07.07.22
Sara Hendren + Lee Moreau | Audio

The Futures Archive S2E9: The Insulin Pump


How does the act of care get designed into our everyday lives—beyond medical procedures and technology, into our relationships, our schedules, our lives? On this episode of The Futures Archive, Lee Moreau and Sara Hendren consider the insulin pump, and discuss what it might look like to think about a medical device in the context of all that’s actually human.

With additional insights from Jeff Bennett, Gianna Marzilli Ericson, Aaron Oppenheimer, and Christina Harrington.

Sara talked to Lee about how disease is inherently social:
One of the strongest messages in this big space is that caregiving is actually part of life. No matter what, we are fundamentally animalistic, not able to live on our own. So that means that we need each other. And instead of designing and automating the need out, we might say, where's the need? Actually, where does it belong in the exchange?
Lee Moreau is President of Other Tomorrows, a design and innovation consultancy based in Boston, and a Professor of Practice in Design at Northeastern University.

Sara Hendren Sara Hendren is an artist, design researcher, writer, and professor at Olin College of Engineering. She is the author of What Can A Body Do? How We Meet the Built World and the Wired article "The New Frontier of Prosthetics? Tech for Independent Living."

Jeff Bennett is Professor and Chair of Communication Studies at Vanderbilt University and the author of Managing Diabetes: The Cultural Politics of Disease.

Gianna Marzilli Ericson is is a UX designer and a service designer with athenahealth.

Aaron Oppenheimer is Systems Engineer at Center for Astrophysics, a collaboration between Harvard and Smithsonian.

Dr. Christina Harrington is a designer and qualitative researcher at the HCI Institute at Carnegie Mellon University and the Director of the Equity and Health Innovations Design Research Lab.


Subscribe to The Futures Archive on Apple Podcasts or your favorite podcast app. And you can browse the show archive.

Kathleen Fu created the illustrations for each episode.

A big thanks to this season’s sponsor, Automattic.



Transcript

Lee Moreau
Welcome to The Futures Archive, a show about human centered design, where this season we'll take an object, look for the human at the center and keep asking questions. I'm Lee Moreau...

Sara Hendren
...And I'm Sara Hendren.

Lee Moreau
On each episode, we're going to start with an object with power. Today, that object is the insulin pump. We'll look at the history of that object from our perspective as designers who've done work in human centered design, not just how it looks and feels, but also the relationship between that object and the people it was designed for...

Sara Hendren
...And with other humans too.

Lee Moreau
The Futures Archive is brought to you by the design team at Automattic. Later on, we'll hear from Jasmine Ho, a designer at Tumblr.

Lee Moreau
Hi, Sara, welcome back. It's great to see you again.

Sara Hendren
It's great to see you, too, Lee. Glad to be here.

Lee Moreau
So this is the third episode on health and safety where we've been talking about various topics. And this one is a little bit different because we're going to talk about something that's an everyday device for many people, but it's also medical technology. We're going to be talking about the insulin pump today, and I don't have one. I don't have diabetes. I people in my family that do, but, you know, they don't wear an insulin pump. I don't know that much about it other than through other people's stories. Is this something that you have a lot of experience with?

Sara Hendren
No, it's not. I don't have a lot of experience with this. But as you say, it's different from our categories that we've looked at so far where you can make a tie to health care, but it also has this diffuse kind of broad, everyday life thing. And again, for people who use this, it's every day. But now we're in the realm of real biomedical technology. And my understanding from our colleagues in design, Lee, tell me if this is your experience— but, that biomedical design is a very particular field. It takes a lot to ramp up to get sort of knowledgeable about governmental sort of standardization and all those protocols and things. And that's that's really where we are, right? We're in the kind of yes, this thing is has a knock-about like wearable quality, but it's also in the specialist realm of medical tech.

Lee Moreau
Highly regulated space. And quite often somebody needs to write a prescription for you to even engage with a lot of these devices, right. So these are not, in many cases, things that you can necessarily get off the shelf.

Sara Hendren
Yeah, that's right. But they're also not a once a day thing. They do have to be durable and resilient and also show up like your other personal devices, sort of. There's certainly an echo there. So it'll be fun to talk through where those are overlapping and where those are, you know, where an insulin pump is distinctive.

Lee Moreau
In sort of preparation for the episode— we're talking a lot about how one needs to monitor their their condition in order to really engage these. So in some cases, the devices actually do the monitoring for you or make you think that they are, and in other cases you have to do monitoring and then report out to the device to say, hey, I checked it and here's where I'm at. So like, do you have a daily monitoring experience that you do in your life where that happens to you, but that makes you mindful of of how you are in the world?

Sara Hendren
I mean, one thing — it's funny I am thinking now about I just started using a smartwatch and it's one of those many things that I was kind of underwhelmed by when it came onto the market. But like one of my best friends said, Oh, this actually it keeps me from the kind of magnetizing effect of the phone and it lets me do this kind of lightweight monitoring around parenting Lee. So it's like if I'm on all these group threads about like who's picking up for the whatever sports practice, and also then my kids who are teenagers now can just slightly tell me like, here's what I'm doing after school, here's where we are, can you stop by the grocery store? And I do find that that's a little monitoring thing that's passive in a way that I like. I would have thought of it as like, Oh, yet more devices. But in fact, it's actually been kind of interesting and more minimal by addition, if that makes sense.

Lee Moreau
It'll be interesting as we go through this conversation. To what degree of monitoring has become slightly less invasive in our lives?

Sara Hendren
Yes. Yes. I think this is really what a lot of people in the wearables world are thinking about, right. What is infinite personalization, which is one kind of value. But it's so clear that you there's a fine line to crossing over to kind of just pure chaos.

Lee Moreau
So in addition to this, we're going to be talking, I think, about the services that come along with this monitoring, right? So whether it's with your smartwatch or various kind of medical applications, new things that are coming online which start to create this kind of continuum of care in your life, this kind of monitoring and mindfulness or registering of various conditions and activities. So that'll that'll probably come up through the conversation, too. But we're going to dig into the insulin pump as we get started. So we're going to hear from historians and other designers who've done work on the insulin pump. And so far, this is what we've heard.

Jeff Bennett
Diabetes is just a chronic condition that inhibits food from being converted into energy. When left untreated, it leads to higher blood sugars, which can create complications down the line.

Lee Moreau
Jeff Bennett is a professor in the Department of Communication Studies at Vanderbilt University. He's the author of Managing Diabetes: The Cultural Politics of Disease.

Jeff Bennett
There are a couple of different tropes that tend to organize the ways we talk about diabetes. And one of those, for example, is this idea of management — make sure you're taking care of yourself or, you know, it's an okay disease to have as long as you manage it. But I think management really eclipses the everyday complications that go along with something like insulin delivery.

Lee Moreau
So management — that's going to be pretty central here. But before we get started on that, you know, this topic of health and safety overall and we started our first conversation with really medical equipment for health and safety that was used only in extreme times. So the AED, the defibrillator that we were talking about, I think I've never used one. You've never used one, we hope to never use one. But we understand why it exists in the world and how it it represents a kind of sort of superheroic ability. Then we talked about the refrigerator in our in our most recent conversation where that's sort of this health and safety technology that's in almost everyone's kitchen, right. But now we're talking about, as we said before, this real medical technology with real medical implications and purposes. Talk about the experience that you've had designing in this realm.

Sara Hendren
You know, I've done more work, as, you know, in disability sort of adjacent spaces, but things that bump up against the management of kind of continuous conditions or conditions that evolve and change. And so I'm thinking about design that I've done in partnership with special ed classrooms around sensory processing and furniture. So again, those are those are adjacent. You know, you wouldn't task undergraduate designers with the responsibility of real biomedical tech that's going to go out to the world, right. There's an elaborate process for that. Nonetheless, management is a really interesting idea because people tend not to think of it as a- as a long term process that's both functional, but also has to do with the kind of cognitive planning around something that's a sort of waking up every day and thinking about this condition or this atypicality. And also we'll get into this later, the social aspects of what that's like. So precisely because it's so personal and intimate, it begs for the kind of questions about narrative and the humans at the center caregiving, the kind of dyads of who's around in an emergency, who's there to help administer if needed, what happens when the tech goes wrong — all of those kind of adjacent spaces.

Lee Moreau
You just used the phrase bumping up to describe your role as a designer, interacting with these other things. And I feel like actually a lot of the context that we're dealing with is about these other services and experiences that are bumping up against us as humans. In a good way, it's just like a nudge or a bump. In a bad way, it's a barrage or having a pain inflicted on us, right? This sort of bumping up is actually the kind of battlefield that we exist within as designers.

Sara Hendren
I think that's right. And certainly in my space in disability, I think people underestimate, for example, adaptive fashion precisely for this bumping up thing, Lee. So it's sort of like people have- a lot of people have thought about the wheelchair, optimizing the wheelchair, adaptive sports in wheelchairs, all terrain wheelchairs. Fewer people have thought about the clothing that you might design to be able to use the wheelchair all day long in some examples, comfortably with the different kind of dimensions and fabrics that that would require. That's a bumping up I think, that's an adjacent space that goes, Oh, this also is sort of biomedical ish, but it's it's bumping up in that way.

Lee Moreau
That's a great point. And if listeners want to hear more about disability in fashion or about that kind of design, they can listen to our episode on the uniform from season one of our show that I co-hosted with Grace Jun. So we're going to go back to this idea of management and specifically with the insulin pump. But before we do that, you kind of have to have a sense of the history of insulin. So insulin was discovered back in the 1920s. And and since then, medical technology has sort of moved from syringe for injecting insulin into sort of insulin pens and then insulin pumps, which were first kind of commercially available in the 1970s. And then later on, we've gotten more sophisticated with the technology. So now we have these sort of sensor augmented pumps in the 1990s where we can both deliver insulin and then later with continuous glucose monitoring or CGMs, we're able to basically monitor and deliver in a kind of back and forth interplay working with our body. How do we talk about management as we start to introduce increasing layers of technology into the conversation? So when we move from very simple objects, which kind of feel more like products into things that have digital components, service components, much more kind of orchestrated experiences.

Sara Hendren
Yeah, that's right. And I think what you said there about interacting with a sensor, interacting with the machine, getting feedback that is highly technical, that's still not going to erase the need for the override. It's a little bit like the AED, right?

Lee Moreau
Mhm.

Sara Hendren
We got the step by step instructions, but we also had to think about, okay, but what is going to motivate human agency by both, some combination of reassurance and also decision making. You don't want to design out the person's own sense of it doesn't matter what the numbers say, I don't feel right. I need a doctor. You want that person, right? All of us to have that kind of inner compass about what's going on. And of course, you want your devices to be smarter and more precise. So all of that has to do with both the function of what's available, how it's picking up signals and so on, but also how it's delivering the information. And then what are your choice points after that, buttons and inputs and outputs.

Lee Moreau
So this is complicated and it also requires a kind of the role and really the responsibility of the user. So Jeff Bennett actually talked about his own experiences with this intersection of management and his own diabetes condition.

Jeff Bennett
Insulin pumps and CGMs and all of these technologies are really great, but there are real barriers between them in getting them to the people who could actually use them. I've almost gone on an insulin pump many times before and never have. And on at least one of those occasions it was because the health care staff just made it a completely impossible process. It was not easily obtainable. I just kept hitting barriers and I eventually gave up. I felt like I was speaking past somebody who didn't understand the disease that I was living with in the ways that I was living with it.

Lee Moreau
Jeff wrote a book called Managing Diabetes, right, this is incredibly personal, and yet, you know, he's had this kind of an ordeal.

Sara Hendren
Yeah, it's true. And I mean, here's where you do have to think. If you are on the health care end of this and delivering services or I mean, even that's an impersonal way of talking about it, about bedside manner and about trying to construct with somebody how to how to both feel ownership and also partnership in the in the management of their care. And what are all the moments at which he felt the message was the onboarding that it would take to get you this machine or the bureaucratic process to get you this machine was somehow felt by him not to be worth it. I mean, it's certainly not the first time I've heard that from people who suddenly are managing or have long been managing a condition that they are responsiblized, as we say in academia, you know, with their own care. And, boy, is that a mixed bag. So it's just interesting to think about designers if they decide, yeah, okay, I'm going to take the plunge into the biomedical design space. You know, Diagram Office is a little group in Brooklyn that does specializes in biomedical design. And they are just so attentive to all these orbits of care, services, values, contradictions, because they've gone deep into the space. In other words, precisely because they've gone so technical, they've understood that the systems indicate the non-technical, too.

Lee Moreau
And how do we do that in the classroom? I mean, you I admire your work. And one of the things I think you do so well is kind of bring students into the very sight of this, well, bumping up against thing that we were talking about before.

Sara Hendren
Yeah.

Lee Moreau
Understanding the relationship between not just the pure technology solution — yay, we've- we've, you know, we've got tech here that will save the world, but also the personal implication.

Sara Hendren
Yeah, and I think here's where certainly in disability, I think that designers and engineers should just get clear that there are there are different parallel projects that you could take up depending on the the use case you're looking at and to understand that it could be otherwise. So I'll give you an example. In the case of deafness, you could spend all of your time specializing in the biomedical project of cochlear implants, hearing aids. It's a huge space, but you also could go in that service design way. You could go to the signing Starbucks in Washington, DC, and you would see via a service design a way for a Starbucks to be actually completely managed and owned and run by a deaf and hard of hearing staff without actually interpreters or anything. It's a technical fix. It's a combination of an LCD wipe away tablet, automated credit card transaction, and a monitor at the end of the coffee bar instead of calling out your name with your order. It's quite simple. If designers and engineers take up these projects, it's just saying there are parallel ways to address these issues. How-how attentive can I be to which one of those projects is kind of calling to me, and what can I contribute? And then what- where does my expertize kind of stop? You know, like if you're if you're working on hearing aids and cochlear implants, that's great. Just don't have your marketing be proclaiming the end of deafness. Don't do that. If you look at the long history of deaf politics and deaf identity, you will see a rich and thriving culture. If you're aware of that, right, it doesn't negate the good work of hearing aids. But all of that is just to say you need more than certainly more than your CAD and engineering skills, and you need a kind of embeddedness in context and culture.

Lee Moreau
Well, on that note, let's hear a little bit more from Jeff again.

Jeff Bennett
I think we have a tendency in our culture to try to individualize disease and see that if somebody can just fight hard enough against it or they just give enough attention that somehow they can overcome its negative consequences. But the truth of the matter is, disease is inherently social. It is inherently cultural and we have to be giving attention to as many structural problems as we do individual notions of personal responsibility.

Lee Moreau
Sara, right now you're in dialog with Jeff, right?

Sara Hendren
Yes. Yes. I mean, singing my song. Thank you, Jeff. It's great to hear. And so beautifully put. And here I think it's it's good that we just talked about deafness because that's a very particular kind of disability category. But in disability studies, we make a distinction between disability and debility. Somebody is living with a disease that they would like to be cured, right. That's not the case. Always in deafness at all. Like that's that's a kind of form of human variation. But when we're talking about disease, oftentimes people are looking for medical treatment and indeed cures. But as Jeff says, the bottom line, no matter what is that they need the caregiving and social kind of relations is all part of that, not just with your clinician, but with all the people around you. And one of the strongest messages in in this big space is that caregiving is actually part of life. Right? No matter what, we were fundamentally animalistic, not able to live on our own. So that means that we need each other. And instead of designing and automating the need out, we might say, where's the need? Actually, where does it belong kind of in the exchange? So let me give an example. In the insulin pump space, is really interesting, I taught a grad seminar a bunch of years ago now at RISD in Industrial Design for graduate students. And one of my students took up the insulin pump as a kind of object to take a look at again. And her first pass was like, here are some fashionable skins for the insulin pump that make it a little more friendly to fashion and wearability right in that kind of destigmatizing way. We see this in prosthetics all the time.

Lee Moreau
Almost like a camouflage.

Sara Hendren
That's right. Making it elegant. It's like eyeglasses have gotten this treatment. They've become fashion. They've exited kind of medical gear. And so that was her first pass. And I sort of said, you know, I think there's something else here. I think you should keep digging. And she went back to kind of her conversations and interviews with people who use insulin pumps. And she heard from them that the awkwardness a lot of times arose for them around trying to explain it to people who would say, is that a beeper, or do I need to worry about you? Or, what is that thing? Or, maybe I won't — I'll studiously not ever ask about that thing. And that it was a barrier kind of to a friendship forming like in its early stages. So her second pass, which was really great, was designing a process by which the person who's using an insulin pump would select a friend, and the two of them together would go through a process of selecting that skin, that wrapping, that, the accessorizing the insulin pump and the process of making that choosing social would open up the space for the friend to be able to ask questions that they might not otherwise ask. And for the insulin pump user to kind of, you know, in a natural way, explain what is the function of this thing, what does it do, what does it not do. What, you know, you don't have to worry or you do have to worry if this or that happens. And that to me felt like a much more— she was designing toward the social quality of the thing and to the-the kind of environment into which it would enter.

Lee Moreau
What I think is remarkable about that is that kind of leap, it makes you think that care is life and care is inherently social. And without that social aspect, we can't actually live.

Sara Hendren
That's right. I mean, we were taking that exploratory kind of approach. I mean, on the one hand, you can imagine this as a product or service maybe, but really I think its work is more cultural provocation. It's much more to get us to think. Young designers listening to this, I hope you will know, right, this is a path open to you. You can design some things to think with, to say, yeah, what is the status of care, caregiving and could we design it better?

Lee Moreau
I think we're- we're — I'm seeing work shifting is where the social is actually being augmented by artificial intelligence and the assumption that that will allow us to have more social interactions without having more people involved and the sort of efficiency around that which makes me nervous because I have yet to see a kind of embodiment of one of these technologies that actually feels real. That's the kind of conversation I think that we're starting to play or exist within right now.

Sara Hendren
I think that's right. And I mean, what you're talking about with with AI is sort of people go, okay, what's the what's the model? The model is automate with a human face, you know, mimic actually the kind of socialit,y mirror the sociality of the human. But it's a different project to say, assume the dyad of the human right. Assume like a two-ness or a three-ness or a foreignness to somebody's meaningful life. Okay, design the envelope around that. It could be digital, it could be material. But don't presume right. That you're going to stand in. It is still a replacement model, what you're talking about the kind of call center chat bot. It doesn't matter if it has a simulacrum of the social right. I mean, when there is an acute condition of the body, there's always an adjacent ecosystem of caregiving. That's your design space. Just fundamentally assume that that's all part of it. So think then again about envelopes around that rather than having to swap out one for one.

Lee Moreau
Yeah. And I think what I'm seeing is rather than a concentration on the care space we have a concentration on, here's a new technology that may be able to be used in a caring environment and may suggest touch. But we start to get very caught up in technology very quickly and we start to lose the theme, which is basically like administering care or making creating a caring environment.

Sara Hendren
I will say that I just wrote a piece, long piece for Wired about smart home tech and independent living for adults with cognitive disabilities. And we can put a link in it, maybe on the show notes if people are interested. I am actually optimistic with caveats about that whole deal about using technology, remote support and kind of proxies, but really proxies that keep people connected.

Lee Moreau
The Futures Archive is brought to you by the design team at Automattic, which is building a new web and a new workplace all around the world.

Jasmine Ho
My name is Jasmine Ho. I am currently located in New York City and I am a brand and creative designer on the Tumblr marketing team at Tumblr and Automattic.

Lee Moreau
Even before Jasmine joined Automattic, she was already a part of the Tumblr community.

Jasmine Ho
I guess I kind of came into Tumblr around middle school time for me. So it's been a, it's been quite a long time. Yeah. And I guess in a way, it was like my childhood growing up with those platforms and seeing the change happen as I've grown up. Before coming to Tumblr, I didn't really associate the product with humans, humans working behind it, and to be able to be a part of that coming into Tumblr was a huge blessing for me because I was able to transition into it really easily and being able to use my prior knowledge on the Tumblr platform and I guess in a way advocate for the user base, as one of the users has been very eye opening. There's always been a need to hear what our users have to say about the platform. And what I love about working here is that I get to be part of that conversation, and it's just honestly fun. It's really fun to design for Tumblr and designing for Automattic.

Lee Moreau
Designing a better web. Join us at Automattic dot com slash design. That's auto-m-a-double t-i-c dot com slash design.

Lee Moreau
So this notion of persistent care, continuous care and creating environments of care which may or may not be a shared activity, this is part of designing with our daily lives, and it's about designing with or, as you said before, bumping up against those other systems that we exist with in.

Gianna Marzilli Ericson
My entire career has kind of been either bouncing back and forth between the two or trying to find ways to combine a real interest in health care, which actually is not unrelated to my experience with diabetes and a sense that design is something that I enjoy thinking about and that I'm good at doing.

Lee Moreau
Gianna Marzilli Ericson is a UX designer and service designer, and I know her as another fellow practitioner in the design community here in Boston. And I really wanted to talk to Gianna because she has this incredible experience where she herself has diabetes and has used herself as a case study on her own experiences with insulin pumps and her experience with constant glucose monitoring, or these CGMs.

Gianna Marzilli Ericson
You've got an insulin pump and a CGM system that's beeping all the time, constantly alerting you, waking you up in the middle of the night, waking your partner up in the middle of the night, waking your kids up in the middle of the night, interrupting your work meetings, outting you as a diabetic. If you don't want to be sharing that information with the people you're with, or at very minimum just annoying you all the time. And pump manufacturers and CGM manufacturers have a captive audience. So there have been times in my 23 years of having diabetes that I have stopped using my continuous glucose monitor and gone back to fingerprints and strips only because the beeping was just out of control, the constant interruption. I like to joke that you should ask my husband which one negatively affects your sleep more a CGM or a newborn, because he's experienced both. And I'm pretty sure that the CGM was worse at times.

Sara Hendren
Uh, right. I mean, what a tell for, you know, for medical, biomedical engineers and designers everywhere, right. Like everybody knows a newborn waking is an exquisite form of torture. So if you're if you're machines that are supposed to actually be helping you are, you know, beeping, beeping away. What to make of that?

Lee Moreau
But that beeping is really important, right.

Sara Hendren
Yeah.

Lee Moreau
So...

Sara Hendren
...Yes.

Lee Moreau
It's it's telling you like something needs your attention and has the utmost importance right now.

Sara Hendren
Yes.

Lee Moreau
Here we go. Let's let's get on this. And it's like the seatbelt in your car that beeps when you don't have it fastened. It's annoying on purpose that there's a reason for it.

Sara Hendren
This is true.

Lee Moreau
We don't want to take that away.

Sara Hendren
Right. That's right. No. And here's where I wonder if folks are looking at, oh, what, you know, accelerated haptics or something or like there are there are really different qualities of beeps. You know, there are shrill beeps and there are kind of friendly beeps. And think about the difference in how you honk the horn depending on the day and your mood like the, there there are subtleties to all these kind of interfaces.

Lee Moreau
I do think this is a design opportunity and I think if we were a little bit more mindful about the context where some of these signals and noises and alerts were happening, maybe we'd think about this sort of orchestration of our environment a different way. That's why we need service design.

Gianna Marzilli Ericson
Broadly speaking, service design is the field of solving problems that may not be completely manifested in physical products. And I think we all have an intuitive sense of what it means for a service to be annoying to use as well. But I think we don't as often think about the fact that those experiences that we go through when we use a service have the ability to be just as thoughtfully designed as a physical product.

Lee Moreau
So she's talking about sort of coordination or orchestration of all these processes that happen in our material world and impact or interact with the things around us.

Sara Hendren
That's right. Service design is always about a kind of quality of an experience that's unfolding usually in time, and it needs its own kind of attention. You want something to feel what friendly and approachable, reassuring and warm, professional and reserved in a proper way. All of that is designable. If you're talking about services at the ATM, services at the airport, and she's talking about it when it really matters the most here: services for using and interacting with a series of professionals who are also interested in what your insulin pump is telling you, and then you yourself monitoring it over time. And then the people again, those caregivers in your life.

Lee Moreau
The state of reassurance, I think, is such an important thing that we don't talk about enough, right. So we talk about here's an alert, get ready or take attention or you know something, something's wrong. It's feels very binary. But the state of reassurance is a kind of just a gray zone of comfort. Gray in the most beautiful color, gray.

Sara Hendren
Yeah, I think that's right. I think that's right. But again, for medical stuff and around disability, the stakes are just really high because you're talking about people already needing to think about something that other people have a stake in or misunderstanding or that maybe you're worried about worsening over time and again being specific and depending on who you are. So all of this really matters because it has to do with the daily flow of your life and then also the quality of your interactions with people.

Lee Moreau
And if we don't get these services right, we create experiences that are incredibly annoying. Like, you know, Gianna is going to take off her her insulin pump. She's going to take off glucose monitoring because it's just like super annoying. And that's something that's meant to provide care for her.

Sara Hendren
That's right.

Lee Moreau
How do we stay mindful of that and not lose sight of that as we're working on more and more increasingly complex systems?

Sara Hendren
Yeah. I mean, I think just to go back to that that subject that I've just been researching about remote supports and smart home tech for, not just for adults with cognitive and developmental disabilities, but also for elder care, as is a huge space of design right now. It does make me think that— I heard this from interviews that I did for that piece, that the human staffing service model right now of caregiving may need to come in the future with a kind of layer of certification in tech support, in troubleshooting, in kind of assisting when the systems break, precisely because it's a really interesting open space that prosthetics and assistive tech can be something like you get at the Container Store, like a sensor augmented trashcan. It can be a tablet automated microwave, it can be a smart oven. Those are in the mainstream marketplace, but they're going to need to be supported. The services, in other words, are going to need to be augmented by not deep expertize, but facility and literacy nonetheless. I mean, this is where like scholars will say, stop talking about automation as like the replacement of the jobs and the future, right? It's not that 1 to 1. It's much more about knitting together human and machine partnerships. Again, whether that's a good story or a bad story, highly dependent on the context. But we're really talking about sewing up the seams between humans and machines a little more closely.

Lee Moreau
I'd like to think as designers, we're getting smarter with ensuring that the technology does a little bit more of what the technology is supposed to do, and the humans are doing what humans do best. I think every day we get better at that and we get smarter at that. But meanwhile, there's this constant flow of new tech that is coming onto the scene that we have to be mindful of, integrate, be educated on, and actually help to teach normal people how to adopt those technologies into their lives. That's so much of what we do as designers is help people introduce and translate technology into their life. So maybe live life in the space of reassurance, not in the space of the alert.

Sara Hendren
Yeah. Yeah, I love that, actually. I love that, actually, because reassurance is a that subjective affective quality, but it's also about expertize. I am in good hands here, technological or care or otherwise. But that's beautiful. Because I think care like care I, I was hearing this from design students of spring. Yes. Care. What does that mean? Right. That that's I think that's become a little bit of a buzz word that we sort of like gesture toward. And I think, okay, take seriously what that means. Right. I mean, philosophers, again, talk about dependance as fundamental in the human person. Like, think about what that that's a metaphysics of meaning. That's not just a kind of description of animal processes. So sorry, just a riff on that. I think actually reassurance is something more sharp than care in a nice way.

Lee Moreau
I do, too. We're going to continue talking about this, I have no doubt, but to take us back to the insulin pump. Let's hear a little bit more from Gianna again.

Gianna Marzilli Ericson
Of course, humans weren't meant to constantly pay attention to the same thing continuously forever, but that's what having a chronic condition would sort of ideally require, right? So I think in terms of designing for that, the ultimate goal is to really take the burden off of the person with diabetes, in this case, we were never meant to imitate the functions that our organs are supposed to perform automatically. And so the smartest human brain on the planet could not be a pancreas as well as an actual pancreas can. And so ultimately we want systems that work in the background and that only need to alert us and make us pay attention when there's a problem so that we can briefly focus on that problem and address it hopefully, and go back to living our lives.

Lee Moreau
So how do we go about designing for consistent care with people that are like by definition inconsistent, right? And whether that's they're inconsistent in their willful acts day by day, but also inconsistent in the way their bodies function.

Sara Hendren
Yeah. I mean, probably one of the reasons why biomedical design is so is so specialized, because you do have to think about tolerance for error. That is actually a universal design principle in disability studies, tolerance for error. And I'm sure the insulin pump in all of its materiality has to plan for that. What happens if it gets wet? What happens if you drop it? What happens if you drop it ten times? What's the whole trajectory that this thing has to go through and let's plan on this kind of imperfection. But the reassurance, like you just said, Lee, you know, Gianna is telling us something which is like, I'm not going to be nor should I be kind of adopting the automation of the machine. It shouldn't require me to mirror it. It should actually do its job in this way that's not fully separable. But has this kind of companionate quality.

Lee Moreau
Yeah, I'm not going to be perfect. Please accept me as I am.

Sara Hendren
Yes, that's right. That's right.

Lee Moreau
So one of my real interests actually in the insulin pump is that when I was at Continuum, there was a design team that was actually working on the insulin pump. They introduced it, I think, almost a decade before and we were still doing some design work on further versions of it. And we're going to hear a little bit on that.

Aaron Oppenheimer
Although we wanted to change the experience of using the pump, we still needed all the functionality to be the right functionality.

Lee Moreau
Aaron Oppenheimer is an engineer and designer, and from 2000 to 2009 was the head of the product behavior team at Design Continuum, where he worked on the creation of the Omnipod insulin pump.

Aaron Oppenheimer
Designing medical devices is challenging because there's risk involved. The real risk that that we felt in developing this thing was that it looks like a computer. It's of course, it's doing the right calculation and giving me the right amount. And what we were really doing was encouraging the patient at every turn, maybe don't trust us, or maybe check — you know, you told us your glucose an hour ago and we adjusted your your dose of insulin, maybe check it again now.

Lee Moreau
So whether it's in your own professional work or in the classroom, this notion of designing for risk or in a risky context, how do we-how do we go about engaging this?

Sara Hendren
Yeah, risk. I mean, we have to plan for risk and we're talking about medical stuff and we're talking about caregiving for vulnerable populations or marginalized populations in that vulnerability. I think maybe the danger is in thinking of risk as the only value. I mean, one of the things that the insulin pump has to serve is the quality of being enough of an everyday device to set people free to go about living. So that's another it's part of that kind of reassurance matrix. I guess it's like risk means that it needs to do some things with a bright line of doing them well or failing, and we need to know when those bright lines come up. But it's also that risk, in other words, preserving the safety of the user can't actually be the only value there. We have to take that on and say this person can't be, as Gianna said, a machine. This person has to be able to move and misplace and all kinds of kind of everyday mishaps, you know, with tools and technologies, because they have to get on with living their definition of the good life.

Lee Moreau
If I'm understanding you, it's almost that the the system and the user in this case, the patient, have to be able to manage risk together.

Sara Hendren
That's right.

Lee Moreau
And then have it not be so front of mind that it's not an empowering experience, because that's the magic of these devices, is they're incredibly empowering and they really are able to change the way people manage their condition.

Sara Hendren
That's right.

Lee Moreau
So let's hear a little bit more from Aaron about how he thought about designing the interaction between the device and the person that was using it.

Aaron Oppenheimer
When we say like a product is difficult to use, almost always what that means is this product was designed so that the interaction is not like interacting with a person. It's interacting with something that's not acting like a person. If I had somebody follow me around giving me insulin, depending on my blood glucose, what would that conversation between me and that person be like? And now, how can I embody that in the user interface of this device to ensure that you're as comfortable with the interaction as you can be?

Sara Hendren
Yes. So good. I mean, Aaron said it so well. Right. I mean, this is where human centered design, I think, requires that, you know, good strong ethnography across a variety of users and listening really closely to the signal behind the signal, I think we've talked about this before. In other words, you don't just do that like I think a lot of designers, maybe young designers are thinking, well, if you empathize and you walk through it yourself and you do the user journey first principles from your own kind of assumptions, you're not going to learn everything that you need to learn about what it would really be like to have that conversational quality. You've really got to look closely and you've got to do enough variety, you know, kind of in your user testing to make good sense, not because every device is going to be different, but precisely because you're trying for that ineffable quality. Like Aaron says, you know, if you're not a machine, how can you make the quality of the interaction less machine-like?

Lee Moreau
It's basically a design exercise, right? Like you can imagine in the classroom, in the studio, okay, this thing that we're designing, you're going to pretend to be that thing and deliver the experience throughout the journey. And I don't think we do that enough in the development of products and services, that sort of level of almost human embodiment of what the machine is or the thing is supposed to do for you.

Sara Hendren
Yeah. And we also just don't spend enough time letting students talk in an open ended way with people about the way something shows up in their lives and then how to make sense of all that messy qualitative data. I mean, it's just really it's really hard.

Lee Moreau
So Sara, let's sort of ladder up from this into a more social context.

Christina Harrington
My research focuses on how design can kind of bridge us from, you know, the world we live in now to the world we could live in if we were to center the voices in the lived experiences of more marginalized individuals.

Lee Moreau
Dr. Christina Harrington is designer and qualitative researcher teaching at the HCI Institute at Carnegie Mellon University and is also the director of the Equity and Health Innovations Design Research Lab.

Christina Harrington
It looks at how we can think about the design of technology and spaces and products and systems and interactions to be more equitable in both the areas of health and racial equity. And it considers who gets to design. It considers what is design. How do we define design when we're thinking about what design could mean to various communities.

Lee Moreau
So if we think about this notion of management that we were talking about at the beginning and the sort of management of of care, access really has to be part of that conversation. Like who has access to it? How is that enabled and unlocked? And then also, as you were saying before, like, what is that, the dyads and triads and the communities that are delivering it?

Sara Hendren
Yeah. So it makes me think, Lee like if we were talking about how care is maybe a little too diffuse and airy and broad, that reassurance might be one sharper feature of that. I wonder if demystifying is another feature here, right, that that Christina is trying to, you know, ask us to do. In other words, what are the ways that we might make health care and our involvement in it a little more friendly and approachable, like a little more welcome? And all of that is, I think, potentially designed as well. I think Christina is probably also talking about just, you know, what right now is sort of support groups and information, knowledge sharing and stuff for people who have certain kinds of conditions and maybe especially certain kinds of conditions that affect different groups across racial lines or other sort of unifying categories that may be overlooked sort of women's health care in the way that it presents differently in cardiac care, for example, than men's and the under-researched kind of attention to that, right. Isn't that what Christina is sort of inviting us to do, to think about those distinctions?

Lee Moreau
Yeah, I think she's saying, let's start with the people that that are, as you're saying they're on the ground they're in the room, they're the people that aren't frequently asked their opinion about how they want to either manage a circumstance or be cared for. You know, we know that they might need some form of care, but how do they need it and how do they want it to be delivered? I mean, I think we've only really begun to start doing this work and partly in the health care environment and the medical field, because it's so regulated, it's so complex, it's really tricky. And as we were talking about before, there's a lot of risk there, too. So Christina really focuses on participatory community design when working through new technology development and how that gets inserted into the equation.

Christina Harrington
I build around the interactions that people have with technology. There's a lot of participatory action work that happens there. How do we engage people telling us what they need or where they are in a particular process? All of that is kind of a part of that, focusing on the interaction that's less less centered around hardware.

Lee Moreau
So yes, the hardware is important, but none of it matters if it's we're not designing for the way it's going to fit into people's lives and she used the phrase participatory action work as a way to say that this is not just like design research. It's actually change making through design. That's the implication that I'm hearing from that.

Sara Hendren
That's the application I hear, too. Although I will hasten to say as well, another success of participatory action work could just be trying to alert the designers and engineers in the room, what is the moment at which design stops being the tool that you want? Right. So if you're in that context and you're naming things that tend to indicate policies and economics a little bit more, you might say, okay, well, here's what design might be able to address when we're getting to those bigger systems. But here's where my work as a civic actor might be more effective. And I think for for the non designers in those rooms, maybe the biggest takeaway could be just the broadcasting that that the policies and systems of the world are maybe more malleable than you think. You know, that you might be able to affect what happens in the standard of care at your local children's hospital if you're a frequent visitor there because your child has a chronic condition or something that you know, that, oh, wait, oh, wait, hold on. The seams are a little bit, you know, kind of unraveling here. If people are asking me what I need, that means that it could be a little bit different than it is. Right? Not that. Again, we talked about this in the last episode on refrigeration — like it's a myth that participatory action work is going to yield a 1 to 1 gadget widget solution that you custom ordered in the session, that that is not actually the outcome, nor do I think that's even in most cases the success of the outcome. I think what Christina is saying is that there's a there's almost like a a mix of both design possibilities and old fashioned consciousness raising, I mean.

Lee Moreau
Awareness building, right?

Sara Hendren
Yeah. That that these systems exist and that they might be otherwise and that new partnerships and networks are formed. There's a big delivery here that Christina is talking about that supersedes, I think, just design.

Lee Moreau
So in this conversation, we've gone from the topic of the little insulin pump that many people have to have to wear in order to monitor and maintain their health. But we've kind of expanded into a conversation about care with, you know, maybe with a capital C, and this is sort of continuous and persistent care. And the conversation about, yes, technology can help us like this insulin pump is remarkable, but care is a much bigger thing than that.

Sara Hendren
Yeah, that's right. And here again, I would say to designers, you can both think in the tools and technologies about instead of thinking of automated substitutions, always you could think about envelopes around existing practices and expertize that people have. You could think about technology as a form of accompaniment, right? You could think of technology as a form of mitigating condition, for sure, monitoring. But again, accompaniment is also a really interesting idea for design that that care, in other words, suggests other verbs and nouns, I think, than than the purely functional and the efficient. I mean, Sloan said this before that efficiency is not automatically equal effectiveness. And when you are trying to manage a condition over durations of time that the qualitative counts as as much as those things you can quantify.

Lee Moreau
I'm glad you're invoking the kind of increasing pace of technology a little bit because I think we see it all the schools that we've taught at— Olin, MIT, Northeastern, RISD, there is just this sort of sense of like, Oh, we have to assimilate technology into the future of care as quickly as possible. There's a constant friction that's occurring in those conversations. I think it's hard for us to like keep asserting the human solutions in this. I do think that's why you and I are in institutions like this kind of waving the flag. But it does feel like we are facing a bit of a tidal wave too, at times.

Sara Hendren
It does. I mean, I, I don't know. I don't- Lee, I feel conflicted about this, meaning the historical newness of it or not. Right. If you look back, you will find people sort of feeling deluged, you know, by whatever tidal wave is coming their way. And I do feel like we are there's no question that the Internet and its ubiquitous computing effect on our lives is a difference on the scale of something like Gutenberg and the printing press in ways that we still don't understand now. But I also think the invitation has always been there for us to say it's kind of the old machines for their own sake and the distractions that they bring and all that. I mean, there's just no there's no getting away from the foundational questions of like, how will I know if this thing is an enhancement or not? Again, this is a little bit embroidering on the insulin pump, which is necessary, and so pragmatic and important. I mean, all day long, I will wake up and say I'm intersted in better tools and technologies, better in the efficiency sense. And as you say, given the panoply of choices, given AI, I mean, that is that- talk about a big question about its newness. How are we going to evaluate it? We're just not going to know for a little bit. But we will always be confronted with these questions about about the good life and technology's role in it, I think.

Lee Moreau
And I think where technology is really helping us in the in the realm of service design is is in coordination. So when we're talking about the complexity and the coordination and orchestration and bringing all these things together, that really couldn't be done without technology. And as you said, the Internet is probably the key aspect of helping us fulfill some real potential and promises that we've been telling ourselves for a long time, oh, we can get better at this. But actually we have-we're beginning to have the tools to do it. The question is like, does it feel like care? Does it feel like reassurance in the end or does it feel like something else?

Sara Hendren
Yes, that's right. Does it feel like a substitute, a proxy for experience and where experience is enduring and lasts, right, our sociality, our dependencies on one another. Our need for human scale limitations. You know that that only connect an infinite exponential scale. I think the evidence is clear. Right, that that's not actually a net positive. But that to me is can be as optimistic a story as you make it, right. That means returning to those enduring qualities and designing around and for it.

Lee Moreau
Have you thought at all about what our thought experiment could be for this week? I mean, we went pretty broad.

Sara Hendren
Yeah, but I think I'm just returning to— because I've never forgotten my student's insulin pump for social exchange projects. And I wonder if people, if they're interested in the thought experiment, might think about taking a standard issue kind of every day medical technology. So anything from a foot brace to hearing aid to a CPAP machine, to even, you know, a box of pills that has to be taken on a regular basis, extract one orbit out from that and think about somebody you live with, a roommate or a family member, someone you have to engage in a social way who's a non-expert in your own kind of bodily care, whether it's just trying to build a relationship and become more intimate and become comfortable with this medical thing in your life, or to explain what it is and do the diplomacy and manage other people's expectations or the ways you need to ask for help. Think about that as a service and how you would design for that orbit. So not on the object itself, but what happens when that object becomes a social node between people? I think that'll be interesting maybe for folks to think about.

Lee Moreau
I love that. Thank you, Sara. It was great chatting with you.

Sara Hendren
You too, Lee. Great to talk to you.

Lee Moreau
The Futures Archive is a podcast from Design Observer. To keep up with the show go to TFA dot design observer dot com or subscribe on Apple Podcasts, Spotify, or wherever you listen to podcasts. And if you liked what you heard, please make sure to rate and review our show and shared with your friends.

Sara Hendren
You can learn more about me at Sara Hendren dot com. My book is What Can a Body Do? How We Meet the Built World, it came out from Riverhead in 2020. I have a newsletter. It's called Undefended Slash Undefeated at Substack.

Lee Moreau
The Futures Archive is brought to you this season by Automattic. Thanks again to Jeff Bennett, Gianna Marzilli Ericson, Aaron Oppenheimer, and Christina Harrington for talking to The Futures Archive. You can find out more about them in our shownotes at TFA dot design observer dot com along with a full transcription of our show. Our producer is Adina Karp. Owen Agnew edits the show. Thanks as always to Design Observer founder Jessica Helfand and to Design Observer executive producer Betsey Vardell.


Posted in: Health + Safety, Product Design, The Futures Archive



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