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Tricia Okin at UX Camp Fall Home Edition 2020 (Video)

Designing Health Systems For Group Encounters in Rural Rwandan Communities

Tricia Okin presented “Designing Health Systems For Group Encounters in Rural Rwandan Communities” at UX Camp Fall 2020. Enjoy!

83% of Rwanda’s 12,000,000 population lives rurally outside of its main capital of Kigali. The Rwandan universal healthcare system was entirely built from the ground up after the Rwandan genocide as a way to address the health needs of all its citizens equally. This system, which is free to citizens, can successfully deliver quality healthcare at roughly $2 per person per year. It addresses the more immediate needs of the country’s rural citizens via an extensive network of healthcare centers and local community healthcare workers CHWs located in villages. Services offered at these clinics range from antenatal care, administering child nutrition programs, and diagnosing acute illnesses (including COVID-19 and malaria).

E-Heza is a tablet application used by CHWs in some of these health clinics. The ultimate goals of the CHWs are to diagnose, provide routine and simple care, and ultimately refer complex patients to the better equipped regional health centers. E-Heza’s primary role is to document patient care, support decision making, and lastly replace a paper-based system that required significant cognitive load on CHW and health center staff.

In this talk we’ll be addressing several topics:

  • How do we adapt the participatory design process when we’re unable to have direct access with the users of our designs? How do we build relationships with local healthcare team members when we have to design across geographical and cultural lines? How does the local team aid the work and send feedback back up the chain to affect design changes?
  • What does designing for a one-to-many healthcare interaction look like in terms of processing large segments of people and enabling non-clinical staff to make accurate medical decisions?
  • Are there parallel challenges to designing for American healthcare systems and those of rural Rwanda and how might they be affected by assumptions of class and race?

Tricia Okin

User Experience Lead & Service Designer

Tricia Okin is a lead user experience designer and service designer who uses design thinking for the public good and the good of her clients’ businesses. As an experienced design leader and strategist who has practiced human-centered design since 2004, she brings design to bear on wicked human and business problems such as educational innovation, open access health, and technology awareness. One of her current projects includes working with the Anti-Defamation League to create a toolkit educators use to reduce the school to prison pipeline and address law enforcement presence in schools. On another engaging project, she is working with a non-profit to design a tablet healthcare application used by community health workers in rural Rwanda who see hundreds of patients per day. Her approach to design is holistic and inclusive while being driven by effective results.

​​​The following transcript very likely contains typographical errors. Please forgive any mistakes!

Good morning, everyone. My name is Trisha open. Welcome to my tiny studio in Brooklyn, New York, as you can see there. Yeah.

So I’m a User Experience honor and source designer based in Brooklyn, as well as a few other places internationally, but let’s see here, let’s just go ahead and get cracking. So overall, as as Brad was mentioning, like my design philosophy is that or my entire mission is really using design thinking and different design processes of the public good, for the good of people’s business for the most part, whether that’s larger organizations or corporate or what have you, but even even like non-profits and different NGOS will happen, so… Yeah.

So it’s gonna jump in real quick, so what we’re gonna be talking about today, so really short agenda is pretty much like the problem of administering healthcare in rural environments, then we’re gonna just see a few slides of the actual tablet application that I’m working on in this project, I’m gonna talk to you more about how we address innovation in terms of how we design and versus what we design, and then some challenges and rapid questions. Okay.

And everyone can see my slides and everything… Yeah. Good. So first off, the main question is, how might we serve healthcare needs of people and dissenters, and this came about because I was thinking very much in case of Rwanda, but once you get to the end of the actual slides or what have your presentation… To actually reframe that a little bit too… Quick question. So

Something that I’m, I find really amazing too, is that 83% of Rwandans live in rule villages, and if you kind of do the rough approximation, it’s about 10 million people living in rural centers of the capitalist Kigali, but essentially everyone else. It’s pretty much spread out. In the screeners environment, for instance. Yeah, Rwanda itself is very interesting. It has a universal health care system that was designed as a national system, it’s extremely successful, and so it’s something that happened that came out of… It was one of the good things that came out of the Rwandan genocide to folks Metro the early to mid-90s, just kind of like the phone Hotel Rwanda and what that is about.

And so essentially what happened after the along with a reconciliation is that they just decided to start tabula Rosa on a lot of their actual government systems and the way benefits, like healthcare benefits, and the way like Digital Integration was happening throughout the country. So they have this really successful health care system where they’re able to provide healthcare, arsinoe and love over water for 210 a month to go us all as a month. Right, but the issue though, one of the issues is that it’s… Because it’s so heavily rule the actual country’s population, is that a lot of the healthcare was originally designed for… The laws, EMS, were designed for the urban context, or rather they need any other systems to be able to be customized for the actual needs of their clientele within the rural areas, and that’s something that they’re constantly working on. Okay, and so another artifact, or was it health care workers, we’re starting to feel a bit powerless, being stuck between the national expectations and metrics, the needs of their local patients or facilities, as well as the still be users.

And this may seem like maybe even a paternalistic, like everyone’s like, our misperception of what goes on Africa, what have you, however… Or just on poverty in the area poverty. However, Rwanda itself is actually, as I was mentioning, it’s a really innovative nation, it’s been winning awards actually for last 10 years and how they’re approaching everything, and a good friend of mine, like Kelly summarises, which is Danny, it’s… The saying of flavor on is a really small nation that’s doing everything that you’ll think they’re actually doing it to experience, but they’re really not… What do you think we’re doing? So for abortive process, they’re doing that constantly, and they’re doing it in service of their small rural communities all the time.

They’re constantly creating tools and they’re… And they’re so open to experimentation, and I was actually shocked at how innovative they wanna work for my wood program, who everyone… And they’re very design-heavy as well, they’re trying to equip certain parts of their comments, orbiter population to really make it better for next generation. The

Project that I am working with, they used to be called The Hong project, but they changed the same recently to tip that essentially like the initials of an Gannet, they change into typical health and what this NGO… What this program does is that they wanted to originally serve medically underserved communities and to create a ground of ground up on the bottom of sustainable approach to delivering healthcare towards rural communities, and initially the program started out with FPF, that’s a fortified blended food, that’s what I’m sure, you guys sort of the peanut paste, that’s like a high density nutrition type of stuff.

So at first I started out there, a different antenatal care, as well as HIV and AIDS monitoring and the malaria, but then eventually what they… And I’ll get to that. So here’s an example, for instance, of some of the folks, and that’s the actual application that the gunman on the left, on the right inside picture is using the tablet application, like I said, start out with that gene home with Chile fruition programs. And then recently, I was brought on to actually help expand it, so overall.

We tend to use a basic Manipur design model, and in terms of working directly with the health care workers who are in a few different role settings, but pretty much what they wanted to do is that they want to expand their offering towards what’s called acute illness, so a ceding, like malaria, gastroenteritis, I guess flew in some cases, in this case, when I was brought in, I started working with them in March… Literally, my first day was like March 13th, and that’s when your want to lock down for covid, and they’re like, Patricia, can you possibly try designing a new module for acute illness, like the address is covid 19. So that way we could share with their one… And Ministry of Health and see if they can take it up. I was like, Okay. ’cause that’s what you do, I guess. So yeah, so pretty much what they wanna do was to break out to expand their offering and an overall to give workers, these volunteer workers are comfort in making certain types of covid covid diagnoses or to understand how to escalate further. Right.

So some of the challenges that they were facing, a lack of data, access to connect devices, so a lot of stuff means that they will be downloading data on tablets, were on phones, and then switching off the data and then working off-line and then re-uploading the data, and I’ll go through the entire healthcare process a bit, another challenge was the delayed or unreliable data from Central emrs, and EMR is an electronic medical records, that’s an electrical electronic medical record system in some cases. Right. So what happen is that the… So in some cases, if they’re trying to work offline and then when they went back to sink it, there was bad sinking it, nothing was working. So

Some of the other challenges are facing is that they’re seeing about 150 to 100 to 200 patients per day for various reasons, again, whether that’s like a child clinic, like a toddler child Clinic, on one particular day, it may be… And it’s a mix. So in some cases, it may be folks with malaria asset, an aria who are feeling ill, then you have babies in the next room, it’s a huge mix of different cases coming to different stations, and it’s just a huge volume compared to in the US where it’s probably more like 50 patients one day or even 30-something to look, a lot less depending on where your center is, another huge challenge was that they’re faced using a paper-based system where the AWS… Those are community health workers. They had to complete up to 17 different paper ledgers for each patient, so imagine if you’re taking the measurement of a child’s, right, ’cause you’re doing a Child Wellness Visit and one ledgers record the weight, another ledger record the length of the child, and other ledger is to record temperature of the child. And they’re literally 17 paper ledgers, and it’s just a mash of paper and CCHS, these folks are actually…

They’re not paid. It’s completely volunteer basis. It’s just that folks are doing it because they love their community so much and they want to help their community that much, so the cognitive load on the stews and so there’s a huge disadvantage and that capacity castles and care to patients and maybe walk miles or taken centenary arrive there, and this, this becomes problematic after a certain point.

So EA, which was kind of like a play on the words a hazard, and AZA is actually the original name for again, that FPF, the nutrition pace, high protein or high calorie dense food. It has a double application was developed to address these issues, especially around a massive paperwork and The Hague load. So I’m just gonna take you through just really quickly, the Rwandan healthcare system, and this is a way… But important.

So what happens is that if you actually look all the way to write… So there’s a village, so let’s just say your village, and they’re probably about 10 villages, they’re in what’s called that catchment area, that first Cashman area. And within that catchment area, there’s the centers, we don’t now, So Liana call them health centers, ’cause that’s a very specific term, we just call them like let’s say health stations, where the chws community health workers actually then help folks, they see them, they check them in, they do some very carry diet diagnosis, and then if anything happens, people then get referred up to the actual health centers, and then also the data is passed from those initial health stations up to the health centers, so there’s still the centralized record, however, what sensitized on becomes improperly since for the most part, right? It has the opportunity to become properly since then within the Cashman area for the health centers, there are about five throughout five health centers for each particular catchment area, and then eventually the next Ellum there is a district hospital. It’s essentially 10 villages to one particular Cashman area, and then about five health centers to one district hospital, and then they’re about, I think, 10 district hospitals, the most part, in terms of how…

I just mentioned in terms of data, so what happens is that the data is collected at a lower level and then it gets… Then gets sent up and then it gets passed back down. Yeah, so he has itself as a tablet application, this is something that the founders keep trying to say that is not… It’s not an EMR because otherwise it would just be way different. So it’s a digital data solution and not an EMR system, and that it’s not… You’re not dealing with all these dense calculations and huge amounts of personal data, it’s actually, if you think it’s actually like a user interface in order to understand some of the information that’s being used in the MS. And so based on that, it works on the national databases, open open to Mrs And HMIS, and what’s good about it is that it can work with the data being offline, I can sink later after after connections are re-established and you can use it either on tablet it’s pretty much used with Android systems to use tablet or all these different phones called marathons, there are phones, they’re specifically used in CERN parts of Africa where they’re really inexpensive, but they’re also enjoyed base as well that…

Morrow as an M-A-R-A phones. And of course, the main thing too is to ease physical and mental workloads for the actual local teams. That’s a key point there. So what they do, or in the case of Mason else, that it does is that it’s built for some part of the tablet, sorry for some part operation, it’s built to natively handle one to-many healthcare interactions, especially for antenatal care, because what may happen is that you’ll get, let’s say the 11 o’clock block of people, and those are probably about 50 or 60 people, and then you’ll split up those folks amongst the chws and then each CHW is handling 10 to 15 people or so… Right, so it’s built to where you can essentially scroll and find a… Find a particular caretaker, and it’s not necessarily some other maybe like What’s a grandmother or the father, or whatever it may be, find a Epicor caretaker, check in that person, and then you have 10 people that you’re then going to go down the line and then… And you’ll see some examples of this ad in terms like measuring… Measuring children, etcetera, etcetera.

Right, so next steps, and what we’re doing and designing is that we’re building out the Equine modules for group encounters right now, we’re working on the individual encounters and with acute illness and for most part, what it is is that it’s… For Oculus is we’re trying to diagnose roughly malaria to gastroenteritis as well as covid 19, and so this can be also… What’s another one? That’s not really horrible thing that could strike you, but it’s not fluid, but there’s really acute illness, but essentially what we’re doing, what we’re building is creating a decision and a decision, make an engine for lower skilled worker associations to make informed medical care decisions, ’cause the big thing here is that is in theory, they’re not doctors, they’re not nurses, it’s a complete separate category, it’s a volunteer category, so in theory, they don’t have medical knowledge, but if you’ve been working as a CHW for a long time, especially within your community, you know at a certain point like, Okay, I think this person is starting to have different signs, a malaria signs of covid 19.

But the point is that it’s meant to… And what’s good about this is meant to help those chws rapidly make decisions and say, We’re checking this box, this box, fevers, chills, night sweats, what’s called por suck or for Secchi Ren left RG, anything else like that. And then they’re able to tether able to then quickly, rapidly and diagnose and see, Alright, this is a potential issue and this tends to be escalated up. And for me, when I first started working on this, I really had this impression of like, Well, why we empower a chest or what have you, and I had to really learn to just slow my role and say like, That’s not… It feels really paternalistic to me because I’m very much about empowering people that way, because of me, I think they’re the folks who are on the brown and working on this, but… The key factor is that I started in a different way. It’s like this is a way to also protect the chws because we don’t want them fool around with someone who might possibly have covid, it’s completely okay, or someone has malaria, whatever else, ’cause that can rapidly spread through community.

So it’s a way to say like, Okay, here’s this, this, and this. And it looks like this, let’s just write your referral and get you pretty much get you out of here and working and putting to the proper place in order to protect the community and protect that person and to give proper guidance. So for me, that was a huge brain shift of where… ’cause I’m always of the pan of the pain that every… Everyone has a certain amount of experience and that carries some weight, but the truth is like not everyone’s knowledge has the same weight, and it feels pretrial STIC and I had to trade against it, but it makes sense. It just makes sense. It’s very different for me. So the other thing too, is that it tends to capture symptoms, Travel History, medication in terms of… Also, I sang the patient, this is a slightly older image, but now we’ve also added in a module after contact exposure, which you’re registering like who’s… Who they’ve been in contact with? That’s another section called contact 114, which is like the RAND in health care service. Is that something that Titus are not going to be able to do within the app as well too.

Of course, after a certain amount of requirements are met in temperature release 375 Celsius, and this kind of fever of X, Y or Z, it automatically throws up a warning. And then it gives directions in terms of isolating… Isolating the patient. And so this is actually… This was a question that we were facing too, is how much do we put into this app or do we start to deviate too much? And so we were having this talk, this tussle back and forth in terms of the design team and the founder and the folks in Rwanda, the medical team in Rwanda, eventually we came to… We came to the decision to start adding this on design now to starting a resource section for the actual chws that includes things like videos that they can then show folks who are sitting in the health station, this is what it means to isolate. Right.

Are you gonna be able to isolate in your house, if not, why… And so it’s a way also, and the thing that came out of user-tested recently, it’s a way to understand how the chws themselves feel in terms of delivering this information, because as we’re testing with the station abuse with the training, they felt kind of scared to try to tell people that they’re gonna have to isolate and they themselves… And the shows themselves, we have all the direct information, so we decided to now the next steps, build into a resource library of different articles, Desh, video stream, local Rwandan sources and what have you, and that are in Kenyan that will help this AWS try to convey the message better to potential patients and service users. So here are just a couple of visual examples, and this is more so in the anti-natal… No, sorry, not had to know in the child nutrition program, measuring that poor little kid on the left hand side, that’s the way folks are doing measuring in terms of length, but height, and then checking for on the right-hand side, checking the arm… The arm girth to see if the child is growing, different things like that, and if you see in that woman’s hand on the lower right hand, with one with the yellow and red, got a dress, that’s where using the application on a morphine.

So in some cases… Just to go back real quick. So if you notice in this left-hand picture, that’s the line, this is the one-to-many encounter we’re talking about, when normally you would probably go into, if you have kids or even for yourself, you would go into your own doctor’s office or a community health center, and those folks are waiting. But you get… You would be taken off into an individual room, not… So here in Orlando, everything is done by group, that’s changed now more with covid, but you’re still pretty much in a group and everyone was messed up, but it’s still a very much a one-to-many encounter situations.

Of course, here in this case, that’s taking the thinking the children’s weight, they still traditionally wave way kids like this.

So in terms of working together, and some of some of the challenges and some of the ways I have to look at innovation and try to contextualize it.

So in the US, what you tend to design for are encounter-based and medical encounter into… For instance, when you go just to your basic doctor’s office or if let’s say you’re going to pharmacy or anything else like that, so it’s one doctor or nurse or patient, etcetera, and kind of a health care provider and one patient… That’s it. It’s one-to-one period.

So in certain contexts may be urgent care, so that appointment-based with focused on short appointments and different routine things, it’s to help you center to triage.

So if you’re caught your leg, you go into urgent care, it’s 100 PM, and if it’s 100 am, you go in there and instead of going to actual hospital, so you go there, you probably set like an hour, maybe an hour or two, and you go and you get out and then you can go to the pharmacy for in kind of communication.

Another context that’s what happening in the last… Especially this year, and maybe even last or two is drive-up testing and flu clinics, so whether that’s for covid or just for flu in general, so it might be scheduled where they give you… You schedule time and you go to your car, you walk up.

And as long as you just arrive by our Manila time slots, but they are traditional appointments, you spoke at time, so like you said, and you get the test or you get told how to take the test to go home and then you… And then you book it on out of there, right? And

Then if there’s an overall system, what’s called value-based care, and this is where… This is where healthcare organizations essentially are aiming… Are going to be paid based on reimburse based on the patient’s entire health, and so over here in US is called value-based care, but in another part of healthcare, something I’ve worked in, again in Central Africa, this is also what’s called results-based financing. Results-based financing is trying to understand… And so this is a program or a type of mentality that the WHO, whoever else uses, where the government, whoever else gets reimbursed based on how many actual people have been treated. Right, so for instance, if the whore somewhere else, somewhere in Switzerland or Red Cross, they send 50000 vaccines for, let’s say mils to… To Kenya. So 50000 vaccines leave Switzerland. You get to Kenya.

You get to Kenya, and then there are about 48000 vaccines. And then by the time I get this purse out, there are only about 40000 vaccines that were disbursed out, so then you only get paid for the 40000, and then there’s somehow… And that’s too got lost, right. So essentially value-based care, another version of RDF, the results-based financing, is understanding the patient’s entire health pattern and reporting on trends across the entire patients, health and their panel, and essentially looking at the standard care for chronic conditions and being sure that patients are really taking their own conditions seriously and Hunter being diligent about things, so… But however, in Marwan, just in this acute case, we’re talking about one CHW to several patients, and so is they’re triaging to either a quick treatment or sending them to a health center… Right, so the stay before, there’s multiple encounters patients at one time. Right. And in some cases, that’s, as I mentioned, for this rapid clinical decision-making for people who don’t have a ton Lolita expertise, in this case, this is a one stage like training another crew, so it’s this whole level of peer-to-peer learning that goes on quite a bit too.

And so in terms of what we’re designing like for… In this case, it’s gonna be the ability to quickly flag anytime a patient needs more involved treatment. Right, and so that way we can say this person needs X, Y or Z, send them off there, which in and of itself as a for triage, so… And it’s also designing a system where the health concerns or the health as well as the concerns of the actual stage use themselves along the patients are addressed, that’s the main thing, and understanding how we can support the sieves and reinforce their safety while advising the patient on their next steps and that in the industry, it’s called anticipatory guidance, or for patient saying like, Okay, well, this is what we’re gonna do, this is what’s gonna happen to you. Next, we’re gonna call you. Then you’re gonna isolate… Then you’re gonna do X, Y, or Z. So in terms of how I… Like my approach to designing what I had to do was that I had to create a two-part perspective with the actual user chest. Right, so what that means is that originally I was running user test for some of the screens and saying, Okay, well…

Because what was happening was that the medical team in Rwanda, we are actually going to be training or testing with the chws because I could not be there… Right, and I was actually supposed to be in Rwanda testing in July, but covid, the Kibo on that. So what I had to do was at first I wrote the user test to be really like mechanical and clinical, but at a certain point I was like, Wait a minute, let’s also address how the cows might feel when they’re delivering this news, when they’re trying to understand… How they should even talk to people… Right. So essentially, there’s one part of the test that was revolving around what the cause had to say, and then what the actual medical Stafford trained the US then had to observe and had the ache how they’re feeling. And that became this really interesting duality of… That was going on. So the other thing too was that it started the system of democratizing user research and facilitation because again, I couldn’t be there and no matter what, because I work remotely, emmen, Brooklyn books are six hours ahead of me in Rwanda, so I essentially had to start teaming up with the local medical team to draft questions, and then they would translate that into a…

Your reward… Some example questions, for instance, for How do chws convey the concepts of patients… How would they talk to patients about patient about isolating them or contact the health care center, or do the symptoms of the health conditions in the app actually match what they see, because it’s one thing for me to be designing something and I think for the actual main head of the group who see yourself as a doctor to be writing these questions, so I think to really understand a perspective of the medical team that’s there and understanding what is it that they’re seeing and does it actually match what we’re theory designing over here in America? Yeah, so some of the challenges that I prickly had, like I mentioned before, I was like, I had to reconcile not testing directly with the chws, and so that means that I’ve had to build up some kind of rapport with the medical staff, and I personally have never talked to W, which is… It’s really odd, but I talked to the top tatami Al staff and we trade information back and forth, and what was really cool about the recent user test, Hornish I learned was that because essentially the training, the trainings can function…

Sorry, the trains can function as a user test, and before that I just saw like, Oh, the training is just like them sitting in a room somewhere and the projector… What have you… No, it’s more… So the stage Ws are like, No, that doesn’t really make sense. So can I do that? Or we would rather say this, and it really becomes this whole other level of participatory design that I didn’t really even know and someone else is CTO after doing to actually trust instead of worrying about not having access, if you just take on this perspective of that pulse being user test, I think you go a lot further and you know what they’re… Bodyweight, and

So for me, it was really good to actually just to take the anxiety level down to bed and say like, Okay, let me just see what happens with what the feedback… The chws spring, and it really pushed me at Ford and I’m really glad that we… That I actually had that new perspective given to me, ’cause it feels much more like a partnership now too, another

Challenge, and I’m almost done broadcaster slides, is working remotely with the healthcare to Amanda, like I said, They’re six hours ahead. We have a dev team in the Middle East. Our PM is in Western Europe, somewhere in France, and I’m in Brooklyn, ctos in Chicago. And the founders like in California, so we have a nine-hour stretch of time, and it’s just… That’s just one prickly challenge, but… But you pay, you just roll with the punches ’cause it’s a freaking pandemic, right. And then some cultural challenges, just swing to take home with you. It’s something that I started trying to understand, what biases could I possibly bring to design process is someone who’s thrown what’s called the global north while designing for the global south, so that’s designed for the blues before. And the global north works a blue South. That is the concept of in theory, people are more… In theory, people are more like industrial, right, like in the northern… Cooler weather, and this happens, this happens in almost every single country, right, ’cause this is what happened with the American Civil War, like the perception of the industrious North versus like the agrarian South, that was very slow and language or what have you, and then there’s these misperceptions that happen, and it’s kind of the paternalistic relationship, and this is what…

This is also what I use a lot of aid programs, two of those folks down there, I don’t really know what they’re doing, and they’re slower than us. Right.

So even though I, I myself on the block and I am someone who’s literally of half African, half Westend, I’m still very Western, and I was trying to understand what my biases would bring to the specular project. Right. And then the last particular question is understanding, is designing the group or just a question, think about this design or approve healthcare encounters and roll areas. Are they the same? Both in Rwanda as well as the United States. ’cause a key point here is that both places lack resources or an infrastructure, we fertilize, especially in pandemic, especially now, that now that’s hitting the rural areas in the United States, that a lot of folks like in midwest onto, they’re suffering because they have a very broken network and it’s not as… It’s not able to sustain the stress that’s being put on it, and this is a huge irony again, that Rwanda, even though in theory, it’s very rural, their covid cases, like in June and July when everyone else is flaring up, they literally had 40 covid debts and only about 1500 cases, because they were so agile, they were able to just jump on it and very effectively wash anything that was coming through, it’s starting to go up now, but even still compared to other large areas in the US, they were totally on it, so it’s a really interesting question to ask yourself, is it very similar in terms of rule airs in the US versus rural areas in Rwanda to other places where we think are the developing world?

That’s it for me. Any questions? And here’s my contact info.

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