Transcript: Andy Rosenberg discusses Long COVID on StartUp Health Now

Logan Plaster: Welcome to StartUp Health Now, the podcast about entrepreneurs and innovators re-imagining the future of health. I’m Logan Plaster. Today’s show is pulled from a recent interview. I had with Andrew Rosenberg, CEO and founder of a startup called Responsum Health, which Startup Health backed in 2019.

At Responsum, 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. The idea is that patients can connect and learn in a safe environment. Their recent app developed around Long COVID has exploded with activity. So I wanted to get on the phone with Andrew and hear what he’s learning from this community of patients. Stick around.

Andrew. Thank you for taking the time with me today.

Andy Rosenberg: Thank you, Logan.

Logan: So we’re having this call to talk about a really interesting project you’ve done around Long COVID. A knowledge platform around Long COVID. But before we get into that specifically, I want to hear more about the Responsum product in general. Tell me what you’ve built.

Andy: So we’ve built a family of chronic disease-specific apps, and around each of those apps we collect a community of patients. But those apps first and foremost essentially provide a service where a team of writers and editors backed up by technology are providing a professionalized daily search 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, patient engaging app experience. In addition to that, the apps also have a couple of other features, including a moderated community chat where we, in partnership with patient groups in each of these disease areas, collect individuals so that they can share their lived experience, their advice, their counsel, with each other,  all in a moderated, safe, area that’s sort of informed by articles that we suggest that they read.

Logan: Can you give me an example of one of your more active chronic disease platforms?

Andy: So chronic kidney disease, CKD, is probably the most active. We also have them in glaucoma, in uterine fibroids, in pulmonary fibrosis, and then most recently in Long COVID

Logan: 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 shared, there was a chat function, but it was really kind of taking a hard left turn. Does this sort of respond to some of those things?

Andy: It’s a great question. We started before sort of the whole fake news thing. We actually were working with Carnegie Mellon University back in 2015 that did a project where the initial goal was to help patients take advantage of the information that we all know is somewhere on the internet, but we don’t know how to find it, and we don’t know what to, what sense to make of it sometimes. We don’t know what’s outdated and what’s current. We don’t know what source to trust. So essentially the goal there was to, in partnership with patient advocacy groups that are respected in each area.

And, sort of abiding by a set of protocols and standards that eliminate any commercial bias in what we’re doing. We’re providing a curated web experience. Also a feed rather 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, though that’s a big part of it, but also lifestyle. How do I live with this disease? How do I make the most of my life given what I’m dealing with.

Logan: That expert moderation piece, that curation piece is huge and it’s what’s missing elsewhere. You said that you’ve partnered with organizations. How did you piece together that moderation? Are they part of your team?

Andy: Uh, it’s a combination. So yeah, there’s someone from our team that manages it. But for each disease app, we’ll have an expert advisory council made up of patients and physicians, 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. What’s acceptable information to share and what sorts of issues are controversial and maybe ought to be avoided, but we actually engage them in the conversation.

So if there is a post, for example, that really 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 councils. “Hey, would you be able to respond to this person?”

Logan: That’s interesting. How many individual disease apps have you or condition apps have you created?

Andy: So we’re about to launch our sixth in menopause. That’s in partnership with another pharmaceutical company. That’s how it often works for us, Logan, is that a commercial supporter will have an interest in building a community and investing in a community of patients in a given area because they’re moving into a therapeutic space and both in terms of wanting to raise awareness around a disease and to better educate and create a more educated, informed group of patients.

What we also know is that when we’re convening patients around these apps and they’re engaging with us and they’re trusting us, we can learn an awful lot from them. We can also recruit from them for clinical trials. So for the commercial supporters, there’s also great value not just in supporting the community, but also learning from the community and engaging the community in trials.

Logan: Well, that’s a great tee-up to talk about the app and platform for Long COVID, which I understand you launched in April 2021. So just walk me through kind of the formation of that.  I don’t know if there are any particular challenges associated with launching that and managing that.  Walk me through that process.

Andy: Yeah, there are. The long COVID app was unlike our other apps, in that we just saw that there was a need. We didn’t wait for commercial support. We didn’t wait to have a company to come out and say, ‘Hey, we’re developing  a Long COVID treatment and so we want to support this.’ We just recognized that we need to move fast.

This is a national, and international, public health emergency. I personally have a friend from college who is struggling mightily with the effects of Long COVID. And we very quickly recognized the need to put something out there and to provide a trusted resource of information, as well as to collect a community of people who are really challenged.

You know, you asked, Logan, about some of the specifics around COVID. There are some very unique things about a new disease that nobody knows and nobody understands. And a lot of people don’t even believe that it is real. So an awful lot of the patients that we collect on our chat, and we are able to sort of learn from watching and listening to the things they’re asking questions for, the times that they’re looking for support, and the sorts of support that they’re seeking is that they can’t find help. They can’t find people that believe them.

The symptoms of long COVID are so disparate. Literally hundreds. And there’s so little evidence, or data connecting and understanding why somebody might have brain fog. Somebody else would have pulmonological-related challenges. Other people might have sleep issues. Others might have menstruation-related complications. They’re all tied into the timing of them getting COVID, many times even asymptomatic COVID, so trying to sort of understand the disease is mission one.

And what we have right now is a patient cohort estimated in the millions of people. It’s estimated that 10 to 30% of people who get COVID, suffer from long-term effects, lasting from three weeks to indefinitely. Some of which are absolutely debilitating, can absolutely just put you out and create a lot of mental health issues, too. A lot of challenges with depression.

Logan: Yeah. Tell me about the sort of community, the demographics of the community that formed on the app.

Andy: Sure. So we’re, by the time this airs, we’ll probably be somewhere around 3000 patients in the community. It is the most active community of all the disease apps that we’ve created in terms of the rapidity and the activity around the community chat. The amount of sharing that’s going on. Like you would expect, it sounds stereotypic but it’s true, about three-quarters of the community is women. Almost 90% are patients, the remainder being caregivers or people who want to learn more about it to support other patients. And so we are really just capturing information right now about the full range of symptoms that people are struggling with.

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 that are struggling to make sense of this.

Logan: That last point is exactly what was really registering with me is that as important as the data points are that you’re gathering, how essential it is to have a forum for conversation, a place to share your health challenges with folks that will listen and understand.

Andy: Well I think in any chronic disease, or in any disease that people are dealing with, peer support can’t be underestimated. 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. I mean, I’ll give you another example of something that’s been a challenge around this is that, for each of our disease apps, in addition to the app and our website, we have social media channels for each one. So essentially Twitter, Facebook and Instagram. Only for COVID have we had to spend an exorbitant amount of time culling through the comments on Facebook, pulling away vicious, inaccurate, politically inspired, very critical comments that can really, if you’re suffering from the disease, from the condition, can just be devastating to read. People tearing you apart.

One of the nice things about being on this app is that you’re in a safer place. We’re not Facebook.

Logan: Are you referring to comments sort of negating that this even exists or, sort of saying you don’t actually have these symptoms?

Andy: The full gamut. Yep, exactly. It’s amazing how much of our time we’ve had to spend on sort of keeping our Facebook comment stream safe and accepting. Because it can be really a turnoff, as anybody knows in our business, to have a lot of junk in your social media feed.

Logan: That seems to be a significant piece of what you’re offering, this curation, this environment. You said there’s a chat function and through the chat, you’ve really learned the breadth of potential symptoms, potential challenges that people face. Any other significant things you’ve learned from having that chat function available, just sort of culling through people’s experience?

Andy: Well, the mental health issue is real. I mean, I think that in this country, we’re on the cusp of a real emergency. I mean, when you run the numbers, it’s in the millions and easily at the very low end, four to 5 million people right now in America have struggled with, or are struggling with, symptoms of Long COVID. And the amount of despair and depression that it’s creating in people. It’s not uncommon for it to lead to suicide. And we’ve all seen spikes in those numbers as a country in the last year to two years. Not that all of it is, of course, due to Long COVID, but I know firsthand of Long COVID’s impact on people’s mental health.

So we need to understand one of the things 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 why do different people react differently to COVID? What is it that it triggers in some people? And are there some, and this is what pharmaceutical companies are trying to figure out, is do they have molecules that are already approved for treating certain conditions that can be effective in truly treating some symptomatology, some cohort of patients with Long COVID, and how do we identify them and how do we match them to their therapies?

 Because right now, the Omicron variant is not going to be the last one. Unfortunately, COVID is not going anywhere for a long time. It’s gonna be a part of our existence and we need to figure out first how to stop COVID, but also how to deal with the ramifications of people who get sick.

Logan: You may not have a great answer for this, but you’re in a unique situation of having gone through all of these responses and the chat from the platform. And I wonder if there are any aspects of this that have really genuinely surprised you, or maybe even changed your opinion about what you thought Long COVID.

Andy: Well, one of the most exciting things on the upside for us as a company is that, Logan, our entire business is premised on the notion for individuals to get access to the information that we are, packaging and sharing with them in an easy to read, digestible, trustworthy format, that it’s going to make a difference in their lives and that this is going to drive improved outcomes.

We have begun to do benchmark surveys of patients when they first start on the app and then three to four weeks after. Asking them questions about the level of self-confidence they have in understanding their disease, in their self-confidence in raising questions with their doctors or their care team,  their mental preparedness for taking on the challenges.

And the numbers that we’ve seen have just inspired us in terms of what we’re doing. The percentage growth from the low single digits of people who joined when they first come to the app, looking for information in terms of their level of having a high level of self-confidence in knowing what they need to understand about their disease goes very quickly in the sixties and seventies as a percentage when they respond just after three weeks. And it tells you that people are desperate for information that they can understand and that they trust. But if you give them access to it, um, they’ll digest it and they’ll make better choices.

Logan: You know, we talk about knowledge being power, but when we take into account the mental health load of these chronic diseases,  it makes me think, knowledge is health as well. Knowledge isn’t just power. Knowledge can actually equate to real health metrics.

Andy: I couldn’t agree more. One thing that we’re not able to do at this point is to actually draw a direct line between people who use the app and get more knowledgeable and their clinical outcomes. But it doesn’t take much of a leap, at least for me, and probably not for you either, to imagine that if you see growth in a patient, self-reporting that they feel like they’re in better control, that they have a better understanding of what they’re up against, that they have a better awareness of the challenges they face, that they’re going to take their condition more seriously and their own treatment and more seriously, and that they’re going to drive a better outcome for themselves.

Logan: Last question. What are you most excited about for the year to come? Are you going deeper in these six disease areas or are you creating more apps or both?

Andy: Yeah, both, but we’re really tripling down on Long COVID. I have to say think every disease group, every chronic condition community, can benefit from an app like the Responsum Health apps, but I almost feel, Logan, sometimes, and I know my team feels this as well, that even though we were conceived in an era, you know, pre COVID, nobody had any imagination that this would happen, that it’s the perfect tool for a growing community of people that are desperately seeking trustworthy information from a place that they can count on and then to act on it.

Just in the last week, we’ve been reached out 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. One 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. So there are no established patient groups in this space. I mean, they can’t be more than a year old, right?

So everything’s new and everything’s, for better or for worse, at the start. And so, we’re excited to make our contribution to whatever the future brings.

Listen to the full interview on StartUp Health’s website.

Learn how you can invest in Responsum in our Republic funding campaign.