Global Perspectives on Digital Health

Shubs Upadhyay (00:00)
Welcome to the Global Perspectives on Digital Health podcast.

We are joined today by Dr. Jana Alagarajah. He is a psychiatrist, a public health doctor, and also technical lead for a digital health solution that is helping young people in East Africa with mental and sexual health.

He's also involved in policy. So we're really going to get the full gamut of his wide perspective to really understand some unique challenges in the mental health space, interacting with digital health, and also what it takes to really procure well and understand the value of these solutions over the long term. So very, very much looking forward to the insights that Jana is going to give us. So let's get into the episode.

Shubs Upadhyay (00:50)
Jana, welcome to the Global Perspectives on Digital Health podcast. You're joining us from Rwanda. And so the first thing to say is, hopefully listeners, watchers, just forgive us a bit if there's any delay, or Jana drops off due to potentially unreliable internet when we when we were just speaking and preparing before we started, we had a couple of drop offs. So

we'll do our best and hope the internet gods are in our favor, Can you start by telling us a bit about yourself, your background and how you got into where you are right now?

Dr Jana Alagarajah (01:22)
Thanks, Shubs. Yeah, firstly, thank you very much for inviting me on. It's a real privilege to be here. And yeah, thanks for giving me the platform to speak a little bit about my work. So yeah, so my name is Jana. I'm from London. by background, I'm a psychiatrist, trained in South London, and then converted into public health medicine. So I'm a public health registrar.

in the London training scheme. And I had been working in London doing public health work, getting increasingly interested in tech space. I did a fellowship called the Bite Labs fellowship, which quite a few people may have heard of, which really gave... Yeah, no, it's great. I mean, it's a great taster into the world of health tech for clinicians

Shubs Upadhyay (02:01)
heard of that, I've heard good things about it.

Dr Jana Alagarajah (02:08)
And so that gave me a good insight into the world of digital. And what I wanted to do was really apply some of the lessons that I had learned from the HealthTech fellowship into the mental health work that I had been doing. And also combine that with some of the public mental health work that I was doing as well. So I did some consultancy for an organization called Y Labs. I'll speak more about them later.

really enjoyed it. So was in Rwanda in 2021 for a few months. And then the position came up for a technical lead for the organization.

I did my master's public health at London School and focused on digital mental health interventions in low and middle income countries. So that was my thesis. And it really showed me there was a huge, there was a treatment gap basically. So this was another reason why I wanted to get into working in East Africa.

Shubs Upadhyay (03:06)
And you're also involved with the Health Foundation and the King's Fund in the UK on policy work as well,

Dr Jana Alagarajah (03:11)
Yeah, so I kind of wear three hats. So one is the implementation work I do, and sort of clinical and digital health implementation work. Second hat is policy working on sort of co-creation, how to basically build trust with users, so people who are engaging with the NHS.

and using digital tools So I've been doing a piece of work through the Health Foundation with the King's Fund thinking about mechanisms of increasing trust. And one of those is co-creation. Again, talk more about that, but that's where I go in with the policy stuff.

Shubs Upadhyay (03:50)
you

Dr Jana Alagarajah (03:54)
I've also been working with UNICEF with McKinsey health partners, with, sort of, yeah, more sort of at the think tank level, trying to think about ethics and equity as well around digital mental health, digital health, AI, bringing those sort of public health lens into health tech. and then thirdly, there's an academic arm of the, of the work that I do. So.

As I mentioned, I publish, I write academic papers on, specifically on digital mental health and equity. So yeah, there's a three sort of main buckets to my work.

Shubs Upadhyay (04:28)
So many arms to your work. Maybe like your middle name needs to be octopus or something. That's really, really awesome and exciting. I wanted to just touch on a couple of things you said. So the first is, certainly when we've talked, earlier this year at a meeting with the OECD in Paris. And I think one of the reasons we connected was the fact that, I was in the process of trying to

Dr Jana Alagarajah (04:32)
Yeah.

Yeah.

Shubs Upadhyay (04:52)
think about the concept of this podcast and what it was trying to do. And I think one of the things we really connected on was, it's really important that we bring the learnings of people implementing in these types of contexts that you're in, Because the only direction of learning is from the so-called West and so-called developed nations where we've got lots of tech here, we've got lots of investment, we've got lots of...

Dr Jana Alagarajah (05:08)
All

Shubs Upadhyay (05:15)
amazing stuff. we need to get we just all we need to do is somehow, like a knight in shining armor to you know, low and middle income countries, and we can just implement and like, everything's going to be amazing. And actually, it often doesn't work like that. And actually, I go one step further, or we go one step further and say, actually, we should be also thinking the other way. We can learn a lot, you know, in Europe in the US and in the UK. So so

Dr Jana Alagarajah (05:34)
Thank

Shubs Upadhyay (05:39)
I'm definitely going to be pressing you on some of that stuff from your insights and given your work with the NHS and policy, it sounds like you're doing a lot already on that as well. And then the second thing I wanted to touch on, because you've done this bite lab stuff, you're a clinician and you got a position as technical lead, right?

And that might be just something interesting to touch on because did you have any technical background before that? did you manage to land the technical lead role?

Dr Jana Alagarajah (06:02)
Yeah, no, think both are really interesting points. So I think the first thing, I probably should have said this in my bio as well, is that there's also a very personal element to the work that I'm doing. I'm a refugee by background. My parents came from Sri Lanka. I came from Sri Lanka when I was three. So

the idea of equitable healthcare, the idea of culturally nuanced and culturally appropriate, linguistically appropriate healthcare, and healthcare that also builds in cultural ways of seeing the, you know, the body, the world, you know, this pushing back against the sort of one size fits all way of doing things is really central to me as a person. And that sort of bleeds into my work as well. So I think there's a sort of personal mission.

there in terms of global health. I did a master's in global health and development at UCL maybe like 10 years ago before I got into all of this. And it really put me off doing global health work because they really highlighted this danger of the savior complex of going into other people's countries and cultures and bringing interventions that actually may do more harm than good.

I've always been very, very mindful of the potential to do harm, even with the best intentions in the world. And I also think that there's a sort of like artificial distinction sometimes between global health and local and sort of domestic health. So if you're working with a Bengali community in East London in Tower Hamlets or something like that, there may be a lot of...

comparability with working in another part of the world. And I think that actually there's certain principles that cut across the work that you do, whether it's in a high income country or low income country. So I also want to push back against this sort of distinction between global and local because we're in an increasingly globalized world. Tech is a great example of this. We can all access unless there's a firewall or some sort of

government block, we should be able to access similar kinds of technology using the web. I think that we, you know, I like to think of us all as, yeah, we're just all part of this sort of human population. And I think the principles that I've learned in East Africa are very much applicable to the UK and vice versa.

So there's also this sense of cultural appropriate care, that's actually, that should be important wherever you are. But the point about the technical lead, yeah. the technical lead position at Y Labs is really geared up for a clinician.

that the technical aspects are really bringing clinical knowledge, public health knowledge, mental health knowledge. I also work in sexual health and climate and health as well. essentially bringing clinical knowledge to a multidisciplinary team. So I work really closely with developers. I work really, really closely with designers. I don't do the backend stuff myself. I don't do the visual design or the...

you know, the sort of different aspects of design per se, but I will inform them and I will give them the sort of the content that they need, the content that's technically accurate, that's, evidence-based, that's data-driven, advise them on ways of, so that's from a sort of design perspective, from the implementation perspective. again, you know, these are, these are public health interventions, they're digital, but they're still public health interventions.

Shubs Upadhyay (09:31)
Mm-hmm.

Dr Jana Alagarajah (09:39)
So I am a clinician, but I work very much hand in hand with developers and designers to produce a sort of effective digital product at the end of the day.

Shubs Upadhyay (09:53)
Yeah, absolutely. And I think, over the years, the industry has moved from having just clinicians as a, can you, we built this thing, can you just check it at the end? Right? Where you just like then, clinicians like, well, what that, you know, what the hell, right? Like, just involve us at the beginning, and we can co create this. So definitely seen that.

Dr Jana Alagarajah (10:01)
Yeah.

Shubs Upadhyay (10:10)
evolution across the industry, where clinicians are involved not only as advisors, early in the product development process, but actually working hand in hand as part of the product development process. And actually from a regulatory and a quality assurance perspective, that's a very reassuring sign, I think, particularly if you've got something that's, integrating into clinical workflows, or actually trying

Genuinely improve health outcomes. So yeah, I think you've called out an important point and that's really important that the industry learns to work in that way with clinicians rather than just like a checkbox at the end. Let's get let's so let's go into to the work that you're doing with Y labs. And I just would love you to paint a picture of

Dr Jana Alagarajah (10:42)
Thank

Shubs Upadhyay (10:53)
what does healthcare look like for people in the areas that you're working? the problem, the context. And yeah, you know, what, you know, what are you looking to solve there?

Dr Jana Alagarajah (11:01)
Yeah, thanks. I guess for the purpose of this podcast I'll focus on mental health because I think that's, that's the sort of, that's my

pet passion yeah, so Rwanda is in East Africa. It's had a fairly traumatic history in 1994. There was a genocide, 800,000 people lost their lives very tragically.

and there's a significant, mental health burden that results from, from that, it's sort of an intergenerational element of, of that trauma as well. it's one of the poorest countries in the world. I think it's bottom 30 in terms of, GDP, and the health system, like much of East Africa is fairly, it's very basic. what it does have, in its favor.

is a government that is actually really pro-digital. So there's a government commitment and a sort political will to leverage digital technologies for healthcare. There are lots of examples of health tech innovation and interventions that have been trialed here. So it's a small country, both size-wise and population-wise. It's a fairly homogenous population. So it's actually a great petri dish to trial

innovation in. So an example was also a drone company that I think they called Zipline. And they, created drones to transfer blood products to rural areas. So that's an example of an innovative sort of approach to tech and healthcare here. And they also have a universal health coverage system here.

as well. they do have like a very firm government commitment to public health and universal health care and a strong commitment to digital as well. In terms of the problem, kind of the problem statement.

I think the main thing to highlight is that there's a huge treatment gap here. So if we look at mental health, populations in sub-Saharan Africa and actually in low and middle income countries are predominantly young. So nearly one third of global population is between 10 and 24 and 90 % of those live in low and middle income countries. also know, so at Y Labs we focus on adolescents and we know that adolescents have disproportionately higher risks of mental health conditions.

50 % of mental health conditions begin by the age of 14 and 75 % begin by the age of 24. And then the crucial point here is that there are significant barriers to care in low and middle income countries. So Rwanda obviously being one of them. So lots of mental health conditions get undiagnosed and untreated. There's a lack of access to quality care. There are under-resourced health systems. There's been an estimated treatment gap of

So this is between, you know, the need and the available treatment of 76 to 80%. and basically there's a huge, there's a huge treatment gap. so this is, this is the problem statement. and the other thing about Rwanda is I'm, as I mentioned, you do have this, this history.

behind it as well. So I think there's a specific additional need here. There's also a lack of, you know, in terms of the health workers, the staff, the staffing, Europe has 100 times more psychiatrists than Africa, which is from WHO figures. So there's a workforce issue as well. There's lots of reasons why the mental health system here is fairly fractured and fairly minimal.

And so there's this opportunity here to really make a difference in terms of adolescent mental health, mental health in general, but adolescent mental health being our focus.

Shubs Upadhyay (14:42)
Thanks for highlighting that. just to link, I guess, that problem area to the so called Western context, you you and I both worked in the NHS. You talked about the treatment gap in a context where there's a order of magnitude difference of healthcare workers. And already in the kind of so called Western context in the UK, you've got big problems with adolescent mental health people transitioning from child

mental health services to adult and being lost in the system. And the massive impact that that has in a relatively well resourced, you could argue health system, right. And then you've got, know, somewhere like, where, you said, 100 times less health care workers. And so yeah, I think it really highlights the scale of the problem or the

Dr Jana Alagarajah (15:11)
Mm-hmm.

Shubs Upadhyay (15:33)
uniqueness of that problem here. So some parallels, but yeah, very, very acutely visible in this context.

Dr Jana Alagarajah (15:40)
Yeah, definitely. think there are lot of similarities. mean, I think that even though the healthcare system here is very different to the UK, the UK is a public healthcare system that has significant financial pressures at the moment, but has had significant financial pressures for a number of years. And I think there are some similarities in terms of

Say in Rwanda, you know, if you are going to be treated for your mental health condition, it normally comes at a time of crisis. Maybe the type of crisis here is slightly different. But there are lot of similarities with the UK health care system. So like you said, you know, people may be lost in the system, people may not be picked up. There's a lack of maybe community outreach, preventative mental health care. And just this is from my experience, but the kind of patients that we

tended to see in inpatient settings tended to be the ones who are a danger to themselves or danger to someone else, often brought in by, you know, elements of the criminal justice system. It was a sort of firefighting approach. And I think it's a similar thing here. If there's someone who's acutely disturbed and say they're having a psychotic episode, that's when they may be, they may access mental health care, but that mental health care is very, very basic. And

has a sort of element of control and punishment as well. So I think there are quite a few parallels. The more you zoom in, you do see a lot of parallels, even though they may look different on the surface.

Shubs Upadhyay (17:10)
And it kind of touches on the point you made at the beginning as well of like, you know, given that we're much more, you know, due to migration actually our urban areas are very, very diverse as well. And so there's a lot to, there's a lot that's important to bring if we really want to deal with health inequalities and, you know, address treatment gaps, we need to think about where the parallels are in similar contexts

Dr Jana Alagarajah (17:21)
this.

Shubs Upadhyay (17:33)
So you've outlined this problem. what was your approach to try and solve this difficult issue?

Dr Jana Alagarajah (17:39)
Yeah, so that's a great question. So I think before I jump into that, I just want to really quickly make the case for digital. in terms of the work at Y Labs, some of our interventions are analog, right? Like we designed, in terms of the design that we do, some of it's been things like menstrual hygiene shelters and refugee camps. So it's like the kind of physical things. The reason why we chose to go down the digital route to

address this specific problem is that there's rapid internet growth in Sub-Saharan Africa. So I think Sub-Saharan Africa has some of the highest internet growth in the world. There's, youth are leading this like massive leap in connectivity. think the highest 35 % of internet users in least developed countries are between 15 and 24. So it's very much youth driven. And this creates the perfect sort of like potential for digital solutions to address.

these mental health inequalities and at scale, given the issues that I've highlighted in terms of lack of physical mental health infrastructure. So I think that's, that was the kind of reasoning behind going down the digital route. In terms of how we approached it, I can give you an example. So we have an intervention called Tegura Ejo Heza which is prepare for a better tomorrow.

This is in kinyarwanda So this is a youth driven holistic digital learning and peer support program. And it aims to increase mental health literacy and psychosocial support for Rwandan youth between 10 and 19 years old. So this is part of a grant, some seed funding that we got from Grand Challenges Canada to basically try and solve this problem. So we are a youth driven

co-design organization. So when we got this sort of like proposal, we didn't know what the end product would look like. That's part of the fun of it. We meaningfully co-create with communities. So we didn't roll in and say, hey, look, this is what we're gonna do. Can you just sign, tick box, say you're okay with this? We really didn't know what it was gonna look like. And also,

from my perspective coming from the UK, I had no clue how Rwandans thought about mental health. I literally, So actually from a sort of hubristic sort of humble perspective, I think this is great for me as well, just personally, because I really wanted to learn and understand how these people think about mental health, what was important to them. So we had this two year grant period

We researched and co-designed and prototyped this intervention with 90 young people across two urban youth centers in Rwanda. this is just after COVID, we were in these youth centers in the outskirts of Kigali, working with groups of young people. So we held 24 workshops with over 600 youth. We also involved peer educators as well as part of this.

And this is, and through these co-design sessions, we created a rough prototype. And then we created a sort of final, a final product, but all in, you know, conjunction or, you know, all co-created with young people and also with peer educators as well. So yeah, that was the process. was a sort of really interesting, immersive process of trying to understand what they wanted, what they didn't want, what...

was meaningful to them, what the problem was in their eyes. And yeah, I can go into a bit more detail, but I'll pause there.

Shubs Upadhyay (21:21)
Yeah, so that's really interesting because I guess a lot of people talk about co-design, co-creation, et cetera. But I guess the way that actually looks for everyone might be unique So for you, it was a series of workshops. And who were in these? Because I think another thing that's come out of previous podcasts that I've done is that it's really important that the people who are designing and coding, like the engineers as well, really need to be in the room with

patients with users, et cetera. so were they in those sessions as well? Because you need to be as direct as possible. There shouldn't be anyone in the middle between the user and the

Dr Jana Alagarajah (21:54)
Yeah.

Shubs Upadhyay (21:55)
and engineers and people coding. So I just wanted to know what specifically that looked like with you guys.

Dr Jana Alagarajah (22:02)
Yeah, I think that's a great, I think that's a really great point. So in the in the room in the co-design workshop, so this is this is youth led, it was young people between the ages of 10 and 19. There's also peer educators who in Rwanda work with young people around health topics, so primarily things like health promotion.

And so they were in the room as well, obviously a smaller amount of them, but it was essentially a whole bunch of young people, different genders, different socioeconomic statuses, different locations in Kigali as well. So we try to make that cohort as diverse as possible.

where we get into the conversations about that sort of trying to bring in developers, bring in, people who are designers, bringing clinicians, we were, so we had all of those people, but we were running the workshops. So we were there working with the young people.

So I think we have a very diverse group from Y Labs who were there. understanding what was important to young people in those workshops.

Shubs Upadhyay (23:06)
Yep.

Perfect. And do you have any specific aha moments that you had or an assumption that you initially had, but through this was like, man, that just completely blew that assumption out of the water. Have you got an example?

Dr Jana Alagarajah (23:17)
Yeah, there's quite a few, there's quite a few aha moments, but I'll give you one, which is the major aha. And this is something that I've taken away with me and I try and bring out when I'm at a conference or some sort of policy, policy think tank or on a podcast. this is the pinnacle of it. But yeah, I can talk about this, but this really came out. Yeah, this came out in the workshops and it was

Shubs Upadhyay (23:32)
or on a podcast.

Dr Jana Alagarajah (23:43)
we want the expertise of professionals, but the comfort of family in the digital mental health intervention that we get, right? And that was great. So that was a huge sort of insight.

Shubs Upadhyay (23:54)
Nice.

Dr Jana Alagarajah (24:00)
that really influenced how we approach this intervention. But I also think that insight is so powerful that it actually has a life beyond this project. It's actually something that I feel shapes how we should be thinking about digital mental health, especially when it comes to adolescent populations.

Shubs Upadhyay (24:23)
Absolutely. I think that's a really great thing to call out. And just at a meta level and just in terms of your approach, I think the key takeaway I have is, especially in this era right now of essentially, We've got this generative AI. Let's see where we can shoehorn it. To actually, it's very refreshing to hear that you actually went in.

with no idea what you what it was going to be that you build. Like a genuine listening exercise, the goal was not to go in with a preconceived idea of what you're going to build. And I mean, it's great that you got funding to do that because in some ways now funding, I would challenge that funding investment is more like, how do we get these technologies into a certain place? Right. Rather than exactly the approach that you said. I take away that.

Dr Jana Alagarajah (24:45)
I no idea. Yeah.

Shubs Upadhyay (25:08)
I think we need more examples of like, hey, we're going to fund people who actually are going and listening and they have the the technical ability, the capacity, the team that they need interdisciplinary to kind of build whatever would be needed to build. But not going in with a preconceived notion of what the tool will be,

Dr Jana Alagarajah (25:28)
Yeah, no, I think that's a really good point. Obviously, there's a ladder of, I think, in my mind, it's like the Nuffield ladder of participation. This might be incorrect. Apologies to any public health people listening. there's a spectrum in terms of participation, right? And I think that I'd very much, in the work that I'd been doing in the past, had it as a sort of more tokenistic exercise or a sort of

thing that maybe patients or the public could feed into, but the thing was already fairly well constructed and almost finalized at the point where they could give their views. What attracted me about the technical lead position at Y Labs and the organization as a whole is I really felt that it was not a tokenistic sort of way of doing participation. It really was youth driven.

Obviously we do come to it. There's a sort of, there's donor requirements, there's organizational requirements. There are some, there is a framework that we bring to it and certain sort of, we do have certain requirements. I think that, yeah, big shout out to Grand Challenges Canada,

to allow us to take this meaningful co-design approach.

Shubs Upadhyay (26:45)
Yeah, because it's kind of a risk from them because I guess like having to get that through the layers of bureaucracy there. It's like, So hold on. So what's going to be built? you don't know. Like what? Okay. What, what am I okay to like sign this off when it's like nothing tangible here yet? you just like signing off on a kind of methodology, right? So, so that, that's to me seems against the grain and I hear the shout out and it's great that there are funders who do that.

We need to find more of them.

Dr Jana Alagarajah (27:10)
Yeah, no, no, honestly, like, I think that in terms of innovation, I mean, there is an element of risk involved. I know that health, health professionals and risk, you know, I feel there's a lot of like, push pushing back on, on any risk, but I think that, I think we took a, took a leap and we really gave control to the young people. think that was the cool thing as well from a, I mean, forget about the product.

just from a capacity building, from an empowerment, from an engagement, from a trust side. Like we trusted them to answer, you know, meaningfully and honestly, and be open with us. Also in a culture where that mental health conversations don't happen here. So they really stepped up to...

Shubs Upadhyay (27:51)
Yeah, sure.

Dr Jana Alagarajah (27:54)
be open and honest with us about what was meaningful to them. And we tried our best to sort of respect that and acknowledge that in taking those views to create this product.

Shubs Upadhyay (28:05)
We've got so much to cover. So I need to move on. I feel like I could spend a whole day on that bit. But let's let's let's move on. So I wanted to go into Any big examples of challenges that you had to overcome? And what key things did you learn in doing this?

Dr Jana Alagarajah (28:17)
Yeah, so lots of challenges. I mean, this is a very challenging environment to work in, to do any kind of health work, but digital health work for sure. So I put challenges into three major buckets. So one is social cultural challenges. So most digital health interventions are designed in high income countries. And if they are used in low income countries, they're mostly borrowed, know, copied and pasted. So they're not culturally adapted. Also,

great NHS race and health observatory report showing that even in high income countries, people of color are not with different sort of cultural and linguistic needs are not accessing bespoke interventions again. So the same thing is happening in the global North as is happening in global South. So the challenge there was really to create a culturally adapted, appropriate, linguistically appropriate product. And that's no mean feat also because there's not

Shubs Upadhyay (29:01)
Mm-hmm.

Dr Jana Alagarajah (29:13)
know this is the first of its kind this is the first digital mental health tool that addresses stigma and mental health

So let, let me just give you a quick run through of the intervention and I'll go into the challenges, but the intervention, is called Tegura Ejo Heza which means prepare for a better tomorrow. We piloted it. we created it in 2021. It has two components. One is called Bohoka, which is an online learning platform, and it means 'for yourself' in kinyarwanda.

The second part of this is called Turi Kumwe, which means 'we are together' in kinyarwanda. And this is an offline peer support program. So both components were implemented with the help of trained peer advisors that we called Wellness Warriors. So yeah, this is the way that we approached the intervention. It's the first youth-centered digital self-care platform in Rwanda. Again, one of the very few

such interventions across any lower middle income country context. It's youth-centred, it's culturally appropriate. So if I go into the question that you asked me about challenges, I think that leads us neatly into the challenges because from the first challenge that I mentioned, the social-cultural challenge, there was nothing like this before. This is the first of its type. So this really means that we're kind of starting from scratch. There's also

very few culture, know, take remove the word digital, culturally adapted mental health interventions in Rwanda at full stop. So really we were, we were working without sort of like previous interventions or different sort of mental health targeted, culturally adapted mental health interventions for this population in Rwanda. So that, I think that was the first challenge. The second challenge is, a tech.

technical challenges. as I said, you know, sub-Saharan Africa, the connect internet connectivity is growing massively, especially powered by youth, but we still have massive connectivity gaps. So 94 % of the, of those who are unconnected to the internet live in low middle income countries. And all of those unconnected people, or you have certain groups that have disproportionately poorer connection. So rural residents.

Shubs Upadhyay (31:22)
Mm-hmm.

Dr Jana Alagarajah (31:23)
poorer people from lower socioeconomic groups. So there's very limited access for a lot of people in Rwanda. And then another part of the technical challenge was the lack of previous research data. So even finding things like prevalence, know, prevalence data on anxiety and depression in young people in Rwanda, it's really hard to find, you know, PTSD, psychosis, et cetera.

the data and the metrics don't exist or if they do exist, very, very, very basic

Shubs Upadhyay (31:51)
finding the ground truth and baseline seems like it's such a common issue. was just talking to Khushi Baby recently who are in India and they were talking about similar challenge. even in high income country, there's certain areas where we have really, really crappy data

Dr Jana Alagarajah (31:54)
Very difficult.

Exactly. Yeah. I think there's are some similarities, but across the board, yeah. there's, you know, there's not like a dashboard you can go to. There's not like granular or even, fairly high level, just like prevalence data. It just doesn't exist. so that's tricky. especially for a technical lead, you know, that's hard. And the third thing is a workforce capacity challenges. So,

Shubs Upadhyay (32:09)
Mm-hmm.

Mm-hmm.

Yeah, yeah, I mean, yeah, that's really

Dr Jana Alagarajah (32:30)
You know, the thing, the important thing to remember about this as well is that the app doesn't sit in a vacuum. We want it to interface with the mental health infrastructure, the healthcare infrastructure, the school system, et cetera. So we need to think about who the people on the ground that can like support young people with this. Like I said, Africa has a hundred times less psychiatrists than Europe and 30 times less mental health nurses than Europe. So there's a massive shortage in mental health care professionals.

and healthcare professionals also have very poor digital literacy. So for example, study based in Ethiopian healthcare workers found that nearly half, 48.2 % of them had poor, digital literacy levels as well. There's, there's nothing, I couldn't find anything on Rwanda, but you know, in sub-Saharan Africa, healthcare worker, digital literacy is, is very poor. So to try and engage, healthcare workers as part of this,

part of the digital intervention as well was fairly tricky. So yeah, we were working with those challenges and the ways that we solve them are threefold. firstly, co-design. So the co-design for me is the best way to tackle the cultural challenges. We don't wanna bring our assumptions, our ways of doing things. want the community to tell us,

Shubs Upadhyay (33:34)
Mm-hmm.

Dr Jana Alagarajah (33:54)
how they think about mental health, what are the barriers, what are the important things for them. We learn a lot. I'll give you a quote just to flesh that out, but I'd also say that co-design, like I said, this touches on my work with the King's Fund. How do you build trust? Asking people what they care about, is the meaning for them is a really great way of engaging them and building trust with communities, especially given the power dynamics involved.

in in the sort of, the, with the global health, from the global health perspective, you know, why would they trust us? We're just like from, you know, from high income countries, they don't know us. You know, it's, we need to sort of like create that relationship. And I think co-design also helps and facilitates that process.

Shubs Upadhyay (34:31)
Yeah.

Did you have to do any like preparing the ground before that, like building relationships with communities, community leaders, anything like that to, you know, even get those people in the room with you guys.

Dr Jana Alagarajah (34:50)
Yeah, so we exactly so we did. I mean, the cool thing, one of the cool things about Y Labs as well is that so the the Rwandan arms that we're based in the States, but we also have a an office here. And the office here is staffed predominantly by young people. I'm obviously not one those. But but and Rwandis, most people here Rwandis so that the you know, for example, one of the lead designers already had relationships with these youth centers. So we were we had sort of we know

Shubs Upadhyay (35:04)
Mm-hmm.

Dr Jana Alagarajah (35:19)
We had people who knew the context really well and were able to link up with key stakeholders to facilitate that process, even to get us in the door in the first place. yeah, that really, again, shout out goes out to my Rwandan colleagues who, again, to make from an ethics perspective, this is also Rwandan led on the YLabs side.

I'll give you a quote to to illustrate what we were learning from the co design. So the quote is, I'll sort of like contract a little bit. This is from one of the young people. So he said, it's not our culture to talk about mental health.

he went on to say, I am very strong, I can do this. They are not aware of the signs, symptoms and when to seek care for mental health. So really this points to this idea that post genocide, the optimal thing in Rwandan society is to appear strong, especially to those outside of you. And also this idea that if symptoms aren't

sort of externalized, they don't exist. So if you're feeling sad inside, but you're able to just hold it together, that's seen as a sort of positive in society here. So that gave us a really unique window into this is just one of the different insights that we, gained through the work. But I think that quote just shows us how different mental health is sort of like conceptualized here.

and this was really integral to us trying to create this culturally adapted tool. the second key learning, is, use diverse delivery channels. So as I mentioned, internet's patchy. people have smartphones, but a lot of people have like feature phones that are very, very basic. so we want to make sure that we can increase access, increase engagement by using.

analog and digital alternatives. Like I mentioned, we had the intervention was digital, obviously, but we had trained peer workers who created workshops where they were engaging with young people, also sharing their own stories. That's a huge thing around stigma as well as if a peer is saying, hey, look, I felt sad. I felt depressed. had I had some mental health kind of concerns that also helps break down those barriers of stigma. So making sure that we

use familiar technologies like mobile phones and try to design for different levels of tech is really important, but also to make sure that we have in-person analog alternatives for those people who don't have access, but also to create those relationships that help break down stigma.

Shubs Upadhyay (37:56)
I think that's an important like fundamental pillar. If you're designing something digital thinking about what are the touch points to the actual real world. Not only for people who don't have access, also especially in healthcare, like ultimately at some point in the patient journey or pathway, there's going to be something that's happening in the real world.

Dr Jana Alagarajah (37:59)
Thanks.

Thanks.

Shubs Upadhyay (38:18)
And then being very intentional about, what's the alternative if someone doesn't have a happy path on this journey and needs to step out or can't even start on it? What's the alternative so we're not exacerbating certain problems? I think that's an important takeaway in general for everyone.

Dr Jana Alagarajah (38:34)
Yeah, that's, I think that's a hundred percent agree with you. I also think that that peer support element, you can do that online, but I think that doing it in person, having events or having workshops in person is really powerful to be able to create that environment where people can speak about their experiences and be vulnerable and try and create that. It's, mean, really what we're also trying to do is create culture change or create like a change in the way that mental health is perceived.

Shubs Upadhyay (38:47)
Yep.

Yep.

Dr Jana Alagarajah (39:02)
then lastly, the last sort of key learning was designing for low levels of digital and mental health literacy. we, so in terms of how we created content, we wanted to make sure that all content was designed to be used with potentially low levels of mental health knowledge. And we also knew that the, intervention would be used by, know, if it was going to be used by

healthcare staff as well, or they're going to kind of interact with it. They also would have low levels of mental health knowledge as well. So we wanted to make it as basic as possible, use plain language, minimal text, clear layouts, lots of images, multimodal content delivery. So audio, video, text, just to also for a youth audience to make it, you know, not boring, engaging. The Kinyarwanda was written by

Shubs Upadhyay (39:45)
Mm-hmm.

More engaging,

Dr Jana Alagarajah (39:55)
obviously local speakers, but very vernacular as well to make it more sort of like youth friendly and accessible.

Shubs Upadhyay (39:58)
Mm-hmm.

Great. So that's a really, really good summary and colored with some really great examples actually to make that tangible for people who working in this space. Let's move on impact effectiveness, this area. Have you got a quick, and we've got so much to cover, but have you got a quick overview of the key headline impacts that this intervention has had?

Dr Jana Alagarajah (40:20)
Yeah, sure. So basically what we did is we created an endline study over five months with 220 yet randomly selected young people from the two youth centers. And we, we basically measured, it was a kind of pre post study. looked at a range of different validated mental health scales to assess impact.

We looked at stigma, wellbeing, depression, anxiety, and substance use, and we essentially found that there were improvements across the board in all five of these different areas. The most profound impact was around stigma, which was good because that was one of our key focal areas. Among those with severe stigma at baseline, 73 % of those exposed saw improvement compared to 57 % of those unexposed. It was a significant improvement.

in stigma scales as part of this intervention. Again, this is a pilot so really this is showing proof of concept and what the end line study did was that we could go back to the funders, grand challenges Canada and say hey look there's some positive signs

Shubs Upadhyay (41:16)
Yeah.

I guess like stigma might be seen as an enabler of other types of outcomes. And it could be defined as a primary endpoint and like a goal in itself, but how did that land? Because it's not, guess, like a traditional health outcome, maybe, but I'm very happy to be wrong here. And that's not to dilute any of its significance, but it might be considered by some to like, well, did it reduce

Dr Jana Alagarajah (41:34)
Yeah.

Shubs Upadhyay (41:47)
you know, this other clinical outcome that we really care about. So how did that land on the funders and people, you know, other stakeholders who had an interest in this?

Dr Jana Alagarajah (41:55)
Yeah, so I actually think that the funders were, think that they, that the call was really highlighting the need for a stigma reduction and mental health literacy tool. So they actually, the the other aspects of this were fairly additional. mean, I think this is one of the key differences as well between maybe high income and low income countries, because in say, for example, in Rwanda, before you even, there's such huge barriers around stigma and mental health literacy.

Shubs Upadhyay (42:04)
Nice.

Yes.

Dr Jana Alagarajah (42:23)
let's say you launch an internet-based CBT tool, no one's going to use it because there's such, because of these barriers, right? I think the first priority is to reduce the levels of mental health stigma and improve mental health literacy to a point where you can actually start, you know, having those conversations with people and, creating, points of intersection where you can actually try and use some those clinical like,

clinical tools.

Shubs Upadhyay (42:50)
So it's like a non-negotiable initial milestone that you need to reach before you can even dream about any of the other things that you're gunning for.

Dr Jana Alagarajah (42:53)
100 %

Yeah, 100%. I mean, like I said, there's, very little mental health infrastructure. for example, in Tanzania, where we also work, there was no mental health guidelines, zero for the country itself. were using WHO MHGAP guidelines for the country, but you're really working from a place where there's, there's very little here. So what we do know is that these barriers stop people even talking to, they, they won't even go to see anyone in the first place.

Shubs Upadhyay (43:15)
Mm-hmm.

Dr Jana Alagarajah (43:23)
know, for multiple reasons. So trying to address these, these are primary targets. And the clinical outcomes, okay, yes, they're great, they're great. But I feel like as a priority, trying to address these is really important in a country like Rwanda, and probably in lots of lots of other countries in the world. Whereas in the UK, of course, mental health stigma and literacy are still issues. But I feel like there's a less

Those aren't so much barriers, like they aren't barriers really for people to seek care in the same way.

Shubs Upadhyay (43:52)
Anything else on this, on the impact side?

Dr Jana Alagarajah (43:54)
yeah, so importantly, what this did was it allowed us to present, like we presented these findings back to the funders, And they were, they were impressed again, you know, this is a pilot. So all we were trying to do with this is show proof of concept. What happened is we got funding, based on, on this to scale this nationally. So we are now integrating this into our flagship.

sexual health platform, digital sexual health platform, is called Cyber Rwanda. And now we're going to scale this intervention into this sexual health platform. So it will have a mental health and sexual health component aiming to reach 140,000 young people in Rwanda aged between 12 to 19 from 2024 to 2027. So really this, the impact of this is going to be massive.

Shubs Upadhyay (44:44)
I mean, if you're talking about reducing stigma, right? You know, that's like, those are like two big high yield areas to put together, right? To cluster together. Yeah. Yeah. Yeah.

Dr Jana Alagarajah (44:51)
Two sides of the same coin, so I think and they're highly related as well. So I think I think that that's going to be massive from an impact perspective.

Shubs Upadhyay (44:59)
Amazing. Amazing. Well, I'd love to follow that and see what kind of impact that has when you scale it up. Amazing. Okay. We've touched on some of the challenges that might be in measuring the right things. Do have any insights to share on like how did you measure things?

given the digital infrastructure that you had, etc.

Dr Jana Alagarajah (45:19)
Yeah, in terms of observations, one of the tricky things is the starting from a point where the mental health literacy was so low and trying to get young people to kind of think, even just to think about mental health. So having sort of reported outcomes was tricky because they'd never, you know, a lot of them had never actually

sat down, thought about their mental health, thought about things like anxiety, depression, you know, a lot of it hadn't been externalized. And if you don't externalize it, sometimes it's harder to have that vocabulary to articulate that to yourself. So I think that, the starting point from this was, it was a huge barrier because of the, the sort of preexisting landscape around stigma and literacy, health literacy, even before getting into the, the sort of impact evaluation stage, I think,

Shubs Upadhyay (46:00)
Mm-hmm.

Dr Jana Alagarajah (46:06)
The way that we evaluated this again, because it was a pilot was fairly crude, know, pre post using this validated mental health scales. Again, another challenge is that a lot of those validated scales aren't culturally, you know,

Shubs Upadhyay (46:20)
adapted. so I was doing some reading, but was like you were using PHQ-9, which is quite well used in kind of Western contexts. how did that land in in a different context?

Dr Jana Alagarajah (46:30)
I mean, this is where the local staff came in. I think they could also, yeah, you would have these questions, but then they would have to, they would have to do a lot of like, you know, sort of background work around this to contextualize these for the, you know, the Rwandan youth. And, you know, even, you know, even the language, if you, translated it, you know, a lot of mental health vocab in, I think, Sub-Saharan Africa is actually quite physical. So makes tummy pain or heart pain, chest pain.

Shubs Upadhyay (46:35)
Yeah.

Yeah.

Dr Jana Alagarajah (46:57)
where people are actually talking about what would be considered depression or anxiety in the West. So I think the staff were the crucial bridge, the local staff, crucial bridge in giving the maybe extra sort of cultural nuance and context to these validated scales. But yeah.

Shubs Upadhyay (47:18)
And I guess if you're using it for a pre and post rather than a comparison across two different geographies, then as long as you're using the same questioning pre and post, you're measuring the difference, right?

Dr Jana Alagarajah (47:28)
Exactly.

Shubs Upadhyay (47:29)
Amazing. OK, let's move on because I want to get into. So we've gone through the work that you've done and kind of finding the problem, implementing, evaluating. And this is where you've been in the trees. And I kind of want to zoom out now, like forest level or 10,000 foot level or 10,000 meter level, right? In terms of working on

policy, procurement, funding, this kind of level, with Health Foundation,

Dr Jana Alagarajah (47:56)
Yes.

Shubs Upadhyay (47:58)
and the work you've done with UNICEF, etc. Have you got any insights and key things to share from that cross-section of work that you've done both in the UK and kind of with a more global focus?

Dr Jana Alagarajah (48:01)
Yeah.

Yeah. So, I think that the way to answer that is that the digital mental health ecosystem is complicated. so you have different actors with different priorities who are not harmonized and from an end user perspective, like as a clinician, I care, you know, my, my primary interest is the end user and their health outcomes. and this lack of harmonization.

I think is a huge barrier to making sure that we maximize benefits for the end user. So this is the problem across the board. This is my major sort of focus from the sort of policy side of things. And I think this ultimately affects every element of the work that you're doing. So if it's in terms of data, if it's equity, if it's in effectiveness, sustainability, scaling, whatever it is, this is a sort of generic thing.

I think that this is the kind of problem that I'm trying to solve in collaboration with a lot of those organizations that you mentioned. I think that within the context of the NHS, what has been interesting is I've spoken to regulators, I've spoken to sort of consultants who are working in this space, I've spoken to clinicians, I've spoken to a lot of different stakeholders in shaping my thinking. And I think that it's essentially,

from an equity perspective. So again, we wanna make sure these digital tools improve health outcomes specifically for those who need it most, who tend to be marginalized communities in the UK globally actually. There's a natural tension there, or it's an essential tension there between private companies and developers who are essentially,

prioritizing ROI and, you know, cause they're commercial entities, which completely makes sense. But there's the, know, there's a sort of, there's a, there's a sort of point of tension between their priorities and public health or NHS patient priorities. So I'm thinking about the levers that can be used to try and harmonize those, those goals align those incentives as well.

so far from the conversations I've had, I've found that procurement could be a really interesting avenue to go down because at the procurement level, if you're in a, you say you're, you're an ICB and you want to buy a piece of technology, there are already sort of, things like the DTAC process out there, but from the work that

Shubs Upadhyay (50:41)
You used a couple of acronyms there, ICB integrated care boards, they're organizations specifically in the UK. Is that right? Can you just elaborate on that and DTAC as well?

Dr Jana Alagarajah (50:51)
Yeah, so yeah, so the UK, there's been lots of changes in the way that the health care system has been organized. But yeah, integrated care boards are sort of specific regional units of the health care system, let's say. And the DTAC, I actually need to double check what I

Shubs Upadhyay (51:10)
I think it's Digital technology assessment criteria, sorry.

Dr Jana Alagarajah (51:11)
that sounds right. Yeah, exactly. So thank you for that. Yeah, so this is this is cooked up at the NHS. And it basically gives NHS organisations a set of criteria that they can use to assess the kind of health technologies that they procure for their for their sort of patient population. So at the moment, the DTAC doesn't really have much on equity at all.

And I think there's a huge gap there. So it's, it's set up to do, I mean, it's quite broad, but I think there's definitely a gap from the equity perspective. And I also feel like there's also a gap in terms of the clinician level, you know, just because NHS, so clinicians also recommending digital technologies that aren't, you know, sort of

procured by their board, right? So you might have a GP who waves their phone at you and says, Hey, you could, you could use headspace and you could use calm, which is great. But, there's also that gap in terms of, making sure that they're sort of evidence-based and they're approved, just like you would from a drug level, you know, your GP wouldn't just say, Hey, look, I've got this drug that I found, you know, it would need to go through the, BNF and it would have to be sort of approved for licensing at the

at the, at the sort of ICB level. So, I think that, I think procurement is a very fruitful avenue to try and encourage developers to bake in equity in terms of how they create their products. Because basically if they don't, you know, if they don't

They can't sell to the NHS, which is obviously a huge, that's a huge incentive for them. They want to be able to sell and access this market. So I think trying to incentivize, I mean, this is one of the incentives that could be used. It could also be sort of high level government tax breaks for companies that promote equity. But you know, I think at the procurement, the procurement level, I think is really, really interesting.

Shubs Upadhyay (52:48)
Yeah.

Yeah.

Dr Jana Alagarajah (53:12)
Like my thinking, I'm still sort of developing this at the moment in partnership with these organizations. So this is something that I think next year I want to get deeper into, but I think at the moment this is my sort of initial thinking around the issue.

Shubs Upadhyay (53:27)
Yeah, and this resonates a lot. And it's like one of the things that we've connected on before, right. so procurement is a decision making process on like

which vendor to use, right. And so, you know, I've asked this question before I've I've written about this before of like, how do you make sure you elevate the inherent value of various other things that are not just, you know, focused on dollars, pounds, right. So you know, examples of this are, you know, kind of good example of this in the US is like the quintuple aim, right. So you've got, of course, cost effectiveness.

Dr Jana Alagarajah (53:37)
Yeah.

Shubs Upadhyay (54:00)
which includes the financial argument is part of that. But then you've got clinician wellbeing, you've got patient outcomes, you've got equity, you've got these other aspects like population health is the fifth. And so you've got these as like these are inherently valuable. if you're otherwise only evaluating something

based on ROI, you're missing these other aspects which are equally important. And then what happens is you've created a way of natural selection, right? And so the vendors who will survive, who are the ones who like are able to be as lean as possible. And therefore like, you know, you've optimized for cost savings. Great. So that's what you've got, but you've missed out on all these other things.

Dr Jana Alagarajah (54:30)
Mm.

Shubs Upadhyay (54:37)
including equity. How do you elevate the commercial organizations who actually care about this stuff, right? Because maybe that makes them maybe makes it a bit bigger investment to invest in working with them, right. But actually, long term, you're addressing these other problems like clinician well being like equity, etc.

Dr Jana Alagarajah (54:50)
Mm-hmm.

Shubs Upadhyay (54:57)
And yeah, I definitely in the work I've done,

I've seen more and more RFPs

that include this as a category, at least in the US context But yeah, I guess there's a lot of work to do globally around elevating these other important things and inequity in particular.

Dr Jana Alagarajah (55:06)
Mm-hmm.

Yeah, totally. I mean, a hundred percent agree with you. think that there needs to be, there needs to be explicit thinking about, to, use, to coin your like phrase to elevate some of these principles, because if you let the market decide, you know, it's not going to happen, right. You're going to get interventions that are made for maybe.

quite affluent people who don't actually have the biggest mental health need. From a data perspective, we know that there are certain communities that have much poorer health outcomes. Those are the ones that we need to engage. We also know that a lot of those people also have access to smartphones and devices. There is a digital divide also in the UK, but a lot of people do have

you know, smartphones. So I think this is, this is a great opportunity. It's the same sort of opportunity that we're seeing in sub-Saharan Africa in the UK. but I think that because, yeah, because of the health system that we have, we can incentivize developers to think about these populations.

And actually really like, think a lot of developers do want to do that, but from a business perspective, the business cases and that's.

Shubs Upadhyay (56:28)
I guess like things like that make it a business priority, right? So yeah, definitely. Great. So much insight that you shared at various levels. We've had such a great cross section. I want to extract one more thing from you before we kind of wrap up. What's Jana's key takeaway for people building in this space for underserved populations globally?

Dr Jana Alagarajah (56:31)
Exactly.

Peace.

Go for it.

Shubs Upadhyay (56:54)
You know, there's a software developer, a clinician, a researcher, or an engineer who's building product person. What's your key takeaway from the work that you've done and what you've learned?

Dr Jana Alagarajah (57:05)
My key takeaway is build with people, not for people. I think that from an ethical perspective, from a, just an effective product perspective, from an engagement, from a sustainability perspective, this is really key. And I think that, this is also a great way of building trust and engagement with those.

users as well. So that's my mantra that if I could pass anything on to people that would be it.

Shubs Upadhyay (57:33)
Build with people, not for people. I like it. I like it. Okay. Jana, how can people reach out to you and yeah, contact you and be useful to you?

Dr Jana Alagarajah (57:42)
Yeah, I mean, LinkedIn is probably the easiest way. I'm really open to connecting with anyone who's interested in what I'm interested in. yeah, please. Please. Yeah. Look me up.

Shubs Upadhyay (57:52)
Perfect. Jana, it's been an absolute pleasure talking to you. Thank you for sharing your work, your insights, the work of Y Labs. Really, really useful stuff for anyone who's in this space at whatever level. So thank you for taking the time to speak to me, and thanks for being on the episode. Thank you.

Dr Jana Alagarajah (58:09)
Thanks, Shubs. And yeah, thank you for giving me the opportunity and thanks for indulging me with all your questions. So yeah, it's been really fun. Thanks. Bye.

Shubs Upadhyay (58:14)
Great. Cheers. Thank you. Bye.

Shubhanan Upadhyay AI (58:18)
My key takeaways from this episode. We really need mechanisms that promote true co-design with communities. That means genuinely listening to their problems, patients on their lived experience and clinicians on what gets in the way of good care. There were such powerful examples of the cultural context, especially on how mental health is stigmatized and how people experience it.

We sometimes need to revisit what success is for this context. Here, you couldn't dream of improving health outcomes without the groundwork of trust and challenging cultural stigma on mental health. So many insights that we can learn from, especially in our multicultural societies, a really great set of insights. In the next episode, we'll be talking to FIND and the Rwandan Ministry of Health. So it will really connect well to this episode.

So check out that one next. Please subscribe to the podcast and share with those who would benefit. Leave comments and a review. It really does help this reach more people who'd find this useful. Till next time.