A Dose of Optimism

From Pregnancy to Pain: Closing Gaps for Kids

Omkar Kulkarni Season 2 Episode 20

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0:00 | 29:27

What happens when the people who need care most are also the least likely to receive it?

In this episode, two innovators share how they are building solutions for populations that healthcare has consistently underserved, BIPOC mothers navigating the perinatal period, and children living with pain from complex medical conditions.

Priya Iyer, Founder & CEO of Our Roots, describes how her virtual peer coaching platform is working to prevent and address perinatal anxiety and depression in BIPOC and low-income communities, where mood disorders occur at twice the rate of the general population, and where access barriers, language gaps, and a shortage of culturally concordant care mean that too many mothers never receive the help they need. With a 65% reduction in depression and anxiety scores observed among participants, and a reimbursement pathway through Medicaid, Our Roots is pioneering what virtual peer coaching in maternal mental health can look like at scale.

Francesca Wuttke, CEO and Founder of nen, shares how her company has gamified cognitive behavioral therapy to help children with complex medical conditions understand and manage their pain. Children with cancer and other serious illnesses are placed on waitlists for pain psychology support that can stretch 12 to 18 months. nen is designed to fill that gap, with virtual companions, game-based CBT modules, and a clinical trial now expanding to potentially reach 80 to 90% of all children with cancer in Mexico.


Episode Resources:

CalAIM (California Advancing and Innovating Medi-Cal)

Alameda Alliance for Health

Dr Diana Ramos Surgeon General in California

Federally Qualified Health Centers (FQHCs)

Harper Cancer Research Institute - University of Notre Dame

Una Nueva Esperanza A.B.P.

Secretaría de Salud | Gobierno de Mexico

UNICEF España


Connect with Priya Iyer:

Priya Iyer LinkedIn

Our Roots Website

Our Roots LinkedIn


Connect with Francesca Wuttke:

Francesca Wuttke LinkedIn

nen Website

nen LinkedIn


Connect with us:

KidsX Website

KidsX LinkedIn


Children's Hospital L.A. Website

Children's Hospital L.A. Instagram

Children's Hospital L.A. LinkedIn


SPEAKER_02

Welcome to the Dose of Optimism, where I talk to the optimists in healthcare. My name is Omkar Kulkarni, and I work at one of the world's best children's hospitals where I lead innovation. I started Kids X, which is a premier international startup accelerator for pediatric innovation, and over the years I've met thousands of startups, investors, and innovators. Every one of them has a story, and every one of them is optimistic about the problems they're solving. On this podcast, you'll meet amazing people who will share their stories and what makes them optimistic about the future of healthcare. A little note before you get into this episode. Alright, let's get started. Our first guest today is Priya Ayer. Priya, I've known for many, many years. She sits at the intersection of entrepreneurship and social good, always finding ways to deliver societal benefit with the ventures that she builds. Today we talk with her about her latest venture, Our Roots, a company that's aiming to help moms impacted by poverty best navigate the perinatal period, largely through peer coaching.

SPEAKER_01

Our Roots is a social venture. And what we do is we virtually connect perinatal communities to peer coaches who share lived experiences to prevent anxiety and depression. And our work is really centering BIPOC communities, but also accessible to all. And I can share a little bit more about why that is. So we see in the United States that there are very stark racial disparities in care. And we know that BIPOC communities experience perinatal mood disorders at twice the rate as their white counterparts. And then in addition to that, we know that there are a lot of access issues, barriers, including language, including actually getting into a space for care, including a lack of concordant care once someone actually gets off a wait list when they've been waiting for months. So for all of those reasons, we've started our roots.

SPEAKER_02

That's great. So walk me through when does a person enroll? How do they learn about it? What does the actual interface look like? What are they actually engaging with? Walk me through it.

SPEAKER_01

So there are a couple of different ways that people can learn about our roots right now, and then a couple of things that we have in the pipeline. So right now, we form deep partnerships with federally qualified health centers, with Medicaid plans, and then also with large community-based organizations. And currently we're based in and around Oakland in the East Bay in California, looking to expand beyond that throughout California and then even nationwide, potentially. And then the way that people find out about it is they're referred through their clinic. So one of the things we do is a lot of education with our partners. We'll go to directors of integrated behavioral health, for example, and say, this is our offering. A lot of times our community members are either misdiagnosed or underdiagnosed. So why don't you offer this option to folks, regardless of if they're diagnosed or not, and they can decide to opt in. And based on that, they refer folks to us, and then our peer coaches will reach out through our platform, which is fully HIPAA compliant and we've built in-house. And that shows up as a text message on their phone. So on their end, all of the tech is very simple. They sign up to check in with a peer coach if they decide to opt in. And they can do up to 12 check-ins with a peer coach. If they're experiencing something more complex, we offer additional check-ins so that we never leave somebody in a space of need. And after that, they can come back to us if needed. So they typically will start with us during pregnancy because we all know when you're going through the postpartum period, it's really challenging. You're exhausted, and it's hard to build a new relationship. And this allows them to come back to us postpartum when they have an acute need. However, some people start with us postpartum as well. We also have folks that start with us if they experience loss.

SPEAKER_02

So is there a connection back to the providers that are taking care of the patient for their medical needs to the OB, uh, PCP, if you're finding things through peer coaching that perhaps require medical intervention, what is that feedback loop or that connection point back into their medical home?

SPEAKER_01

So it can look different in different situations, of course. So if we're working directly with the federally qualified health center and we've received a referral through them, they often have behavioral health providers for people that are in deeper need. So sometimes people will go to a psychiatrist, for example, at the health clinic and come in for peer coaching. There are other times where a community member might be experiencing a lot of stigma and they're not ready to do that yet. After they come to us, we still screen them for depression and anxiety. If we find out that they might have a high need to also have a therapist, we'll reconnect with the clinic and refer them back in and suggest that they get fast-tracked off of a wait list if it's possible or get access to a psychiatrist if there might be a need for medication. But in-house peer support people are not trained to replace therapists by any means. They're an offering of a different type of service. And then when we're working with the Medi-Cal plan, the same, they have several offerings of behavioral therapists that we would support people in getting back in as needed.

SPEAKER_02

Does Medicail or Medicaid cover peer support and peer coaching?

SPEAKER_01

They do. So through CalAIM, we've been able to work with Alameda Alliance specifically, which is a Medicaid managed care plan in Alameda County. And we're pioneering what virtual peer coaching will look like in maternal mental health with them. To my knowledge, we're the first provider that's offering this specifically. And that's allowing us to explore how we also partner with some of their other providers like Doula services, et cetera. But they do cover us through their community healthcare worker benefit.

SPEAKER_02

You mentioned the Doula. I mentioned there's lactation support, there's the OV, there's the PCP. Who's quarterbacking a lot of this? Who's helping make sure that all these different pieces are aligned so that the patient's getting comprehensive care?

SPEAKER_01

Yeah. So in our cases, it's the health clinic. So they're case managers at the health clinic. There are also these directors of integrated behavioral health that I mentioned, who have a comprehensive idea of where a patient is going and who they've had touch points with. But what we're accountable to is making sure that we're sharing our data back with the clinics as well as Medicaid. So they have a really good sense of who we've screened, right? Where they are on the depression scale, what some of their needs are that we've identified so that someone doesn't have to go through that process multiple times with multiple different people.

SPEAKER_02

How do you measure success? What are your metrics that you're always keeping an eye out for?

SPEAKER_01

Yeah. So I always like to look at the quantitative measures paired with the stories that people are sharing with us because I think that's really critical. One of the things I mentioned at the beginning was that a lot of the screeners that have been developed were not developed with the communities that we're working with, right? So we often find that people are not diagnosed and not supported and don't get the care and treatment that they need in the form that they need. And so we like to look at that. We like to look at the screeners, but we always ask people, how did this program transform your life? What new tools or skills will you carry with you moving forward? So we know on the quantitative level that when someone comes into our program to when they leave, we've been able to show drops in depression anxiety by 65%, which is more than clinically significant. And we also have stories. I can share a few stories I think that would resonate. One is a mama who came to us and had just left the hospital because she was in an abusive situation. She actually proactively asked us to share her story because when she came to us as a touch point, came to our peer coach, who are all of our peer coaches, I should mention, share lived experiences, language, and more with our community members, which is part of what makes us so effective. She was able to leave that situation completely, find housing, receive the support she needed, and reunite with her older child all while she was pregnant during 12 weeks. And that was all her doing, that having a person to connect with when she would have just been completely lost in a medical system and not have a touch point was really, really, really meaningful and powerful for her. And so that's why we always both capture the quantitative as well as these stories of transformation that people experience.

SPEAKER_02

I read recently that there's this often missed element of loneliness that women going through pregnancy. And I imagine that what you're offering, particularly because it's a different type of engagement, companionship, perhaps, it's addressing that too.

SPEAKER_01

Yeah. So that piece around loneliness, I think is really critical and maybe not talked about enough in this space. But I know Dr. Diana Ramos, our surgeon general in California, talks about this pretty extensively and often says loneliness is one of the largest non-biological predictors of depression during the perinatal period. And that particularly affects many of the communities that we work with. For example, if you think about the immigrant communities that we work with that might be here and don't have any family around them to support them and folks who may not have a partner or support person as they go through this entire really kind of vulnerable period. So I think that is a core part of what we do. And I should also mention as we grow and scale our impact and our reach, one of the things that we are trying this year is to do peer groups as well, which is also reimbursable through CalAim. So it allows for folks to not only have that one-to-one if they have more complex needs, but also to meet other mamas that are going through the same things as them, where they can continue to stay in connection with them beyond the time that they're in that peer group with them.

SPEAKER_02

How important are you finding the identity that they have in terms of peer matching or peer groups? Is there anything been surprising to you?

SPEAKER_01

Yeah. So right now, at the stage that we're in, we try our best to offer and connect people to who they want to be connected to. So we've seen that in certain communities, folks are like, I would love to have anyone that speaks my language, for example, or I would love to connect to any kind of person who shares lived experience and is BIPOC. And then in other communities, we find that folks are like, I would actually really prefer to have a black birthing part or mama work with me who might more closely align to and understand the experience that I'm going to. And so based on what people ask for, we try to align for that. But as we build out our technology further, I think we'll work to ask people a couple of questions up front and develop more of a matching algorithm. And then the other piece that I'll mention is that we've tried to really thoughtfully and ethically build out our technology to support us in this, right? Because I think it's not just about matching with the peer coach, but it's the entire experience that happens after that. And so we've done a few things. One, we've started a community advisory board to support us in the process of building out resources for different communities that are very tailored to those communities. Second, we've built out our own coaching framework in conjunction with a licensed therapist who's our advisor. And that coaching framework is focused on training peer coaches in skills rather than in a modular curriculum so that we can tailor to the needs of folks. And then the third thing is we're working on building out an AI companion for the peer coaches. So it's not community facing, but rather it's peer coach facing. And it will feed off of the actual resources that we've built alongside our community rather than being trained on outside random data. And it will allow us to basically offer real-time feedback, resources, and support to the peer coaches as they're coaching to better support and tailor the support to communities that's culturally relevant to them.

SPEAKER_02

I know Calum also incorporates CHWs to help focus on health-related social needs. Do you incorporate any version of that into the solution itself?

SPEAKER_01

We can't offer maternal mental health support without offering some of those other pieces of support. So technically, each FQHC, every clinic has a case manager that can support with that. And then sometimes those opportunities are missed. And we see maternal mental health not just as emotional support, but also ensuring that folks have diapers, formula, other things that they might need in the moment to be able to relieve stress because not having those basic needs is super critical. So we definitely train and ensure that we're up to date on resources. We do warm handoffs and all of that as well.

SPEAKER_02

What's the pool of peer coaches? How do you find them? How do you recruit them?

SPEAKER_01

So in the early stages, we did a lot of learning around how to appropriately train peer coaches. And I think one of the things that makes this model different is that we ensure that we're paying peer coaches fully, we're offering them benefits, and we're giving them a continual workforce development pathway, right? So this isn't a volunteer role and it's a full-time role often, and it requires a lot of emotional energy. We also spend a lot of time kind of building out a rubric, figuring out what makes an excellent peer coach. What skills does someone need to come in with? What do we need to train on? And now we have a much better sense of that. Because we're virtual, we can hire people on across the United States. So we're really focused on the shared lived experience piece. And then we train folks as needed on being able to help people access local resources. And we found that works really well in our context. And then to your last question around what is the pipeline? So we haven't yet been able to hire on someone that has gone through our roots and into one of our peer coach roles, but we have actually had someone who has been through one of our partner organizations, the Abundant Birth Project. We've wrapped them on as a peer coach, which is really exciting. And the hope is that we will be able to do that. So we have one mama, for example, was one of the first moms that I worked with, went through our roots and she just had her third child, just, as she said, drowning during that postpartum period, really struggling, didn't have a lot of support, was trying to overcome a lot of different things, and was also experiencing a disability at that time. She went from that to now joining our community advisory board. She's getting a bachelor's in psychology and actually wants to come back and work hours as a peer coach. So there definitely is a pipeline to support and build up a peer coach workforce, I think, in the process.

SPEAKER_02

What makes you optimistic about the future as you think about the work you're doing?

SPEAKER_01

Yeah. So one of the things I'm most excited about, both as a founder that gets to be in front of our community and talk to our community and be a part of that all the time, also as a researcher, is that we know that if you invest in mama or birthing parent up front early on, this can have really beautiful effects for child and more than three generations down the road, right? So it's not just what we're seeing in front of us. And I think that's hard sometimes for people to see. But I have gotten the opportunity to see that. And I feel very fortunate to see people in the moment really shifting their ways of wanting to parent their children when they've gone through such challenging things, but be able to retool that and really support themselves and support their children, changing their trajectory. So I'm optimistic just about building people's assets from where they are.

SPEAKER_02

There could be a person 75 years from now who's highly successful, making incredible impacts on society, and they can trace back a lot of their success to small things and factors that happen today, perhaps with our roots and the support their grandmother got when she was pregnant, right? That's the idea. And that's it's a really important way of thinking about the investment we make in moms and children and how they create long-standing impact for generations to come. Priya, thank you so much for joining us and talking to us about our roots.

SPEAKER_01

Yeah, thank you for having me and for all the thoughtful questions.

SPEAKER_02

My next guest is a vocal international advocate for pediatric digital health innovation, Francesca Watki. She is the founder and CEO of a company called NEN. They're based in Spain. And she's also the head of advisory at HLTH, the organization that brings together health innovation leaders from around the world at their incredible conferences and events. Francesca talks about both the challenges of pediatric digital health innovation, but also about her company, NEN. Francesca, thank you for joining me today.

SPEAKER_00

Thanks so much for having me. It's a pleasure.

SPEAKER_02

I read your article recently about pediatric innovation and how with many different indicators we are lagging behind innovation, investment, and progress, perhaps, as we think about adults and healthcare. Can you tell us what you found that was most surprising as you think about the problems and the gaps that exist between PEDs and adults?

SPEAKER_00

Yeah, absolutely. So I've been in the digital health space now for the past 10 years. When I decided to do something that was more directly patient-facing, I did a scan of the whole of the digital health landscape, and I was really surprised by how few innovative solutions are being developed for kids. Kids represent a quarter of our population, 100% of our future. And that was really shocking to me. So that kind of started my journey in creating men and in trying to find a solution for kids. But the more that I've been involved over these past four years, the more I've realized how disproportionately underfunded pediatric innovation is. And that's innovation on the digital health side, on the therapeutic side. I've reached out even to lots of the big pharma companies, and there are really just no de novo pediatric therapeutic programs within those organizations. It's really such a mismatch between where the value needs to be generated long term and the small investment that would yield a huge impact with pediatrics. If you look at pain as an example, which is the area that we're looking to solve for, and kids with complex medical conditions have these negative pain memories. That are really sticky and can survive through survivorship in the case of cancer into adulthood. And there was a paper recently in The Lancet a few years back that described 59% of a pathic, there's nothing physically calling causing that pain, but it's because at the time of the medical trauma, there was no psychological intervention to help these kids manage their pain and provide them with the coping skills to really understand what their pain was all about. Pain very much, there's a very impactful psychosocial component and helping kids navigate that is really important. And that's just one example. If you look at oncology, many of the standard treatment guidelines are around dosed-down approaches for children. And children are their physiology is different, their development is different, the types of cancers they get are very different. So I think we just in general need to be doing a lot more to protect the health and the future health of kids all over the world.

SPEAKER_02

So tell me more about Nan.

SPEAKER_00

So we've gamified cognitive behavioral therapy that's trauma-based to help kids understand their pain, manage their pain. The idea is not to take them off their pain meds, but to help them in the moment understand what's causing their pain and how they can manage it better. When children are exposed to a lot of medical procedures, they get very anxious. Very often it takes four or five adults to hold a child down to put a line in to take blood from them. That's obviously exacerbating the medical trauma that they're experiencing. So the idea with NAN is that in a very playful way, they can learn about their pain, learn about anxiety and depression. We can give them the skills via gamified modules around cognitive behavioral therapy that they can improve over time. They don't need to be in pain while they're playing the game, but the idea is that the virtual companions that we have Dolores, who delivers cognitive behavioral therapy around pain. I'm based in Barcelona and Dolores means pain in Spanish. And then Sarah and Tony are focused on the serotoninergic receptor pathways. Sarah focuses on anxiety and Tony on depression. And with these characters, they fly in and explain what's going on with the child. They have games to reinforce the knowledge. And throughout, they're being provided with the requisite skills to help them through this difficult time that they can then tap on when they are actually in pain.

SPEAKER_02

And what kind of impact are you seeing as it relates to clinical outcomes?

SPEAKER_00

So we're very excited to have just kicked off our clinical trial with our collaborators at the University of Notre Dame's Harper Cancer Research Center and a center in Pueblo, Mexico called Una Nueva Esperanza, which is we can think of it almost as a Ronald McDonald house for kids. Families go there, they stay for the duration of the treatment between three to six months. They have an apartment that they live there, they eat food, all of their meals together. They're provided with excellent psychosocial care, nutrition, dental everything. I went down there last month and the moms were doing Zumba in the courtyard. It's really an amazing center. And Notre Dame has a relationship with this center. And so we've kicked off a clinical trial that was intended to be 150 kids. But while I was down there, we spoke to the Mexican Minister of Health, who will now is really interested in what we're doing and understands the situation that many of these children are in, that they're put on wait list for 12 to 18 months without seeing a pain psychologist. So he is going to be working with us to extend our reach to between 80 and 90% of all the children with cancer in Mexico. So the study is likely to be about 600 kids, which is amazing and is just a great way for us to get men to more kids and their families who need the help, but also to generate that clinical evidence that's so important. I think trust in pediatric medicine is really paramount. And we want to make sure that we give the parents and also the clinicians and healthcare providers enough clinical evidence so that they can trust in our solution. So it's really evidence-based digital care.

SPEAKER_02

What kind of outcome measures are you looking for?

SPEAKER_00

So we're trying to mimic the validated measures that have already been used with CBT. So we've embedded things like the Wong Baker face scale, the FACS survey, the pain catastrophization scale, all of the well-validated metrics that are used in in-person cognitive behavioral studies. And basically, we've taken what works in the clinic and what works in the scientific literature and just digitized it in a way that's fun and engaging for kids.

SPEAKER_02

So what's next?

SPEAKER_00

So really important to the mission and vision and the really the reason for starting NEN, we're looking to democratize and disseminate pain management to as many kids as we can all around the world. So wherever a child is in pain, we want to deliver NEN to them. Once we have our clinical validation under our belt, we'll kick off the NEN Foundation, which will be our not-for-profit arm of NEN, where we'll work with NGOs and grassroots organizations. We're already working with UNICEF Labs in Spain, but we hope to expand that so that these groups can then disseminate NEN to kids who need it all around the world. It's software, so it's incredibly scalable. We can get NEN to kids in places of the world that they wouldn't have access to physicians and to psychiatrists or psychologists or child life specialists, like there are in the US or play specialists in the UK. So that's really a critical component of what we're trying to do at NAN. For the moment, we have a buy one, share one approach. So for every solution that's purchased, we'll save one for a family that may not be able to afford it and make sure that they get it. It's the Tom Shoes of Digital Health.

SPEAKER_02

It's amazing work. Francesca, thank you so much for joining us and all the work you're doing with NEN.

SPEAKER_00

Thanks so much for having me. It's a real pleasure.

SPEAKER_02

All right. Thank you for joining us for your dose of optimism. Make sure to check out our show notes to get more information about our guests and the work they're doing. Visit our podcast page on the Kids X website to join our podcast community and to learn more about pediatric innovation. Thank you to our sponsors and to our presenting partner, Kids X. Please subscribe wherever you get your podcasts. And remember, it takes a village to make sure our kids grow into healthy adults. So volunteer at your local library, help out at the community center, and if you're so inspired, donate to your local children's hospital. Alright, see you next time.