Ellyn Winters-Robinson Spills the Tea on Building a Medical AI Companion with Heart

[00:00:04] Welcome to HIT with Grace, where we spill the tea on HIT. Today, I'm honored to welcome to the pod, Ellyn Winters-Robinson. She's the Chief Executive Officer of the Linus Health and Ask Ellen. So good to have you here today, Ellen. Nice to be here, Grace. So tell me a little bit about the career path that brought you to your different roles today.

[00:00:25] Oh, yeah. It's a bit of a wonky journey. I would say I think I do my career in 15-year sprints. So like you, I'm a comms person. I'm a marketer, PR person, storyteller. That's what I've done most of my life. Working in tech, actually. And for the last 18 years, I have been an advisor to tech startups, watching them go to market.

[00:00:48] And then four years ago, I was diagnosed with breast cancer and suddenly found myself on this journey that I never expected to be on. I don't think any of us do. And I mean, it's a really long story that I'll try and compress down. But I wrote a book, then ended up having a collision, sort of a tech meetup with another tech founder.

[00:01:06] He saw the potential in my book to basically turn the personality that I poured into my pages into an AI. And together we created Ask Ellen.ai, which is the world's first AI companion for individuals on the breast cancer journey. So not just someone who's been diagnosed, but their family members, their husbands, their friends, everything else.

[00:01:27] And that's sort of now become my life's work. Still trying to figure it all out. But just me alone, pushing this out to the world. Ask Ellen's now been used in 100 countries, spoken to in 50 plus languages, licensed her to Cigna Healthcare in the United States.

[00:01:45] She's been adopted by City Cancer Challenge, which was out of Geneva. And we now have a clinical evidence study as well that is showing that this isn't just a nice to have, but it's actually a really important part of the patient journey. Oh, I am so sorry you had to go through all that. But man, what a way to turn that pain into purpose and to really inspire hope and change and a better path forward for other women and men experiencing this for themselves. Yeah, yeah. Thank you.

[00:02:15] Tell me a little bit more about Ask Ellen. You mentioned it was the first AI companion built specifically for this kind of single disease journey. What convinced you that conversational AI, not just a portal or an app, was the right form factor for this emotional support? Yeah, it's a great question. I would say that in the early days of this, I didn't know anything. I mean, I was, this was all very new to me.

[00:02:38] It wasn't really until we'd started building her, the guys that kind of worked with me. We just started it as a basically a social experiment. Like we all just got together. They came and had barbecue at my house because they felt like they knew me. And it wasn't until I think it would be about, we were probably about three or four months in, in terms of building her. And I sent it to the head of breast imaging at a hospital in Toronto. I'm a Canadian.

[00:03:03] And she emailed me back and she said, this is amazing. How soon can I get this? And I was like, oh, I had a feeling that other people that were like me that had been diagnosed, that they would see value in it. But it wasn't until the clinicians started saying, oh my gosh, this is something we really need. So they see the gap too. So the gap that Ask Ellen fills. So she's just a friend. She is, she's in the friend zone. She's not there to dispense any medical advice.

[00:03:29] And it's a really important part of the patient journey. I found myself turning to other women when I was diagnosed and women and men turn to support groups and that's the work. But it's work that is invisible to the healthcare system. It's unpaid. And there's sort of this expectation that cancer patients is going to step up and help other cancer patients.

[00:03:50] But with that, when you've got humans delivering that kind of service, you get a lot of collective trauma. I joined my own Facebook groups and I was scared. They were scared. It went really dark, really fast. And so the way we built Ask Ellen is she's really there to be a companion and a friend because my whole personality and story is built right into her. So it does really feel very personal when you talk to her.

[00:04:16] And then we have a guardrail that says she's non-medical. So she'll answer only with my lived experience if you ask her a medical question and she'll always guide you back to her care team. And we also, the other guardrail that we put in place is dignified. She's always dignified in her responses. And that's an amazing guardrail because she's always very uplifting and supportive. And you can say the absolute most vile thing to her if you wanted to.

[00:04:40] And she's always been a kind of tell you that you're probably not a good human, but she'll do it in a way that never makes you actually feel bad about it. And then we also set in place that no one would ever pay to use her. That was something that was very important to all of us, that no patient, no caregiver would ever pay and that it be completely private. So we don't ask for any registration. We don't collect any information.

[00:05:03] And so that's, I always say it's, if you're Catholic, it's like talking to the priest, but there's, there's, it's going into the confessional, but there's actually not a priest on the other side of the door. So that gives people a lot of psychological safety so that they really do feel free that they can say anything and express their innermost feelings without any judgment or concern that it's going somewhere else.

[00:05:24] So wonderful. It's just amazing all around that patients are, and caregivers or whoever like is having access to this amazing support system through Ask Ellen. The industry talks a lot about patient-centered design. We're a patient-centered organization. We're a clinician-centered organization. So, but like, what is the difference between patient-centered design and true patient co-design?

[00:05:48] Yeah, it's a great question. So I think the industry, and it's all well-intentioned, there's a lot of designing for the patient. So we create an innovation because that's what we believe patients need, and then they'll bring patients in to react to it. And this is across everywhere in the industry, from technology companies that design for healthcare to providers who are innovating to pharma.

[00:06:15] Yeah, it's all, let's trot these patients in near the end and get them to react to it. The poor little things, they're so pathetic and vulnerable and everything else. And I always say like, when you bring, I mean, I don't really, I always say I'm an impatient patient. I don't define myself as a patient. Twice a year now, I go back and I'll see my oncologist. At that point, when I enter there and I put the hospital bracelet on, okay, I'm a patient.

[00:06:41] But the rest of the time, stop labeling me as that. I am a marketer. I am a mother. I am a tech person. I am a creator. And so I think that we do a real disservice by sort of categorizing patients in this way. Because now these, the tools that have become available, especially with AI, now what we're seeing is we're seeing people who have had an experience, lived experience as someone who's gone through a healthcare journey.

[00:07:08] And they're actually seeing all these gaps in the care journey that the system, people inside the system, inside the four walls of the clinic never see. So like ask Ellen, the fact that we address psychosocial and emotional support, that is not studied. That is underappreciated. I remember speaking to like 200 radiation oncologists at an event and talking about how scared I was. And they came up to me afterward and they said, we didn't know you were scared.

[00:07:35] And I'm like, you work in cancer care. You think the person on the other side of the desk isn't scared? Like, but they just don't see it. Or maybe it's their training kind of that they maintain that professional distance or whatever. So anyway, so I'm really starting to get very excited because I see other people who are stepping forward, who see also issues with their lived experience.

[00:07:58] And they're things that make a huge difference for the patient, but don't necessarily even touch things like diagnoses or the things that, you know, everybody's worried about when it comes to AI and medicine. So anyways, I'd like to see more of that. I'd like to see more patient builders sort of unleashed on the system because I actually think that now we're really talking patient centric, where the patient is at the innovation table and in fact, maybe leading the discussion.

[00:08:27] I just like what things could we solve for that we're not even thinking about today? It's so true. It's really being that patient informaticist, that person that's saying, I'm going to be the technologist in the room and I'm going to use my personal clinical experience from my personal clinical body as the expert to do that. It's really inspiring. It truly is amazing.

[00:08:51] And it should be that lived experience is just as valuable as anything else anyone else is bringing to the table. We won't get into today the whole issue of devaluing that. And again, sort of trotting in these patients because of the goodness of the heart, they're going to try and help to fix the system. And that's just sort of expected of us.

[00:09:16] I know you, Andrea Downing and some of her work around with Light Collective around patient rights and data rights and things like that. So big fan, big fan of what she's trying to accomplish as well. I mean, the whole patient right community. And I think you're right. I hate the term patient, right? Like we use the term patient because it's related to health care and it kind of is helpful. And like, but no, we're health care consumers. We are paying your bills, health care. Exactly. Your experts too. Exactly.

[00:09:45] And I really, if you look at big shifts that have happened, everybody talks about e-commerce for years. E-commerce is coming, e-commerce is coming. And then it took this sort of callous moment with the pandemic where now you can't imagine not having your Amazon package show up 20 minutes after you order something. And we've seen consumerization and banking and that sort of thing. But health care is still very much lagging. It's still very much an us versus them. I mean, the Latin etymology of the word patient means suffering.

[00:10:14] So I'm like, it's just, as I say, it's this broad categorization that I think has become a very convenient way of sort of seeing people. But it does keep that sort of us versus them mentality that I think is they're missing so much that could be accomplished if they started seeing patients as true partners. Could not agree more. You are a thousand percent right here. I'm snapping. I'm snapping because you are so right.

[00:10:44] And when we kind of think of the patient caregiver experience in general, we think about those 2 a.m. You wake up in the middle of the night and you're just in a fit and you're emotionally drained and just don't know. Your mind is searching for safety systems. And I know you're working on this amazing national study with Brock University and the Canadian Cancer Society on AI and this kind of patient caregiver psychosocial support topic.

[00:11:11] What is it for this category that AI emotional support is now being held to a clinical evidence standard? Yeah. So I really think the universe has some pattern, some design for me that I just keep saying yes. I'm very lucky.

[00:11:26] Just as it was very much a collision running into the guys at Gambit who built Askellen, it was very much a collision running into Dr. Silva, who is an oncology nurse herself and has spent her whole research career looking at survivorship in the broad category of women's gynecological cancers, but breast cancer in this case. And we were fortunate. And we were fortunate. So it's a large grant. It was a quarter million dollars and it allowed us to do this national study. So then that study is now complete.

[00:11:53] And we're like, it's cool because people are just starting to wake up and talk about AI. We actually have a two year head start. We've been working on this study for two years. So we're now coming into the conversation, which is still very new and fresh to people with like actual clinical evidence. And so we're building on Dr. Silva's study work that looks at how psychosocial emotional supports are not met.

[00:12:19] So we did a literature review that showed that women in survivorship, 30%, some 30 some percent will talk about the physical side effects of going through breast cancer. And there's many from the amputations that you go through and the surgeries and the chemotherapy side effects and the drugs that you're on forever. But 30 some percent are also expressing psychosocial and emotional fallout. So they're scared of recurrence. They go back for another scan.

[00:12:48] I literally, last time I went to see my oncologist and I'm unremarkable. Okay, like I'm doing well, but when they checked, my blood pressure was 173 over 93. Like literally the doctor thought my brain was going to explode. And she's like, you need to go get me some medication. And then I checked it for the week afterward and it was absolutely fine. So it's just that white coat that's that just that freaking out of walking back into the cancer clinic.

[00:13:15] So this research that we're now doing, and I'll step back and say, again, the system has this expectation. That kind of support is delivered by patient communities, which is not scalable, doesn't speak every language. There's lots of cultures that don't want to engage, all of those things. And I think support just looks different these days. Patients are used to using digital technologies in other parts of their lives. So they like, why am I going to go sit in a circle somewhere and sing Kumbaya with a bunch of people?

[00:13:44] Gilda's Club, for example, just closed here in Toronto because they're going with a more dated type of support approach. Anyways, so this, so we're now looking at can AI companions fill that gap in an extensible 24-7 way that speaks every language, allows for that safe engagement. And so we started on this study, we've now completed it, we're now doing analysis, we'll be publishing into 2027.

[00:14:12] It's going to be a very, there's going to be a lot of journaled work happening. And the results are incredibly validating. So we're hearing some big themes coming out. So trust the people that are using Ask Ellen actually really trust that their information is being protected, and that they feel safe talking to this AI companion. Psychological safety is another one.

[00:14:37] People are saying that they feel that they are more willing to express their innermost thoughts versus telling a human or their care team. And there's lots of things that they just feel weird or embarrassed about, like sexual dysfunction, where they just don't want to, or they want to at least rehearse that conversation before they get in there. Then the 24-7, so that ability to access care and support anytime. And caregivers.

[00:15:04] So the study looked at not just the patient's use of it, but caregivers. So about 30% of our participants were caregivers. And they all are saying, yeah, we actually feel like finally there's something for us. Because they're on the trauma bus too. Oh, absolutely. And I love that both are using it. Because to me, it seems so instinctual that both would find so much great information and support through it. Yeah. And guys, I mean, well, guys get breast cancer too. So women can be supportive partners.

[00:15:33] But the vast majority of breast cancer individuals, people with breast cancer are women. And dudes don't like to talk about their feelings. And my husband retreated to the garage for, you know, 300 days or whatever it was that I was going through treatment. Because he just didn't know how to deal. And they want to fix things. And so, and friends. When you go through cancer, a lot of people get ghosted by their friends because people don't know what to say.

[00:16:01] And so having that cancer. So in this case, she's a coach for everybody. You can even go and talk to her in the voice of a child. So you could say, why is mommy laying on the couch? Why won't she play with me? And it will give you language to be able to talk to that child in simplistic terms that helps them kind of get their head around what's going on. So, so beautiful. And so, so inspiring.

[00:16:26] Thank you so much for holding up this mantle for folks with cancer, breast cancer. I know it's truly going to change the game. And I'm excited to see where you grow and where you go. Now, while my listeners love to hear about amazing things happening, innovations happening in this space, they also love to learn from leaders like yourself about what drives you and what keeps you going. So what are things that you do to work your best to make a difference and just stay at the top of your game as a leader?

[00:16:53] Or someone kind of trying to push the envelope and get this innovation out there? I know, Grace, you work with other tech startups and founders as well. It's not an easy path. I mean, like we have a whole health court, the accelerator I work at, we have a whole health court right now. And I'm like, okay, being a founder is hard enough. Being a founder in health, because the walls of the fortress are very steep.

[00:17:15] There's a lot of, for good reason, there's a lot of protective measures that kind of gate innovation coming from the outside in into healthcare, which is both a blessing and a curse, right? So yeah, it's a path. I mean, I'm really lucky that I've got this clinical evidence behind me, because that is a very difficult thing to achieve as someone who's in the innovation space, who's not inside healthcare, who's not a researcher.

[00:17:41] Oh, I mean, last week, I'm like, yeah, I mean, there's moments where I wake up in the middle of the night, and I'm like, this is hard. I don't know how to do this. I'm trying to find licensing partners, because I never want anybody to pay for this. But trying to get big enterprises, A, get in the door, B, find enterprises that actually get the vision for what I'm trying to do. Push back past the, you're just some lady lunatic who's done this thing. So it can wear on you, but what keeps me...

[00:18:10] A lady lunatic with a technology within 50 plus languages across 100 plus countries. It's just like totally not true to what you're experiencing. Thank you. Thank you. The thing that keeps me going, I every now and then, so again, Ask Ellen is private, so I don't know who's using it. But we do have a feedback toggle. And from time to time, people will reach out. And so there was one two years ago, and when I'm feeling low, well, there's two things I do when I feel low.

[00:18:39] One, I go to my Google data analytics, and I look at how many people are using it around the world, and in the languages, and oh my gosh, somebody's using it right now. I wonder what they're talking to me about. So there's that. But then this one woman reached out, and she said, I want to thank you for what you built. And she said, I was... So I just, fun fact, I had a double mastectomy, and I didn't have any reconstruction. So I just have scars that go from here to here. And so I'm very... I can really relate to what she was saying.

[00:19:08] She said she had a mastectomy, and she was getting ready to take her bandages off and see it, and take a shower. So she was going to see her body for the first time. And I remember very much how that felt in that moment. And that's not something a nurse or doctor is going to be there to be part of. And your family member may not be there. I invited my husband, and he didn't want to see. And so it was something I had to do alone.

[00:19:35] And this woman said, I spoke to your AI, and I figured out we had a lot in common. And she said... Sorry. So anyways, she got me. She said, you got me through that line. And that, when I'm feeling low, that keeps me going. And I've had women reach out on Instagram saying, I just had them step to me. I'm laying in my hospital bed right now. Ask Ellen is helping me. Please keep doing what you're doing. And so those are the moments. And our research didn't just look at qualitative data. It looked at quantitative.

[00:20:03] And there's, I guess, pages and pages of comments about people saying, this saved my life. And so that's the stuff that keeps me going. I know I'm making a difference in my heart. I just have to wait for the rest of the world to kind of catch up with me. Oh, I love it. Now, to finish this conversation off right, where can our listeners find you online? I do have an Instagram Ask Ellen,

[00:20:30] but I'm most active on Flat Please because I'm a flatty. And then certainly you can go and talk to Ask Ellen at any point. Again, she's free and openly available. So you just go to www.askellen.ai. And I have a blog there as well that really speaks to that survivorship community and really on everything from everything around lifestyle,

[00:20:55] from sexual health to fashion to what your hair looks like after chemotherapy, all of that as well as sort of breast cancer news. And yeah. And then I'm Ask Ellen everywhere else in the world. So yeah. That's awesome. Now, before I forget, did you happen to bring tea with you today? And if so, what? Now, tell me about your mug or your tea that you're drinking. So I'm a black tea girl. I just like my tea, no sugar. I just like it with a little tiny bit of oat milk because regular milk's not my friend.

[00:21:25] And then because I'm a flatty, I like to collect boobs. Wow. And so this is one of my boob mugs. I love her. She's very lopsided. I have several tea mugs that all have boobs on them. And they look real. It's just so funny. The breasts on your mug look really real. They're very sort of lovely and wonky. And it's also a really nice big mug, which I love. If I'm going to drink tea,

[00:21:53] I don't want one of these stinky little cups of tea. It has to be a big old mug of tea. Couldn't agree more. Well, that is too good. Thank you for joining us today, Ellen. It was awesome to learn from you. Thank you, Grace. And thank you for being brave and sharing your story with us as well. It's just such an inspiration to be able to learn from you and to see how you are building off of what you went through. Thank you. Thank you. And thanks to you folks for joining us too. Check out the HITea With Grace with Grace podcast for more interviews with great guests like Ellen today.

[00:22:24] Cheers. Like a Girl Media is more than a media network. It's a community. We want to meet you and amplify your voice and the voices of outstanding women innovating in healthcare. Interested in starting your own podcast or hosting an event near you? Connect with us online or in person. We're here to support and empower you. Thank you. Thank you. you