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Bias-aware UX Research in Healthcare

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Tina Ličková Tina Ličková
•  15.09.2023
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James McKinnon is an accomplished Service Design and Innovation Consultant and the founder of “You. Me. Us. We.,” a user experience research agency focused on shaping the future of healthcare through innovation and equitable care delivery.

Welcome to the ninth episode of UX Research Geeks, a podcast delving into the world of user experience research. This episode marks the beginning of our special digital healthcare series, featuring James, an expert in the field. Join us as we explore topics like inclusive research, adapting to pandemic challenges, and the intriguing concept of the “fear of finding out.”

Episode highlights

00:06:02 – Vulnerable Populations in Healthcare
00:13:15 – Research During COVID-19
00:26:56 – Addressing Bias in Healthcare
00:33:56 – Chronic Kidney Disease (CKD) Project
00:38:32 – Fear of Finding Out in Healthcare
00:42:37 – Best Practices for Digital Health and Inclusivity
00:45:32 – Connecting with James Mckinnon

About our guest James Mckinnon

James McKinnon is an accomplished Service Design and Innovation Consultant, who is also the founder of “You. Me. Us. We.,” a user experience research agency with a primary focus on the future of healthcare, the influence of technology on health, equitable outcomes, and people-centric approaches to care delivery.With a decade of experience leading product, UX research, and R&D teams in launching new businesses, products, and services, James has become a prominent figure in the field. Over the last five years, he has honed his expertise in developing innovative business services for healthcare organizations and citizens, playing a pivotal role in transforming healthcare and implementing groundbreaking solutions. James is a passionate advocate for digital healthcare literacy, patient empowerment, and fostering innovation within the healthcare sector. His creative vision and dedication continue to drive improvements in healthcare delivery processes. You can contact James on LinkedIn or through the agency’s website.

But the reality of it is that this is inherently a human thing. We will never get over our personal biases because we have personal experiences.

James Mckinnon, Human-technologist and human-centered researcher in digital health
James Mckinnon, Human-technologist and human-centered researcher in digital health


Podcast transcript

[00:00:00] Tina Ličková:

Hello and welcome to UX Research Geeks. I’m your host Tina Ličková, a researcher and a strategist, and this podcast is brought to you by UXtweak, an all-in-one UX research tool.

This is the ninth episode of UX Research Geeks. And it’s also the first part of the digital healthcare special, where we invited four beautiful guests, true experts on this topic, which you will have a chance to listen to in the next two months. As the first guest in this series we spoke to James, a human technologist and a human centered researcher.

His works explore areas where businesses, technology, and design merge together to impact digital services, people, and society. James´ studio work is driven by inclusive and equitable practices in care delivery, lowering barriers to access to novel life saving digital health services and tools.

In this episode we spoke about how to do inclusive and possibly bias aware research, how he did research in the times of Corona as well. What is the fear of finding out? If you want to find out more, tune in.

Hello, James.

[00:01:21] James Mckinnon: Hi, hello.

[00:01:24] Tina Ličková: Let’s start with the essential question, because you’re a very interesting person, so I would like to start with who are you and what are you actually doing?

[00:01:33] James Mckinnon: Okay I can give you a little bit of my background. So I’m a UX researcher and a service designer, and I lead a studio. I actually run an agency called: You. Me. Us. We., and it’s a Berlin based company. We operate in the EU, the UK and the US market. And, about me – I’ve been working in the field of digital, I would say working in the field of UX research and surface design for the past 12 years. So in my work, I’ve worked with digital health startups, pharmaceutical companies, community based care, and inpatient and outpatient settings in the US and primarily in the EU. And right now with You. Me. Us. We. We are working with different kinds of groups to explore inclusive, equitable, inequitable practices in care delivery, lowering barriers to access and novel and to explore novel life saving digital health solutions and tools.

So that’s what the working background is. But my personal background, I’m a, I’m an African American male from originally from Boston grew up all over the East coast and, went to art school, left art school and, study a little bit of cultural anthropology and, design research and really got my and really learned a lot about the, how people, the kind of behind the scenes about how products and services actually work.

And then I decided to move to Europe a few years ago where I’ve been working as a UX researcher and service designer.

[00:03:07] Tina Ličková: And how did it happen that you are now working in the field of digital health care?

[00:03:14] James Mckinnon: I would say I would call myself a human technologist. So I see user experience research and digital in service design as just tools.

They’re just tools that are being applied. But one of the things that kind of keeps me up at night are the questions around what happens when humans and technology meet how do people how are people’s reality changed and affected by new technologies that come into their daily lives, what happens when, people who can’t participate in this future fall through the cracks and these things have have led me to the digital health arena.

A good example is like food delivery. So just stepping out of digital health for one quick second and looking at full delivery as like a very simplified example it’s a high level of convenience, but in the end, someone pays the price when your ravioli arrives within 10 minutes or your zucchini arrives in 10 minutes.

The thing is that it gets a bit more trickier when you look at the digital health aspect, because with, and also with care delivery. Applying these kinds of new models and new technology to increase better care outcomes, the idea is that it’s not always clear where someone pays the price, and you have to look at it from a different set of perspectives, which makes it a bit more stickier and trickier.

So when, and so the thing is that through digital health, I work in a lot of disease specific topics and areas. So I look at things like challenges that both patients and healthcare providers are dealing with health in terms of how healthcare systems apply those types of rules. Looking at what type of barriers are there, how barriers can be lowered.

The goal is to either string together a series of products. sometimes create a new product or service, but the idea is that it’s about really lowering the barriers to deliver the right kind of care for the right kind, for the different kinds of people that are out there.

So what I would say is that it’s more about, identifying where people can potentially fall through the cracks. So when you bring surface design and user experience research together, and you look at it from a place where people fall through the cracks, oftentimes they can be the most vulnerable people.

So in our work, like we definitely see signs where there are, chronic diseases are, are out there, they’re silent killers, patients don’t even notice the kind of damage that’s being done until it’s too late. And usually what happens is that the outcomes can be worse for those who are most vulnerable.

So we’re looking at people of color. We’re looking at immigrants, elderly people, those who have a precarious socioeconomic status, and we look at how we can lower those barriers and reduce those negative outcomes for those groups of people.

[00:06:02] Tina Ličková: Mhm. Mhm. And I’m thinking because this topic comes out in many other fields it’s a social phenomenon, right?

And I’m thinking about if you could maybe teach us or tell us what is the current situation either in the US or in Europe. Why these groups are not so taking into account and what is actually how it’s in Reality, that the health care system isn’t really working for them.

[00:06:35] James Mckinnon: Yeah, I think that if we think in a way in which traditional care has been built, There are a few key factors.

So one key factor is In medical books, you only have the appearance of sometimes people of color, only when it comes down to things like STDs. So looking at things like skin care, or dermatology, or even just how certain kinds of diseases appear on people who have brown or dark or black skin it’s almost a guess.

For a healthcare provider on the other side of it is that when we look at traditional care models, we also look at things like noncompliant patients. In a lot of the work that I do, I see a lot of outcomes come out to, Hey, that patient was noncompliant or they just wanted to die. And the reality of it is that, that non compliance is, I don’t think people actually really want to die.

I don’t think people will go to a doctor and sit there and maybe be passive with the suggestion that’s being given to them and do nothing. I actually believe that the health care systems or the time that’s being spent with patients is too little. And there’s not enough support to actually be delivered to patients to look at what their socioeconomic problems are and help them in places where a doctor cannot.

So this is where it becomes a little bit more of a really struggling foundation there, and then when you apply certain approach like digital health solutions on top of a already crumbling system, you actually end up not seeing those vulnerable groups that are on the outside that are, oftentimes not a reflection of the team that’s actually building that product itself.

I would say in a lot of my experience, I go into digital health units, startups innovation labs, and to put it bluntly, I quickly noticed, that there are very few people that look like me, but the idea of being able to acknowledge the fact that people do fall through the cracks even before a solution can go public can also can actually mean the difference between an effective product in the market and not having a very effective product in the market.

So I think the idea is that when I come in, I talk about things like diversity, ethics and inclusion, and it makes people very uncomfortable actually makes me uncomfortable. Talking about it with a group, oftentimes in a situation where all of my stakeholders or all the partners around me don’t know how to begin with that discussion is, this is something that I see not only in the United States, I see it also in Europe as well.

And I invite them to explore it with me, to be very uncomfortable with me as we explore these areas. And it’s again, not just looking at the constraints of the patient, but also looking at the constraints of the care provider. So the person who’s providing care in that health care system. If you have a primary care physician that only averages 12 minutes per patient who maybe has type 2 diabetes and possibly chronic kidney disease, how can the illness be managed or that the underlying illnesses be managed within a short period of time?

It’s very complex and it’s not really a simple solution that can be applied. And so these things require a level of patience, they require a level of outward thinking, thinking in a completely different way, and also thinking about the kinds of people who struggle with these constraints.

[00:10:01] Tina Ličková: And going back, for example, because this is a really good example of the non compliant patient and that when we had our kickoff call, my attention if you maybe could tell what is a non compliant patient and what I’m interested in, because bringing this into the discussion is a big thing and I would be also interested, how do you bring news in like this to the audience of your clients who are not such a diverse crowd or maybe not also such an inclusive crowd?

[00:10:36] James Mckinnon: So non compliance is a very tricky thing. It could be a variety of definitions, so medical adherence, meaning that someone is not taking their medication on time.

Oftentimes, when we look deeper, it could be the fact that the person can’t afford that medicine or struggle to get to the pharmacy to fulfill that prescription. Not every healthcare system has available medicines that are free or subsidized by the state. So you’ll have different barriers that are there when it comes down to that level of compliance, but you also have things like misappointments.

Misappointments could mean no money for transportation. other priorities like raising children or also a little bit of fear going into the doctor’s office. So the thing is that when you, these are things that are unseen. They’re not easy to survey. They’re not really easy to quantify or in a single 30 minute discussion with a patient or one hour discussion with the patient.

It’s something that’s a little bit more deeper that you have to really look at how people navigate through an existing, I would say an existing, care journey. So what we do is we work a lot with identity, like planning out these care journeys and putting lots of different kinds of patients through them to show which ones are most likely to fall out.

How, what is the percentage? What is the likelihood of that based upon? Interviews with physicians, interviews with hospital administrators, interviews with patients themselves. And actually, there’s this one extra thing I want to throw in there. COVID came along a couple years ago, and it really rocked the UX research world.

It made it very hard for researchers to really go out into the field and really understand what was going on. We relied heavily on video calls. Already with that, it creates a barrier. So you may not be able to meet with that ideal patient primarily because they may not have access to, they may not be a participant in that pool that you’re pulling from.

It could be that they don’t even have access to a solid working internet infrastructure, which to be honest, we still, people all over the world are really still struggling with. Even in the Western world, we’re deeply struggling with that. And so, the thing is: you may not be able to clearly get to the kind of person or the kinds of people you may need in order to, I would say: Make that connection happen- to understand what’s going on in the market and understand the nuances that are there.

And I think that takes a lot more than just a couple of interviews. It takes a lot more observation, takes a lot more time spent.

[00:13:15] Tina Ličková: And how did you do it in the COVID times? How did you work on finding out what is the… I just started to watch the second series of New Amsterdam and okay, throwing away now that it’s a white dude trying to save the world, and he’s , which is probably not recommended, it shouldn’t be in this message of this TV show, and it’s just a collective bludger. But I just had this visual in my head, you being the, how can I help type of, but coming into the commercial space and asking your clients, and how can you help to find out these problems, and how did you do it, because, the barriers, Even for researcher in other topics where in Covid, quite yes. And here, it’s just as, as you named, there’s a lot of reason why it was hard.

How did you avoid it?

[00:14:07] James Mckinnon: Yeah. It was hard, actually. I think when we were first hit down with, we were first hit with the first lockdowns, we had to cancel all of our interviews. I think at this point in time we were focusing on the U. S. and the U. K. market for a particular product that was based in Germany, and we had to come up with a whole new game plan. I think that it was very surprising for everyone, but one of the things that we were, that I was exploring at the time was the delivery Of rapid testing, or I would say what we would call rapid testing at the very beginning of COVID, where someone would be, would suspect they have COVID, they would go into a test center, get a test, and be told the test results.

And one of the things, based upon obviously some of our past research, we knew that people really struggle in finding out the answer to a diagnosis. And at the very beginning stages of COVID, people were really struggling with being stigmatized, especially people of color, Asian people, elderly people even being told they may die from what they have.

So, again, this is early days. This is not now, it’s much different now. But one of the things that we did notice was the delivery of the diagnosis was done in a way that confused a lot of people, that for some groups that we were looking into could have pushed them to harm, to self harm if they had gotten a poor diagnosis.

So looking at the entire end to end approach to that, we had to look at those kinds of key signals and kind of key flags of where there could be potential misunderstanding or people running away with the wrong information. And what we did is, after we did some of, after we did, after we had some actual diagnosis is delivered, we were able to get interviews with some of the patients, obviously anonymously, some of the patient groups anonymously, and really chat to them about how the diagnosis was delivered, what their fears were, what their challenges were, these are things that we couldn’t normally see on that we couldn’t that we would be able to see more on the ground had we had more of a deeper connection with that particular patient, but we were struggling as well.

It really made it hard for us to really identify with where the barriers are, where are patients not wanting to hear based upon their age group and their socioeconomic status and their background, but gathering that amount of information really helped us understand more about that and to in a way, move towards it.

But we had to do it continuously. We couldn’t just do it with a few people. We had to keep on checking on the tool, keep on checking on the kinds, the way in which the diagnosis was delivered and so on. Now. As the pandemic is subsiding and things becoming more flexible, I really encourage researchers to go out there and really observe and meet the people that, that they’re, that will ultimately benefit from the product that they’re creating.

And I think that the important thing about it is that, yes, remote testing has become a good standard now. It’s totally changed the way we do research. But now that we’re in this new space, we have an obligation to really see the people that we’re working with. I would say that I have to be honest, I wasn’t completely 100 percent confident in the quality of the products that we were creating during the early days of the pandemic.

Things were quite slow. And after things changed where there were less restrictions, going back and reassessing based upon the people who were using it, the outcomes that were there, the data that was collected, helped us make, to help us enhance the products more down the line, which I think was really important.

So yeah I could say yeah, there’s no, there was no easy way with remote testing. Everyone had to do it. That was the only way you can have trust with your patients or I’m sorry, trust with the patient groups, but as things are changing now, I think it’s really important to really go out there and to really do the field work.

[00:18:18] Tina Ličková: And to really do the field work, what does it look like? I never had a chance to work in health care. And it’s such a, and you were talking, we were talking also about the diagnosis in which I have a question about that as well, maybe later on, but how do you do, because it’s very intimate, it’s your health, it’s your health data.

It’s not exactly the fun time of your life when you’re sick or trying to find out what kind of sickness you have. So how do you approach people even when interviewing or Being out there in the field? What does it mean? A lot of questions right now, I know.

Do you go to a hospital and just say: oh sir, could you please talk to me? What does it look like?

[00:19:06] James Mckinnon: Yeah. Luckily, I have got really good connections with different kinds of care settings so that allows me and the teams that I’m working with you know, it’s obviously small groups, usually there’s two or three of us and we wear lab coats and we will go into waiting rooms and observe. At times the patients will be told that there will be people observing. So they can comply with that, especially when we do observations inside of a consultation session. I think it comes down to really talking with different kinds of groups, it is oftentimes, I would say the, one of the more interesting accounts that I’ve had is when I’ve worked in hospitals that are in inner cities. Because hospitals in inner cities tend to attract a variety of people moving in and moving out almost like a train station. If you’ve ever sat for 20 minutes in a public hospital, not even in a waiting room, but in the lobby of a hospital, you see so many kinds of walks of life, so many walks of life coming in and out of that, of that setting. And we were, I remember we, we had launched this intervention that was a bit of a booth where we wanted to get a sense of the overall sentiment of people and some of their challenges as they were passing through parts of the hospital. We gave them a small incentive.

We told them: Hey, you know, we will not collect your name or any particular kind of data that would be used to identify you. But we want to be able to have a small conversation with you and explore a few topics. And in the end we would exchange their small time, which is always 15 minutes with either candy or Amazon voucher or some kind of incentive for them to stay engaged with us.

And oftentimes, you just heard really interesting stories where you can actually start taking groups and classifying them based upon the experience they just had or the experience they’re going to have in the hospital. And a lot of people are very open. I think the goal with these groups is always to move beyond the complaints and talk more to the experiential feelings that they may be having.

So in those settings, you deal with people who are elderly. You’re dealing with people who are a lot of people of color who are moving through that space. You’re dealing with people who have disabilities and maybe have various social economic statuses. And these are people that you’re never going to get in a user pool on an online user pool.

They’re just, you’re just not going to get them. But these kinds of people are the ones who can benefit the most from the kind of intervention that you can have. And so this is where we really I would say the, it’s tough, especially with building trust, especially when it comes down to shadowing in a clinical setting or shadowing in a consultation.

But there is a different kind of dimension there where you can find places where you can engage with. People and learn from them and learn about them.

[00:22:09] Tina Ličková: And maybe because this is, you mentioned it’s 15 minutes talking to them. And I can imagine that some people are sick and they want to somehow filter their emotions.

It’s the components you were talking about then there’s the shadowing, which we know an observed object behaves differently. And then you were mentioning the rules. So maybe the setup, the physical setup of how you do it is what I’m.

[00:22:36] James Mckinnon: Yeah, the physical setup is really attractive to people. I also think about coming up with novel ways to approach people.

We, even if it’s about creating a board game that outlines. a person’s journey of how they navigate from screening to a diagnosis. What are the things that they would put in? What are the things that they would change? How would they move along and how they would, how would they deal with different scenarios?

These are some tools that we’ve applied. When working with different kinds of patient groups, you’d be surprised that I’ve worked with patients who were I, and I would say a good example is I worked with a company that wanted to develop a diagnosis app and they were very interested in something called differential diagnosis.

So that is when you have. a comorbidity like hypertension, maybe obesity, or type 2 diabetes. Does the tool give you information when you’re, maybe when your foot hurts? Can it tell the difference between when something is just, you stubbed your toe or you’ve got a little bit of muscle pain, or when it’s something that’s more severe that’s related to your comorbidity. So how do we manage that? And we noticed that it would benefit people who were who were more, who knew a little bit less about their certain situation, but relied heavily on doctor’s advice. So what we were doing is, we were exploring how people who are between the ages of 65 all the way up to, I think we talked to someone who was 90 years old. And how does this group, how do they make decisions and how do they manage that kind of advice?

Not to say that we were delivering a diagnosis, but with that kind of advice, what are the things that they would like to know, when it comes down to managing and making decisions about whether they should go to see a doctor or if they go to see a doctor, how do they explain their complaints all the way down to: is it just me or is it something to do with my pre existing condition? So there is, there are a lot of different ways in which we can explore this kind of feedback by creating different kinds of simulations. And oftentimes they have to be offline. They have to be a bit analog in order to really bring those groups in.

[00:24:55] Tina Ličková: And I’m still amazed by the fact, because it might be that some people will be listening and they’re like 15 minutes with a person.

[00:25:08] James Mckinnon: 15 minutes is very short and obviously you can’t get a deep impression on one particular person within a 15 minute interview. But sometimes there are a few key questions that you can ask that can give you a little bit of an insight into their daily life or how they’re experiencing the current clinical setting and I think that is enough to start with.

It’s not the answer, but it’s enough to it’s not to pull a little bit of data to start with. The thing is that people in these settings are oftentimes very busy and they’re trying to move from one place to another. Sometimes people want to stay for 30 minutes. Sometimes they want to stay even longer, but I think 15 minutes is always a, for us, for that particular project was a good way to gauge a little bit of sentiment about that particular, about the, about that particular clinical space that we were working in.

[00:25:58] Tina Ličková: Mhm. I’m also a fan of doing a guerrilla because, when you have very powerful question, sometimes even one minute is enough to gather some insight or indication of what we should look more into. But it’s interesting that even this 15 minutes in such a big topic and healthcare topics makes such a difference.

When I’m thinking further about it, it’s it’s the question and I will use these, the argument of elderly generation: I’m colorblind, I don’t see race and which I know it’s coming from a good place, but it’s not exactly how we should look at things and but how do you make sure to work inclusively in some setups and to really look at the differences coming from the social and economic statuses from the racial biases that we all could have.

[00:26:56] James Mckinnon: Yeah. Bias, essentially that, that’s what it is. It’s exploring bias. Bias is real. Even if you’re on a product team, bias is there, you can’t it’s I’m trying to figure out how I can best explain this, but I think when it comes down to when it comes down to it, acknowledging the fact that there are biases and being, and actually I would say calculating for that level of error that would be inside of that, so what I always think is, It’s not about just spending that one off time with that group or those individuals that maybe would be a target focus patient, I’m sorry, a targeted patient group.

But spending more and more time with them, I think also in terms of managing bias, it’s also looking at diversity inside of teams. So not to say that all product teams have to be a match, a mix of every kind of person on the planet. That would be great. But when I’m what we do is we, what I do is I am always encouraged to drop a lot of expertise.

Oftentimes with expertise and having a lot of the same kinds of people in terms of the same mindset inside of product teams, you really struggle with biases. It may be, it’s always a good idea to have people from different walks of life connected to those teams, even if it means that every month, there’s always just a session with a new group of people that could potentially benefit from that product that are just very different from the people you’ve already spoke to, I think also and that the idea of really connecting to the, to product teams, I’m sorry, really connecting product teams, the outside real world, instead of, Being in a theoretical lab basis or setting can also be incredibly important.

So there are a lot of different factors there to get around bias, but the reality of it is that this is inherently a human thing. We will never really get over our personal biases because we have personal experiences, but to understand that they’re out there, to understand that you’re the product that you’re creating or that service you’re creating could be biased.

Or the kind of group of the kind of groups that you decide not to include in your testing or to not include in your early discovery work that could be a bias. So it’s hard. It takes time. And I think that with product teams, it’s, yeah, there’s this McDonald, I would call it the- I’m sorry, I don’t want to – I wanna call it the fast foodization of product development where there is a set of rules. People adapt product development to these kinds of parameters and rules, and they come out with an MVP, but with digital health, it’s far more complex than that and much more time needs to be spent.

And checking in one with one’s own personal biases is incredibly important.

[00:29:52] Tina Ličková: I’m also curious, you have a client, you are in a very complex area which affects people’s life. If we don’t work exclusively in an IT project, I don’t think it’s going to cause such harm as in healthcare.

And then you have clients when, which you described, the teams might not be so diverse. And how do clients take the information or how do they respond to you coming and telling them you have bias. Let’s work on your bias.

[00:30:31] James Mckinnon: I would love to say that I don’t work with clients that don’t agree that diversity and inclusion are key to our key principles to product development.

I would say I would love to say that, but that’s not true. I’ve had some hard nuts to crack, especially with dealing with high level stakeholders. Who really struggled to understand why it would make sense to either open up a scope of a project or open up the kinds of, or to actually look in a group that maybe they would feel would be too small.

I can definitely say that the African American population in the United States is made up of only, it’s around 20%, give or take, of the U. S. population. I would say it would be smaller in other Western European countries as well. But when you start adding that to the growing Latin American population when you start seeing it growing to the growing Asian population.

It does, those numbers really do show there’s a potential to look at things a little bit differently. So one, one great example that I have, so I talked about dermatology Dermatology is a really interesting arena. Right now, you see a lot of books that are on dermatology that give one side of a story.

We have examples of very pale skin. So when a dermatologist is working with a person of color, they really struggle to identify what that skin condition is. And I always bring up great examples. I always bring good, solid examples into the room. In the UK, I think it was in 2020, there was a medical student called Malone Mukwinde and he founded a tool called blackandbrownskin.co.uk and it’s a product that showcases clinical skin conditions and clinton skin diseases and black and brown skin. And it also helps patients navigate towards dermatologists who specialize in darker skin. So the idea is that in a way it helps medical students see the different kinds of patterns, different kinds of lesions and moles, different kinds of skin conditions that can appear in people of color that normally would go unnoticed, but also helps those who are in need actually find a way to care. And I think that when I bring these things together, I talk about, it’s not just about the fact that it’s about helping out the smallest group of people who may be unseen, but there is, there are opportunities to monetize within those areas as well. And I think that working with those kind of constraints are, create a far more interesting and robust tool that relates to the idea that, you know, of what, of the promise of digital health and also its ability to scale more so than going for a skincare tool that or a skin health tool that only focuses on existing photos from a medical textbook.

So that’s the thing. It’s really bringing those in and saying, hey, these are the other ways in which we can help more people. These are the ways in which we can also still monetize and scale with that as well. But it can only be done if we start looking at the world a little bit differently.

[00:33:41] Tina Ličková: And you are now working also, as you mentioned briefly, on a project that is looking into a specific kidney disease, which is also really hard to diagnose, as I understood. Can you maybe explain a little bit more?

[00:33:56] James Mckinnon: Yeah. So I am working on a project that’s focusing on chronic kidney disease.

It’s a very big topic now in the United States. It’s actually a really big topic globally. Primarily because it’s a silent killer, it doesn’t have these kinds of symptoms. that you would normally see with others, with some chronic illnesses. It’s something that is preventable, and with early intervention, is maintainable. It doesn’t necessarily have to lead to dialysis.

But one of the things that we do see with CKD is that the diagnosis is done too late. A patient who is, You know, who feels healthy, who, is doing their, is living their life, moves to another state, goes in for an exam when they meet a new doctor, and the doctor says you may have, you have a high level of chronic kidney disease, you may need dialysis at some point in time soon.

This can be a shocker. This can be devastating to people. So it’s tough. And the idea is that. If people, if we’re looking at it, we’re saying something like nine out of nine out of 10 people in the United States with chronic kidney disease don’t even know that they have it. So it’s often deprioritized.

And with that, we also see that there are vulnerable groups who really struggle with getting that particular care so those outcomes could be worse for those other vulnerable groups who are usually, by the side, so we’re looking at things like people who are oftentimes labeled as non compliant because of their socioeconomic status.

We’re looking at different people who may be struggling with language or medication management or a variety of other mental health issues that could keep them from getting that right kind of care and so they’re oftentimes Left alone with their chronic condition.

The area that we’re focusing on is looking at: how do we keep people from ending up on dialysis, essentially, and dialysis is a, is in the United States is a very big business and, I’m working on this project with a EU based company, and so we’re looking at all these different options, all these different alternatives, and I think that one of the things that we’ve really focused on was, health literacy.

Thank you. was a big aspect in terms of helping us address this, but also the idea of nudging through leveraging behavioral science as a way of, behavioral science as a way of helping us. steer certain patients to more timely and higher quality outcomes as well.

[00:36:27] Tina Ličková: As we are doing this special in summer for healthcare. All I hear, and we will talk, we are talking with you, starting with you, we’ll talk with three other health experts or digital health experts. There are two topics coming up and you just mentioned one and that’s the behavioral change.

And a very simple question would be, why is that so important?

[00:36:53] James Mckinnon: The reason why it’s important is because health care can’t be managed by one person alone. As we’ve seen in the past with primary care physicians, they struggle with managing patients. And if you, and oftentimes what happens is that the end result is that the patient is non compliant and then they’re overlooked.

Getting patients involved to a certain level is going to be incredibly important and that health literacy, that one thing that even can drive action to showing up to an appointment on time, to getting that kind of screening that’s needed at the right time, can be crucial. So the patient doesn’t show up, there’s not much a healthcare provider can do, but if we can look at other novel ways of engaging that patient, nudging them to at home testing or other kinds of digital interventions that can be; That can get them to a diagnosis, then that really lowers that, that barrier there, that really lowers the bar.

But yeah, it can’t be done alone. It really can’t. And I think that this is where, this is where the promise of digital health, of digital health kind of comes in. The idea of really the idea of really… Engaging targeted patients and getting them to act and getting them to feel comfortable with acting so builds the kind of the right kind of trust that’s there so they can trust those tools that they’re using making them affordable, making them easy to use and convenient.

This is all going to be incredibly important to delivering those improved outcomes.

[00:38:32] Tina Ličková: And the second topic, which brings us a little bit back to what we already implied is diagnosing. I don’t think there is a moment in my life or, okay, when I’m freshly in love, maybe where I feel so vulnerable when being diagnosed with something. I remember some situation from my life, from the life of my family members, which affects you when you are actually in the process of diagnosing, you go to screening or you get some testings and you’re waiting for the diagnosis and you perfectly frame this as fear of finding out. And this is where I would like to also know a little bit of your wisdom. How can. digital health care specialists like you help in this area?

[00:39:24] James Mckinnon: Yeah, I think the fear of finding out is really it’s a really funny term because I, it’s something that comes from actually that comes from banking, after a shopping spree- people have a fear of finding out what their bank account is going to show them. And I think that you can deliver, you can transfer it or there’s an analog between that and finding out a diagnosis.

There are several dimensions of care that would need to acknowledge the different fears that people have. So it’s something like we have the fear of embarrassment and change. The fear of stereotypes or stereotypes related to treatment. There’s a fear of previous negative experiences that come along. So that means that mental health services would have to be deployed. And also the fear of just the treatment itself. So the idea is that it’s a mix of psychological, experiential, perceptive, and situational dimensions there that would have to be addressed in order to, to support those fears and to get people from that fight or flight situation and essentially what it does, it just lowers avoidance seeking behavior.

So again, this is also how some patients are painted as noncompliant ones that have these fears. The fears of finding out who has that avoidance seeking behavior often end up in a non compliance scenario where they’re going to need additional support and help. And not every healthcare system is equipped to deal with that.

So there is a promisor. There’s also something, there’s also another aspect there of of how, health literacy, nudging these types of things that are appearing in the healthcare field that may have worked with in more of a traditional setting when it comes down to when we look at these kinds of things that it’s behavioral change can also support and lower those fears to create more compliance, to create more, to create less.

Avoidance seeking behavior. I hope that answers your question. Yeah, it’s a really interesting field because I personally think that fear can definitely drive a person to not follow up with a doctor and a lot of people fall through the cracks. So many people will fall through the cracks and where we see a lot of strategies that work against the fear of finding out is we obviously see it in oncology.

So a lot of cancer treatment and a lot of cancer screening. There’s a lot of over communication. But when it comes down to diagnoses for conditions that are not necessarily felt or fully seen, that still can be life threatening. Different kinds of approaches and nudges definitely need to be there.

The promise of digital health could help change these things as long as it’s open enough and looking to different mindsets that are out there to get people to take those first steps in order to take it and even to take an action. I think that this is really where the beauty of digital health can come in and really can really get patients the kind of quality care that they need.

And also give them a, give them the, to improve that, those patient care outcomes and to lead to more equitable care delivery. I think that’s where we can see the best kinds of results.

[00:42:37] Tina Ličková: Genius. Close it up with your wisdom. What would you say to anybody who wants to enter the digital healthcare space or is working in the digital healthcare space, what are the best practices?

For working inclusively?

[00:42:54] James Mckinnon: Yeah.

[00:42:54] Tina Ličková: And building product, sorry.

[00:42:56] James Mckinnon: So if I could. I would say if I could give a piece of advice to those working in the digital health field and they want to try to follow ethical and inclusive practices I always start with saying, hey, putting patients first is a good start.

Really that’s, that should go without saying, but it’s still, somewhat of a struggle. I think also understanding that the problems that they’re facing are really complex. And there’s no quick solution. So you may not get to a solution within 12 weeks, but you could take a strong step towards a one type of solution that can lead to several kinds of positive outcomes.

Speaking continuously with people is really important. So the people, not just the people who receive the care, but also the people who deliver the care. And what I always say is, when you’re ever developing a product, always bake three key points in.

One of them is accountability. It’s not just about really holding, not just the… The idea is really holding the healthcare system, the healthcare provider, accountable. But also to have that accountability shared when it comes to decision making. Data accountability is incredibly important.

Transparency. As it leads to advances as it leads to better advances in healthcare and health literacy. So what’s happened is that, especially with the pandemic, as news as different types of news has leaked out. And also it’s, I would say, mutated into other things. People really struggle with a level of understanding what transparency is, and also with their health literacy.

And I actually think trust is a really important one. Trust can be hard to gain, and it takes a really long time. And I think that’s the, and that would be centered around really putting your patients first, spending, spending time with them, really getting to understand them in their, in the complex situation they’re in.

And lastly, I would always actually say, stay uncomfortable. Being really uncomfortable with the subject matter is okay. Again, a lot of the people that maybe you’re touching or you have the ability to support are going to be people you’re, you may be uncomfortable with. Yeah, and I would say and I would say that this, and I would say that this kind of, these kind of principles or these kind of points really stick to, I don’t know, I would say the reality of, or the or actually can give you a good foundation for a solid practice.

[00:45:24] Tina Ličková: James. Thanks. Where can people, listeners follow you, where can they inform themselves about your work?

[00:45:32] James Mckinnon: Yeah, so right now I have a website studioyoumeuswe.com. Also, they can follow me on Twitter under my name, James McKinnon, or under the studioyoumeuswe.com. And yeah, and I think what I’ll be doing is in the near future, posting some fun case studies around different approaches to bringing in diversity and inclusion and an equity into digital.

[00:45:54] Tina Ličková: Looking forward to that. Thank you very much for your time and for sharing the knowledge with us. Wishing you to stay healthy.

[00:46:04] James Mckinnon: Yeah. Same to you. Thank you very much.

[00:46:08] Tina Ličková: Thank you for listening to UX Research Geeks. If you liked this episode, don’t forget to share it with your friends, leave a review on your favorite podcast platform, and subscribe to stay updated when a new episode comes out.

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