Designing for Trust in Public Health with Victor Udoewa

Gerry Scullion (00:00.128)
Welcome back to the show, folks. Joining us today is Victor Uduwea, where he shares his work as a service design lead at the CDC in the US, which is the Center for Disease Control and Prevention. And he talks about building trust, making health programs fair for everyone, using design to solve real world problems in the public health system. Victor also opens up about his Nigerian-American background and how it's shaped his journey and explains the importance of listening to and working with communities. This chat is full of simple but

powerful ideas for anyone who wants to make a difference in the world. It's a fantastic one. I know you're going to enjoy it. So let's jump straight in.

Gerry Scullion (00:45.006)
Victor, I am delighted to have you here. We've just spent the last 15 or 20 minutes talking about Rachel Thecus, who connected us. But I've seen your name and I've followed you and watched you kind of over the last couple of years in the nicest possible way. That's not meant to sound really stalkerish. okay. That's what you were saying. Exactly.

I've been stalking you, I've been sitting outside the front of your apartment for years and delighted to finally get to speak to you. But maybe we'll start off Victor, maybe we'll just tell us a little bit about yourself, where you're from and what you do. Yeah, I'm living in Washington, DC at the moment. I grew up in Houston, Texas, and I'm a dual citizen actually. So I'm both Nigerian and United States American.

I come from an African indigenous people group called EBBO in the Southeast of Nigeria. The first people I believe who came into the area today known as Nigeria. And so I kind of carry that with me. Lived in different places around the world. I've lived in the UK, in London. I've lived in South Africa, for instance, as well. But lately I've settled here, have a family and trying to do life in Washington, DC with my community and affect things in the federal government.

very, very cool. So at the moment, I know we were speaking before, you've got lots of an interesting background, worked at NASA and so forth. You're now at the Central Office for, what's it disease you say? Yes, Centers for Disease Control and Prevention, CDC. Okay. So what's your role in there at the moment? Tell me what you're working on.

Yeah, I'm a service designer. They call me service design lead and I help design all of the AI, machine learning and data interoperability products and services. But that's my specific assignment. There's a more broad assignment. So when COVID occurred, the White House sent in a group called the US Digital Service into the CDC to help with issues that became highly visible. They were always there, but

Gerry Scullion (03:03.79)
They became more visible during COVID. And one of the things that the U.S. Digital Service did is set up a new division in the CDC called the Office of Public Health Data Surveillance and Technology. And one of the things this office is trying to do is to make or help the CDC be more quote unquote human centered. And as part of that, they wanted to hire, I think the goal is to hire 21 designer researchers and bring them in to help.

kind of change the way we operate. And so we're currently at eight, so I'm one of those eight, and we still need to hire more. But my specific assignment is the AI and machine learning and data interoperability, but we also do kind of broader level agency projects to kind of help change the culture. So what kind of things are they wanting to research? What kind of areas? Say the question again? What kind of areas are they looking to research further on?

at CDC, things like how do we improve the notifications of new cases of a particular disease? That was a big issue when COVID occurred. We didn't know, we didn't have real-time data of the counts of personal protective equipment.

people that are hospitalized, people that are dying. We just didn't have that. In fact, I don't know if you followed it in the United States, but we had actual volunteers. I think it was started by two people, maybe a journalist and a data scientist, but then it grew to hundreds of people. And these people were calling hospitals every day. They were watching the news in different municipalities and localities every day. They were compiling these numbers and publishing it every day to the point

where even the White House, president of United States was using the numbers coming from this volunteer group, not from the CDC, who should have been putting this information out. so it took about a year before CDC finally started putting information out and they didn't announce it. But some of the members of the group saw it they got really excited. Okay, great. We can finally take a break. And then when they looked at the numbers, yeah, they looked at the numbers.

Gerry Scullion (05:22.114)
they didn't match their numbers. And so they had really high confidence in their numbers. So they said, we can't stop. We don't, we don't really have confidence yet in the CDC numbers. So they kept, they kept going for about another six months to the point where they felt they could let go and hand it over to the CDC. So, so a big thing of research is how do we redesign? This is one of the big projects. How do we redesign the way health data flows throughout the whole health ecosystem between hospitals, labs and clinics?

between the state, territorial, tribal, local government health departments and the federal government at the CDC level. Yeah. So there's two questions on that. What kind of blockers are you experiencing in wanting to share that data? And second of all, I'd love to understand how you're using visualization to try and create that alignment. So what kind of methods are you using to bring the data alive, so to speak? Yeah.

There's lots of blockers. I'll mention two, but I could go on. First is related to what I was talking about in terms of my specific assignment, data interoperability. There's just no common standard that everyone uses at every level in federal, state, local, at all kinds of institutions, private,

hospitals, clinics, et cetera, that they're just different kind of formats, different terminologies, different vocabularies, sometimes for the same thing. So there's this issue of interoperability. How do I convert what someone has given me into a format that my systems understand? So that's just a huge issue in healthcare in general. then two is this issue of, I don't know, privacy.

So what's really interesting about our system here in the United States is that

Gerry Scullion (07:18.282)
If you are a doctor, right, you're a medic in a hospital and someone has a disease or you detect that a patient has a particular disease that is on a list called like a list of reportable disease conditions. This is a list that your state government has created and by law you are required to report if someone has this.

This is part of your state government doing their public health work to consolidate, consolidate information and create situational awareness. Now the federal government, CDC level, we have a similar list. It's called a list of like notifiable diseases, but we say notifiable as opposed to reportable because you are not required to notify. The way our government works, there is no mandate. There's no authority. There's no requirement for states to send that information to us. Right.

we like it because then we can create a consolidated map of data to show where things are because it helps you to know what's going on on the state that's bordering you and what's going on in the state that's bordering you on the other side to better prepare for transmissions of communicable diseases, et cetera. But it's not required. So one is trying to make sure with this, what would you call, system of incentives that we can share the data that we need

But two, when they do share it, they have to de-identify it because we don't have the right, if they do share the data, to the personal PII, personally identifiable information or PHI, personal health information of these people. So it has to be anonymized or de-identified before we can even receive it. That's an extra level or extra layer of work. And so it just gets really quite complicated. So.

To even redesign the system where data is shared really, really well and really quickly, you know, imagine a doctor not just sharing it straight to the, to a state government, but even in a way that CDC can get access to it. It would require people to opt in emergency medical health record, software companies, hospital systems, et cetera. They need to opt in.

Gerry Scullion (09:38.538)
And it needs to be done in a way where people's privacy is preserved and protected. So it's, it's a, it's a pretty thorny problem just because there's so many different groups of people that are entities of their own and no one is beholden to anyone else. And so I would, I would call it, it's a, it's a level above service design. Although some people say we're doing service design. really is systems. There are multiple organizations, multiple services, multiple governments.

involved in this. it's, it's a systems approach that we're having to take. It sounds incredible. Like it sounds like from a design perspective, it sounds like the perfect kind of project for a lot of service designers who want to work at that kind of system level. you said, like when it comes to those kinds of projects, let's just talk about visualization for a few minutes. When you come in there, there was probably maybe you're the first, think you might be in the first or second higher.

in the CDC. When you introduced some of the human centered design tools or the service design tools to the conversation, how did those first conversations go about and how did you introduce those methods?

Yeah, I was one of the first, I think was one of the first two who was recruited to come over, but my arrival was delayed. So the other person arrived first and definitely did a lot of laying of the groundwork. I think the big thing is as designers, I don't always do this. So I'm working on this myself is learning how to be bilingual or multilingual. Sometimes

You go to places and you say touch points and interactions and service design and people just, it's like you're speaking Shakespeare or maybe, sorry, you might love Shakespeare and you understand Shakespeare, but it's like you're speaking another language, right? Absolutely. And so we have to learn how to like speak the language of the people. think of the private sector sometimes that means talking about the bump. Can you hear me?

Gerry Scullion (11:47.362)
Yeah, absolutely. I'm saying that you speak in the language of the people are designing for and the people who are working with. Yeah, yeah. Yeah. So in the private sector, sometimes it's about like, you know, profits or losses, you know, so income, you know, revenue expenses. But here, it's really about social impact because we're in the government. So can you can you say can you speak about how this affects the ability to save lives, how this affects the ability to protect people from health and

security incidents and threats, how you can reduce disease burden, how you can improve the flourishing of life, the quality of life, the number of years. Like, can you get to that level? And especially since COVID and George Floyd, health equities is a big, big issue. So can we speak about how we can do it equitably? Because it has not always been the forefront of the priority of the CDC. But now it's something that we talk about. In fact, we now have a framework

not a framework. don't know if that's the right word, but, and F and ethos or an ethos, D E I B diversity, equity, inclusion, and belonging with. there's a B and I don't think there's another government ministry or agency that even has the B. Some of them talk about the AI, but the D I B is really, really interesting. And that's tough because I was in, can I tell you a real quick story? So I have a project. Yeah. Okay. I have a project.

I had a project with the Office of Health Equity because I love equity. And so I got in and I wanted to know how I could help. You know, I'm here, I'm a new designer. Let me know if I can help with anything you're doing. And so this project was dealing with the social determinants of health. So there are these things that we say affect health more than what you think affects health. So the neighborhood and the built environment, number one. Number two, educational access and quality of education. Number three,

economic stability, number four, healthcare, access and quality. And, number five, the social and community connections, right? So your, your people group, your community, et cetera. So a lot of times you find inequity in those five areas can lead to inequity in health, right? Health outcomes. So, so, so if you really want to prevent, cause that's part of our title centers for disease.

Gerry Scullion (14:15.352)
control and prevention. And sometimes we focus more on the control part than the prevention part. But if you really want to prevent, you have to work on those social determinants of health. So we have this project with the Office of Health Equity that's focused on the connections between housing and lack of housing as well with health outcomes, especially mental health. So we're on this project and we had this session with community

members and we were doing a power mapping exercise. So this is this matrix, like a two by two matrix. I think on the Y axis, like the top was very powerful and the lower Y axis was not very powerful or weak. on the X axis on one side, it was super helpful, know, strongly helpful. And on the other side was opponent.

And the community was, they were mapping organizations on this based on how powerful the organization was and how helpful or how adversarial they were. And what was interesting is that CDC, the CDC was one of the organizations they map. And can you guess where they put us on the X axis from super helpful to super opposing or like an opponent? They put us all the way on the opposing side.

And so one, I thought to myself, this is amazing that they felt comfortable. Like some people wouldn't feel that they could be honest in front of people that they're partaking, but that they felt comfortable to do that. But then two, it started this conversation where there were some nonprofits, some charities there who receive money from the government. And they were like, well, wait a minute, wait a minute, but we get money from the government. We get money from the city. Who put this up? Why would you do that? They give us money. And so it started this conversation where

certain people had to be educated about the problematic nature of the government and how many people in the public have lost trust. And they are actually scared and they don't believe the government when they say certain things, even when they are helpful because of past experiences or histories. so making things like that visible is really, important. And that's not even getting to the point of data visualization, but even in this qualitative sense, raising that up.

Gerry Scullion (16:37.262)
to the level of visibility where we can see it on a map and then talk about it is really important because these dynamics can be hidden. And when they're hidden, we don't design services in a way that focus on that. Cause the first thing we have to do in that situation is build trust. If we don't build trust, we can't do anything with these communities. absolutely. mean, designing for trust is, is integral in nearly everything that I, I've been doing as a practitioner for over a decade as a service designer. Walk me through the mechanics of unpacking.

the sort of the blockers in the flow of trust to your stakeholders in that piece. Like what was holding that back? How did you find that out? And what was the approach is to try and sort of resolve those pieces.

Gerry Scullion (17:25.802)
Yeah, well, it's number one is just the history. So I think a lot of us in government, we try to work on systemic issues, really large issues without any consideration of the past. And one of the things that that taught me is we have to confront, we have to face, we have to deal with, we have to address the past in order to do systems work or service level work.

And so, yeah, we have a past where we've done experiments on people. We've taken DNA without people's permission. We've done experiments on people of African descent without anesthesia to figure out things in areas of gynecology and birth processes, et cetera. And they actually, we gained knowledge through that, but we harmed people.

it in that way because of various mythologies. black people don't feel as much pain, black people have a higher level of tolerance, etc. And those things still carry through to today. So there's some of that past historical stuff like that. But I could even talk about just things today where there are people who will go into a doctor and because some of those mythologies are there and they're seeing a doctor, primary care physician who is not of the same race as them or gender as them, and they will minimize

the patient's concern, but the patient knows like, I feel something in my body, something is wrong. And the doctor like, no, nothing's wrong. And they send them away. And sometimes that person may end up dying or passing, or the situation gets really worse and they have to go to an emergency room because it was allowed to persist because the doctor minimized that and didn't take it seriously, et cetera. there are even situations like that. So then when you come in and you say, Hey, it's really important that you take this vaccine.

people worry with the speed that the vaccine was created, where corners cut. I'm not sure I trust you because even in micro interactions with my doctor, I struggle. And with bigger interactions, I see that certain communities, certain populations, certain areas, rural versus urban are preferred when you're trying to handle public health. So I don't even know if this is for me or helpful for me. I just don't trust anything you say.

Gerry Scullion (19:44.44)
This is especially true even with our, what we call people who we call tribal nations is how we say, you might say First Nations in Canada, et cetera, our indigenous populations, big, big issues there of trust. And just even in their ways of being, like you have to establish relationships. We have to know one another before we can ever have an exchange of, or collaborative exchange.

That's the first thing is to build a relationship. But the problem is that anytime we want something, that's when we want to reach out. When we need to be constantly reaching out, building relationships that by the time you need something, we've already got that foundation ready to kind of work together. By the time there's a problem or an emergency, it's too late to build a foundation. So we need to do it. there are current things, present things, but there are also historical things as well.

Yeah. So lots of initiatives probably working on congruently at the same time within the CDC. Is that right? Yeah. Yeah. Yeah, for sure. I think, mean, I think the office of health equity is doing some really great work at the forefront of trying to say, how do we do this work? Because you can, you know, you can actually improve health. can save lives. You can protect people in ways that don't affect equity at all. Like pretty much keeps the status quo. You can actually

save lives and improve health in ways that worsen health equity, right? It's kind of the way like, I'm going to introduce a new technology that helps education in the classrooms, right? And so sometimes you feel like, okay, this technology is a game changer and now it's going to make things more equitable. But the problem is now you've increased the difference between people who have access to the technology just created.

And people who don't have access. Now the capability gap is even greater because now the people who do have access can do even more because of the technology you've introduced. And so there's just even a bigger difference. So sometimes there's this even just non-technical, non-technocentric, non-technosolutionist things to do first to set the stage so that technology can be received in equitable ways. How did you find your way into service design? I'd love to peel back the years.

Gerry Scullion (22:13.73)
on your journey to that point. Cause I know you mentioned NASA at the start, like you've worked in lots of different agencies over the years, but I'd to go back to that point of, know, why you felt design was your calling, so to speak. Cause it sounds like something like it's very native to you. Like it's natural. It's not coming from a place in your head. It seems to be coming from a place in your heart. I can hear it when you're speaking. love that. Gosh. I want you to follow me around and just say that to

to people. I love that. I hope it is. I hope it is. Yeah. mean, it's so interesting to hear you say that because I'm part of a group of people that we talk about something called pluriversal design. And by that, I think we mean that there's a universal world order, you know, set forth by the West, me.

through academia and the university, that, you know, defines certain things. This is what design means. This is what research means. This is what these different categories mean. And we set up departments and disciplines and there are bounds within the discipline and things that you can do. And we define what rigor is and et cetera, et cetera. And so there is kind of one central understanding, one universalist understanding. And in pluriversality, you say, no, there isn't just a one world world or worlds with one center.

We are a world of many worlds or world with many centers so that the very definition of design or research or any of these topics changes depending on the world that you're in, the world you have. So it's funny thinking about now because I, know, for me, everyone is a designer. and sometimes, you know, it's interesting. Designers will throw the word design after everything, business design, policy design, org design, et cetera, in a way.

not to elevate people who have already been doing that, but to say, hey, policy maker, I know how to do this, maybe better than you. And I use these design methodologies to do it. So I'm going to call my thing policy design. But kind of when I, when I, when I try to say that everyone is doing design, I'm, actually trying to elevate what other people are doing. I'm not saying you have to use what is called in a universal sense, a design methodology. I'm saying,

Gerry Scullion (24:42.06)
Whether you use that or not, you policymaker, you are designing, you are shaping and forming something that will affect us and our environment. You're designing policy, you're designing the business, you're designing a strategy, you're designing an organization, et cetera, et cetera. So I love what you said because I didn't think about this when I was a kid growing up, but lately over the past five years, I've realized that, you know what? My parents were pretty creative people. They were designers. know, my mother is...

She's a, she, she never did this as her livelihood way of making money, but she designs beautiful clothes. And I would say to her, Hey, Hey, mom, I want to have pants like MC Hammer. MC Hammer was this rapper, when I was a, yeah. Just for your listeners, some of you are young. This is the first on the podcast. Let's go. Let's hit this. Yeah.

can't touch this is one of his big songs. Anyway, he, he, he was this, he was this rapper. He was a clean, he, didn't use a foul language. He was a great dancer and he had these things that some people call parachute pants, but you know, pants that where the, leg, the leg, the, the leggings kind of balloon out left to right around the leg. And, my mother, my mother would just go and say, okay. And then she sew it. So she had a sewing machine and she figured it out and then make stuff. So I had a lot of clothes that were just made by her.

people ask, where did you get that? my mother made, she's a beautiful designer, you know, and my father is a design, also designer, but in terms of art, visual art, which a lot of people contrast, art and craft and design, but he was able to create things visually. And he had an ability and I always wondered what his life would have been like if he could have pursued that. But I was always amazed at how he could see things and do that. So anyway, I think I think of them as designers.

So I guess maybe it was always in me. started in engineering. I started.

Gerry Scullion (26:48.49)
We called it design, but it was designed without any kind of human factors or consideration of human needs, just technical feasibility design. So I didn't study any of that human part in school. I learned it on the job. I learned it by grabbing. I think, you know, it might've been when the Gates Foundation back in 07 paid IDEO to create the first human, well, not the first, but...

the framework. think at the time, the biggest, most popularized human centered design toolkit. And their hope was like, this is the, this is going to be it. This is the magic that we need. And it will solve all the problems in international development, specifically global health and global education, which the Gates Foundation works. Of course it didn't do that, but it was something that I was able to grab, bring it to my work and just use it as I was going. But the, the, thing that I noticed to answer your question is about

You know, you do visual design of icons and fonts and symbols and images, but then sometimes you're trying to affect more than what you're able to within that confines. then you might move up to the industrial design of objects that might include fonts and images as well. But sometimes you want to do more of this. And then you're doing the interaction design of experiences, which might have some objects and some fonts and images, but sometimes you're limited in what it can do. so.

It was this movement from that to services because sometimes.

Gerry Scullion (28:19.906)
The biggest problem in a service landscape isn't at the point of the product, the interaction that I was designing. It was somewhere else. And so I don't mind doing visual design or product or interaction design if it's informed by a service landscape view that says, the biggest opportunity for improvement, the biggest pain is at this point. And that's why we have you doing this. But sometimes we would make really pretty websites.

And it didn't really do anything socially. Now it doesn't have to in the private sector, but remember I'm in the public sector. Like the reason we create products is for some social impact to get more people housed in homes, to get more kids out of foster care, to, to help improve the nutrition of certain mothers. And so sometimes we don't realize, or maybe we do realize, I don't know that the technology we're designing isn't going to do that in and of itself.

And we need some things around it before it after it, et cetera, to kind of round it out. Or maybe this is, that's just not the most important thing. So for me, without going through all the steps, it's been a slow general process from, from the engineering, technical feasibility design. And then even when I brought in human factors, was doing learning design, which involved some visual design and content strategy to moving into interaction design, to ultimately moving to service and systems, in terms of really getting to the,

fundamental thing that has to change for the social impact to be there. You mentioned about, working at the community level. I want to understand a little bit more in your background. Like were you born in the States? I know your parents are Nigerian. and you identify you've got dual citizenship for both countries. Did you, were you weird in America or weird in Nigeria? In the, in the States. I grew up in the States. Born in the States. Yeah.

Yeah, in Texas. I'd love to ask you about your perspective of having parents from a different country where you're a reared. You're native, you're born in America, born and bred as Bruce Springsteen would say. You've got two Nigerian parents who see the world through two different lenses, the Nigerian lens and the American lens. They see the land potentially of opportunity. What did that give you?

Gerry Scullion (30:44.662)
as a change maker, the fact that both your parents were in that situation and you as a child, we're seeing things probably a little bit differently. So there's lots of different lenses happening within the house. I'd love to understand what power that gives you as an individual and also as a change maker. Yeah, there's a multilingualism. And I don't mean that in terms of actual language of words, but I mean of moving through the world.

Do you, are you familiar? Have you heard that term, the term third culture kids? don't know if you've heard that. have, lived in Australia and I researched indigenous communities and other communities who are exactly what I would have painted in terms of your scenario. But I never had the opportunity to have someone on the podcast to ask them that specific question of having two parents from another country in America and so forth. So third culture.

maybe explain it to our listeners because it's an interesting perspective. Yeah, I remember I was talking about this with someone and they're like, I don't get it. Where's the third culture? Isn't it just your parents and yourself? And you're like, well, yeah, it's your parents are from one place. You're in a different place with your parents, in this case, the United States. And then you are this third culture because you retain parts from your country of origin.

You know, I know we know our language, food, our, we have clothes, customs, et cetera, but you're living in another place and you're growing up there. So you have that as part of you too, but you're not fully, you don't, you don't fully feel one or fully feel the other, or sometimes you might feel on the outside of both. So it is kind of like a hybrid. There's a hybridity there, a third space that you kind of occupy. Your third culture.

Yeah, my perspective, it's the homes when you walk in like your parents cooking Nigerian food and you're like, suddenly I'm no longer in what next door was born American, American, Native American, whatever. So tell me what that gives you growing up in that space. Did you grow up in Washington? Texas, think you said? No, in Houston, Texas. Yeah. Houston, Texas. Yeah. No, it's it's really interesting because the US acts adds an extra element, right? Because

Gerry Scullion (33:10.176)
I'm this third culture kid, but in the US, I look like what people call African Americans. Then I'm treated like what people call African Americans, which you could say I am, but I would say, I usually say that I'm Nigerian American where I actually know where my people come from, the language, the customs, et cetera, et cetera. Right. Where as a lot of African Americans don't. So sometimes I'm.

with African-American community groups and they'll say things that I don't understand because, know, we don't eat, we don't have that kind of food or we don't, we don't know that. Cause I'm, I come from, we're different people in my home when I'm at home with my parents or with other Nigerian immigrants. Right. So it's this, it's this ability. Okay. Can I move in with this group and understand and speak the way they, they speak and understand how they move and then move in. then, then because I grew up in the States and

have similar experience of being treated the same as other African Americans, then there is a bond there. There's a connection there. There's a shared experience there that brings us together. But you know, I remember they would talk about things like there's a food called chitlins, which I think if you were to say it fully sounded out, it's chitterlings, but we call it chitlins, which are pig intestines, which is a

a common food in the South and African American communities, but I had no idea what those were. And I hear people talk about time and I would pretend, yeah, yeah, chitlins, chitlins. But I didn't know because it just wasn't part of our makeup. then it meant that they were also to bring in a lot of my friends who not Nigerian, but wanted to learn about my roots. And so I'd bring them to my house and they helped make food with us and kind of learn about that. But that ability of

it may be in a, in a forced perspective, you might see it as code switching, but the ability of being malleable of saying, can I come into a space, see how the people are presenting themselves? And then can I then respond to that? It's like my kids, you know, I speak Spanish to my kids. They go to a Spanish English dual language school. And one of the things I try to tell them is like, Hey,

Gerry Scullion (35:33.686)
when someone speaks to you in Spanish, you probably want to respond to them in Spanish. Because right now their mode is by geography. if I'm at home, I just do English. And I'm speaking to them, I only speak to them in Spanish, but they respond in English. And they're like, but if I'm at school, you know, and I'm in, it's the Spanish day, or I'm with my Spanish teachers, because 50 % instruction is Spanish, 50 % English, then I I respond in Spanish.

But if I'm so they do it by location, I'm like, well, no, want to do it by. So if you're at, if we're at the house and someone comes and they only speak Spanish, you want to respond back to them in Spanish. But it's that ability of like saying, can I, can I see what is the language of movement and being and doing here in this place with these people? And can I respond in a way that hopefully they can understand? So to me, I feel like it's given me an ability to, to learn how to speak. And I don't mean speak when I say speak, but learn how to.

to respond and communicate with people in a way that they understand. Can I come into a place where even, and I've done this with places where I don't even speak the language, I've traveled around the world and can I start and do a community project with them side by side, shoulder to shoulder, working in the garden in ways that they understand, kind of following their rhythms, et cetera, et cetera. So I think it's been super helpful for me. It's super effective how I practice design. Like I practice participatory design.

But I think that's come out of the way that I grew up and watching my community and being a part of it. Yeah. You got there before me. was about to say speak and respond is a nice segue into participatory design. you know, if you were to, we'll talk about participatory design in a second, based on what we've just spoken about, would it be fair to say that that's one of your superpowers? The fact that you've got this third culture, this third perspective that if you

Paint the picture of two people, two parents born into a family that's all kind of American if you want. They all grew up there. They all have the same perspectives, the same suburbs where they grew up versus what you've got is you've got this ability to draw on your parents' journey and your own journey and then that third culture journey. Is that one of your superpowers as a designer?

Gerry Scullion (37:55.682)
Yeah. I always feel weird talking about superpowers. Self assessing my Superpowers is probably, yeah, like your ability to draw on something that not everyone else has. Yeah, yeah. I mean, yeah, I guess so, I, when I say I feel weird about it, I rather prefer people to tell me if I have a superpower as opposed to me saying, yeah, I have the superpower. a superpower. You know, cause I feel like other people can have a clearer view of myself than

I do of myself. So, but yeah, I think it's super amazing to have it. It's a, it's definitely a power. it's an advantage, especially if you're trying to do projects focused on trust or equity or things like that. for sure. Yeah. Yeah. So we were talking about, yeah, absolutely. But with the trust piece that you were talking about there and that power matrix and they play CDC way over and,

the side that you probably didn't want them to be on. But designing for trust, participatory design is a really nice approach. Maybe talk to me a little bit more around the benefits of participatory design. The sun is coming in here at the moment. It's that part of the day in Ireland. tell me a little bit more around what it gives you as a service designer, a change maker, participatory design, especially when you've got trust.

as one of the key values that you're trying to hit.

Yeah, participatory design means a lot of things to lot of people. Usually when I talk about it, I add a word, I'll say radical participatory design, just to signify something distinct. So I'm really saying that I'm not facilitating as the professional designer. I can facilitate, but it's, anyone can, like it rotates. So we do a lot of rotational co-facilitation. So the community,

Gerry Scullion (39:56.736)
is facilitating their leading, right? They're making choices. It's not me. And they are always participating. So as opposed to like, we do a session with the community, then we go back and we debrief and we plan the next thing. Then we come back and do a session with the community and we go away and we debrief and we plan next. They are on the team full time. So there's no phone calls or meetings or planning or evaluation or debrief apart from them because they are full-fledged members of the team.

I mean something more like that. So the word radical is, is, is to signify that this is to the root. It is complete. The participation is all the way, not just in activities, not just in phases, even in decision-making in leadership and facilitation, So one of the things it does is when you, terms of trust, it's no longer an issue of do people trust me? It does the commute cause I'm not leading. It's does the community trust one another.

it's no longer an issue of do they trust me to do the right thing, to implement what they say? No, because it's the community, deciding what we implemented kind of moving forward. really the only thing for me to do, which is hard and does involve trust is letting go. If I'm doing a project, representing an organization, if I'm doing a project representing the government, are we willing to let go? Are we willing to say, Hey, whatever this community comes up with, we're actually going to do.

Are we going to release this money and let them do whatever they're to do with the money? And that's hard. It's very hard for people. And I've seen, and I've been a part of projects where when you get to the point of something, a prototype being created and now it's time to implement it. The, my organization comes, no, no, no, sorry. You thought we had given up power, but now we actually don't like what you chose to create. we're not going to do that. You know, so, so there is trust involved, but.

Participatory design for me in the way that I practice it also means in terms of trust that we sometimes don't do the project. We might say, because the community has leadership that we are not at this point, trust is not high enough for us to move forward. So we're going to pause. Cause normally if it's not truly, truly participatory in the way that I'm talking about it, what happens is that the community members don't want to participate because there's not enough trust. Okay. We get it. That's fine. But we're to go ahead and do it anyway, cause we have a deadline and we're

Gerry Scullion (42:13.688)
So the project does move forward just without them or community doesn't trust us because we're not willing to slow down because often community members have jobs, maybe more than one job, maybe no jobs, but they're looking for a job. And we're just rushing, rushing, rushing because of our deadline and because of rushing, we're not moving at a pace that allows them to be fully involved. So it erodes the trust. but.

When I'm doing participatory design, we actually move at the pace of community, which relates to trust because now they trust the process more since they're always there and we're not going ahead until people are available. so community work, participatory work is slower. It's definitely slower. But that fits, I think it fits better with certain communities depending on where they're from, ways of being. Like the sense of urgency is definitely much more of a Western

business capitalists. Yeah. Absolutely. Yeah. Can I talk to you about, you saying like the trust wasn't there, like if there was trust, not between two stakeholders or two people who part of the team and you were not going to be able to do it. say no to it. How do you, what methods do you use to kind of measure where trust is currently sitting? So you know where, that piece is at.

I'm not looking for like, we use a McKinsey framework that helps measure trust. I'm not looking for anything like that, just as any of the listeners are throwing their eyes up to heaven. I'm just interested to see, is there any kind of processes that you might be able to share around gauging that trust so you know when to move ahead and maybe when to pull back based on your own experience? Cause it's a really important piece. So there's a.

There's a, I mean, you could call it a, I don't know if methodology is the right word or metamethodology, but there's a practice that we have, that I've practiced with some communities called relational design. Now, again, relational design is one of those terms that people use in many, many different ways. So when I say it, I really just mean design as relationship building. So if you come into a relational design process,

Gerry Scullion (44:31.658)
And you're professional designer, you probably wouldn't recognize it as a design methodology because it's just relationship building. We're doing things where we come together and we build relationships. There's different ways you could do that. So one of the ones I've been doing lately is called sustained dialogue. You get, meet in groups of 10 to 12 people. And we have a dialogue where we it's sustained in the fact that we agree that no matter what happens, no matter who does what to whom, we agree that we will always meet at the same time every week for a year or,

hover long. And then we began to know each other. We began to, hopefully, if it works well, build healthy relationships. And so the whole purpose of the healthy relationships is that if you have healthy relationships, usually resources flow inside of a healthy relationship. So if my brother is struggling and needs some help with money because he's been struggling to find a job, I will help him.

because we have a relationship and I have resources and, and he needs help and we're connected. And that's just a normal part as opposed to a transactional thing where like, I don't know, but somebody over there needs help. So I'm just going to donate money to this charity, which is fine that exists, but in, in transactional kind of charity, the giver walks away feeling really good. The receiver walks away feeling really good, but there's no relationship that's ever formed. So oftentimes what happens is that structurally the receiver has to continue to

requests more things in the future. When you have a relationship where you're in community with people, then anytime somebody happens to be at this moment struggling, because you're in community, we don't have to set up a GoFundMe page or things like the community comes in and we just, we kind of take care of each other because we're in community. Usually in my work as a social worker, and I've worked as a social worker in the past, I'm not currently doing it now.

vast majority of the people I work with are isolated. As when I've done trauma and crisis, health trauma and crisis counseling, and I've also done a lot of many years of work in services for people experiencing homelessness, they're isolated, they might have family, they might have friends, but they're strange. Because usually, if I ask a group of people, hey, if I take away your job, your money, your home, how fast would you how long would it take to find food? And they'll say a few hours, how long would it take you to find a place to sleep?

Gerry Scullion (47:00.142)
indoors. And the groups, the privileged groups that I talked to will say, by that I could find a place to sleep by the night. How long would it take you to find a job? some number of months. And I asked why and they said, because my auntie, my sister, my friend, cousin, they have this kind of social network. So, so sometimes when we do this participatory work, it doesn't even look like what we call design, we're just doing relationship building, but design or what we normally think of as traditional design.

is an emergent quality of relationship building. Because we learn things about each other. like, hey, seems like a number of us in this group are dealing with it. Why don't we work? Why don't we? Hey, I got this idea. Why don't like it just comes out. Design ends up coming out of these. It's an emergent quality of relationality. Yeah, these networks, right. So it emerges and didn't

happen in the same way, like we went out and did research, but we actually know everything about each other without having done the extractive transactional research because we're growing a vulnerable, healthy relationship, et cetera, et cetera. I say all that as a precursor to answer your question that one of the questions we ask when we're doing the participatory thing, which I think relates to trust is this. One, have a majority of the people engaged in this process, have a majority of the

participatory design and research members experienced a sustainable and sustained, to this day, shift in power. I have a majority of the design and research team members experienced a sustainable and sustained shift in power. When we're doing the relational one, we ask this question, further question, has there been an increase in the number of healthy, vulnerable relationships?

between people or has there been an increase in the quality, the depth of relationships across difference? Because usually when we do relational design, it's across different demographic differences where people may not be connecting otherwise. So that's kind what we're looking at. And then we also look at how well, I know we've created this little micro environment.

Gerry Scullion (49:14.488)
But does it extend once we were not in our design sessions or our relationship building sessions as we go out into the world, does it extend out there in the world when we see each other? Is it beginning to carry out carry over and spill over? So we asked, we asked those are some questions that we asked that I think do relate to trust and trust is being built. Yeah. I absolutely love some of these, these pieces that you're working on and sharing with us because I know people will be listening, bobbing, kind of saying, this is awesome. Taking notes of this stuff. So this is, this is good.

Victor, if you had to think about your work as a catalog, which piece or which project to date do you feel most proud of and what was behind those pieces of work? Because I know you mentioned NASA there before and you've done, you've got Justice by Design, which is your own piece. What's the bit that, you know, if you're to look back and you're sitting in a rocking chair when you're in your

60s or 70s with a coffee, which bits would you look back fondly on? And what was it about those projects that you might look fondly on in retrospect?

Gerry Scullion (50:28.046)
Give me one second. I just want to make sure I'm sending a note to my next meeting. No worries. So the question is, which ones do feel most proud about that I would look back on? So far, yeah, in your career. What was it about? What were the attributes of that project that made you kind of sit back and go, yeah, I'm proud of that already.

something that you could share, a key learning that you found from your work to date.

You know, maybe it might be my first, the first time that I was able to do participatory design and the way that I talk about it from the perspective of a designer in a company. So I'm working for a company and I go out and I'm doing participatory design. It's a project that I've talked about in different places, but it was my first one where I was working for a company and it was a multinational, was an international project.

focused on digital literacy and

We were starting the project in a place in North Central India. And it involved, you know, definitely all the components of technology software design. So UX, UI, visual graphic, content strategy, information architecture, but it was, there was business designs, service design, learning design, communication design, all these different components. Cause it was a whole learning program with partners and facilitators.

Gerry Scullion (52:06.604)
around the world that we were using to kind of improve the level of digital literacy of people around the world. But we started creating the first model in central North India, and then we would move to other locations. And I think what was interesting is that that was one of the first times that I was able to, we were, we were able to mix asset based design or strengths based design, you might say, with more of this traditional Western based

problem-based, need-based, deficit-based design. So we were mixing the two. And I think the thing that I learned, or I learned a lot of things, but one of the things that I learned that still sits with me today is that when I look at what the team created, like we did a thing, I think a lot of designers at the UI, UX level and service design level, they kind of tend to create a prototype and then they iterate on it. But I think when you're doing visual design, it's still very common to create multiple.

multiple things to say, Hey, what do think about this one? Or what do you think about this one before you, you narrow in on one? So we, did that even though we were doing service design, we, had three different, we broke the team up into three groups and we had three different kind of quote unquote solutions for digital literacy. And then we kind of evaluated them and we take components of the one of each one that we like kind of merged eventually. But when you looked at everything that they first prototype, including the final merged, prototype and then pilot, cetera.

Gerry Scullion (53:37.738)
It completely came out of the asset-based components of our work. So you could have taken the entire interview-based research that we did and just thrown it out. And this wasn't planned. This wasn't anything. I just thought it was interesting when I think back about it. But everything that they created came out of... One of the methodologies we used was called positive deviance. So positive deviance is like...

If I say, Hey, Jerry, I have this problem in my hospital. run this hospital and a lot of the staff are getting sick. Can you, with your great expertise, come in and help figure out a solution, know, research what's going on and design some solutions to improve. And then you come Jerry and you say something like, well, I know I'm supposed to have all the expertise, but what if, I don't know. What if the expertise is already here? Is there any percentage of your staff that rarely gets sick? Can I say? Yeah, I mean, it's small. It's about 2 % of them. Yeah. Can I just.

Spend some time with them. So I'm fine. So you go spend some time with them and you notice what they do. And then you, you come and then all you do is focus on propagating the inherent wisdom that was already there in the community. Cause somehow there's a communication gap where what they're doing is not traveling. So all you do is help them propagating that other people like, Hey, these you're already doing it, but it's not, these not everyone knows about how it's been done. So yeah. So this, this positive, you're looking for.

deviants in the community, people who are part of the same population, but because of some, they have deviant outcomes or maybe deviant behavior that leads to deviant outcomes, right? So we did that. Like we looked at like really cool digital literacy things that were working really well. They weren't necessarily spreading everywhere, but they were working well. And everything that they created a prototype, I think was built upon that. It was really interesting that there were,

In other words, there's a natural gravitation. I have noticed this over the years, but that was my first time noticing that. There's a natural gravitation when working with communities to gravitate towards asset-based methodologies. Like I think people like to define themselves by what they have, not by what they lack. And that's just something interesting that I kind of noticed. It's like, it's really interesting. And I think back then, I didn't even know, I know now, but back then I didn't realize that positive deviance

Gerry Scullion (55:59.562)
is its own, it's its own like method. You could just do a positive deviance project. I thought of it because this happens in design. We'll take things from here and there and we'll just introduce it as a method. I thought of it as a method, but it's a whole methodology. And I learned that, yeah, people tend to gravitate, communities, non-professional designer communities gravitate towards asset-based things. Absolutely. No, it's a really nice case study and a nice item to share.

Victor, you've got so many things on the go, but I know people will definitely have questions. and maybe they want to follow your journey. Like I have, hopefully they're not gonna sit at the side of the front of your apartment in a car like I was. Ha ha ha ha. Gosh, need security. Exactly. Well, what's the best way for people to reach out to you and stay in touch?

they can always email me, but I'm, I'm slower with email. I don't mind being slow, but sometimes that doesn't fit with, our, fast pace culture. Yeah. So I think the easy way is, to contact me through LinkedIn. can send me a message. If, if you, if you send me a connection request using the mobile app, it doesn't allow you to leave a note. And if I don't know someone I'm trying to be better with Facebook, with LinkedIn, if I don't know people, I'm trying to not accept.

But I do accept if I don't know someone and they introduce themselves. So leave a note, use the web app, so on a laptop or something, because the mobile app doesn't let you leave a But send me a note, connection request, add a note, and then we can connect that way. Or you can email me as well. I'll put it in the show. It's all the stuff from when the show that's.

You put it in. do I need to say it? Are you just going to put it in? I'll put I'll put Victor's email into the show notes. So if you're watching this on YouTube, it's in the description. If you were listening on Spotify or Apple, it's in the it's in the description box and the show notes. Perfect. Victor, as Rachel said, you are a legend. I absolutely loved speaking with you today. And I like to wrap up every conversation that I have in this podcast because we don't script.

Gerry Scullion (58:16.62)
Okay. We don't do questions upfront, any of kind of stuff. And this is ACD. So there is a level of vulnerability where you have to be comfortable with. So I really appreciate you giving me that time and energy and being vulnerable enough to allow me to answer or ask any question that really feels natural in the moment. So thanks so much for your time and your vulnerability. Yeah. Thanks for having me. I really enjoyed the conversation. And I look forward to seeing how it turns out. Yeah, absolutely.