four to five million people right now in America have struggled with or are struggling with symptoms of long COVID.
- 13:57Um, and the amount of despair and depression that it's creating in people, um, it's not uncommon for it to lead to suicide. Um, and we've all seen spikes in those numbers as a country in the last year to two years.
- 14:12Um, not that all of it is, of course, due to long COVID, but, um, I mean, I know firsthand of long COVID's, um, impact on people's mental health. Yeah. Um, it can, it can, it's, it's... And so we need to understand.
- 14:25Uh, one of the things that, that we're really desperately trying to do, and we're not the only ones, NIH is pouring money into this, everyone's trying to get their arms around this, is, um, is, w- uh, why do different people react differently to COVID?
- 14:37Um, what is it that it triggers in some people?
- 14:41And are there some, and this is what, uh, f- pharmaceutical companies are trying to figure out, is do they have molecules that are already, um, approved for treating certain conditions that can be effective in truning, in treating some symptomology, some cohort of- Yeah...
- 14:56patients with long COVID, and how do we identify them, and how do we match them, uh, to their, uh, you know, to their, uh, therapies?
- 15:06Uh, because right now, I mean, with o- the Omicron variant is not gonna be the last one. Um, unfortunately, COVID's not going anywhere for a long time. It's gonna be a part of our, of, of our existence.
- 15:16And we need, uh, we need to figure out first how to stop COVID, but also how to deal with, uh, with the ramifications of people who get sick.
- 15:25Uh, you may not have a great answer for this, but you're in a unique situation of having, um, uh, gone through all of these, uh, responses in the chat, uh, f- from the platform.
- 15:36And I wonder, um, if there are any aspects of this that have really genuinely surprised you or maybe ch- even changed your opinion about what you thought long COVID was.
- 15:46Well, one of the most exciting things o- on the upside for us as a company is that, uh, Logan, our entire
- 15:55p- business is premised on the notion that patients that, that, or individuals that get access to the information that we are packaging and, and sharing with them in a, in an easy-to-read, digestible, trustworthy format, that's gonna make a difference in their lives.
- 16:12And that, uh, and that's gonna, uh, drive improved outcomes.
- 16:16Um, we have, uh, be- begun to do surveys, benchmark surveys of patients, that when they first start on the app, and then three to four weeks after, and asking them questions about the level of self-confidence they have in, in, in understanding their disease.
- 16:34Yeah. Um, in their self-confidence in raising questions with their doctors or their care team, um, their mental preparedness for, for taking on the challenges.
- 16:45And the numbers that we've seen, and, and I, I think we've provided you with some of the, um, the information from our surveys, um, have just inspired us in terms of what we're doing.
- 16:56The, the, the percentage growth from, you know, the low single digits of people who join when they first go, come to the app looking for information in terms of their level of having a high level of self-confidence and in knowing what they, what they need to understand about their disease, goes very quickly into the 60s and 70s- Wow...
- 17:15as a percentage when they respond, just after three weeks. Mm. And what it tells you is that people are, are desperate for information that they can understand and that they trust.
- 17:26But if you give them access to it, um, they'll digest it, and they'll, they'll choose better, uh, they'll, they'll make better choices.
- 17:34You know, we talk about knowledge being power, but when we take into account the mental health load of these chronic diseases, you know, it makes me think, you know, knowledge is, is health as well.
- 17:46Knowledge isn't just power. Knowledge can actually equate to real health metrics. That's- That, I mean, I couldn't, I couldn't agree more.
- 17:53Uh, one thing that we're, we're not able to do at this point is to actually draw a, a direct line between, you know, people who use the app and get more knowledgeable and their, their clinical outcomes.
- 18:04But it doesn't take much of a leap, at least for me, and probably not for you either, to imagine that, uh, if you see, you know, tremendous growth in a patient self-reporting, that they feel like they're in better control, that they have a better [ding] understanding of what they're up against, that they have a better awareness of-Of the challenges they face, that they're gonna take their condition more seriously and their, and their own treatment more seriously.
- 18:30Um, and, and that they're going to drive a better outcome for themselves. I get it. Uh, last question. What are you most excited about for the year to come?
- 18:38Are you going deeper in these six disease areas, or are you s- uh, creating more apps, or both? Yeah, both, but we're really, we're really tripling down on long COVID. I have to say, um, um,
- 18:54uh, I, I think that, that every disease group, every chronic condition, community can use, can benefit from an app like the Responsum Health apps.
- 19:04But I almost feel, Logan, sometimes, I know my team feels this as well, that even though we were conceived in an era, you know, pre-COVID, when nobody had any imagination this would happen, that it's the perfect tool for a growing community of people that are desperately seeking trustworthy information, uh, from a place that they can count on, and then to act on it.
- 19:29We've, just in the last week, we've been reached out by leading, or, uh, to, from leading patient groups in the United States and the UK, both of which are interested in talking with us about partnering on this app.
- 19:42One of the things that's so interesting about this experience is that unlike so many other disease areas that we're accustomed to, whether it's cancer or diabetes or HIV, this is all brand new. Yeah.
- 19:52So there are not established patient groups in this space. I mean, they're, they can't be more than a year old, right? Yeah.
- 20:00Um, and so everything's new, and everything's, um, um, you know, for better or for worse, um, at the start. And so, you know, we're excited to make our contribution, um, to, uh, to whatever the future brings.
- 20:14Well, Andrew, thank you for taking the time with me.
- 20:16I really appreciate that you're creating this community, [gentle music] that you're bringing in, you know, empathetic, knowledgeable, uh, curation to really create a, a good space for, for learning.
- 20:27And, uh, I know good things are, are to come. We're gonna keep watching Responsum in 2022. Thank you, Logan. Really appreciate it. All right, take care. Be well. Bye. Thanks for listening to Startup Health NOW.
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