In this episode of Designing for Health, Craig Joseph sits down with Dr. Stephanie Carreiro, an emergency medicine physician and medical toxicologist at UMass Medical School, to explore how digital health tools can be thoughtfully designed to support people with substance use disorder.
Dr. Carreiro shares her journey into toxicology and addiction research, and explains how wearable sensors, mobile apps, and digital biomarkers can detect stress, craving, withdrawal, and other physiologic signals related to substance use. The conversation covers everything from wearable design pitfalls and privacy concerns to the idea of “digital dosing,” peer recovery coaches as key users of health data, and why empowerment not enforcement must be at the center of addiction technology.
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SHOW NOTES
[00:00] Intro and welcome to Designing for Health
[01:05] Dr. Carreiro’s background in emergency medicine, toxicology, and addiction research
[05:00] Using digital health tools and biomarkers to detect craving, stress, and withdrawal
[10:30] Wearables, privacy, stigma, and real-world design challenges
[17:00] Co-designing with people with substance use disorder and learning from lived experience
[23:30] Digital dosing, intervention fatigue, and finding the right level of engagement
[28:45] Peer recovery coaches, empowerment vs. surveillance, and real-world impact
[29:54] Dr. Carreiro’s favorite well designed tool
TRANSCRIPT
Intro:
Hello and welcome to the Designing for Health podcast. I’m Nordic’s Chief Medical Officer, Dr. Craig Joseph.
In this episode, I’m joined by Dr. Stephanie Carreiro emergency physician, toxicologist, and digital health researcher at UMass who’s using everyday tech like Garmin watches and smartphones to tackle one of healthcare’s most difficult problems: substance use disorder.
We dig into “digital biomarkers” that can detect stress, craving, and even opioid withdrawal in real-world settings where clinicians can’t reach, then use that signal to deliver timely, supportive interventions. But the real leadership takeaway is design: building for the devices people actually have, avoiding stigma, treating privacy and geolocation like radioactive waste, and figuring out the right “digital dose” so your app actually gets used.
Bonus: why the best “dashboard user” may be a peer recovery coach, not the already-drowning prescriber.
Let’s plug in.
Craig Joseph MD, FAAP, FAMIA:
Doctor Stephanie Carreiro, welcome to the Designing for Health pod. Where do we find you today?
Stephanie Carreiro, MD:
I’m in Worcester, Massachusetts, or just outside Worcester, Massachusetts.
Craig Joseph MD, FAAP, FAMIA:
Awesome. And that’s a place that you work and reside. I’m assuming.
Stephanie Carreiro, MD:
Correct. I work at UMass Medical School.
Craig Joseph MD, FAAP, FAMIA:
Excellent. So and so my understanding is you’re an emergency medicine doctor. And then you also did a fellowship in medical tech stocks ology toxicology. I don’t even know what it is. It sounds like it has to do with toxins and poisons. Why don’t you tell us a little bit more about this? Is this something? Have you always wanted to be an emergency medicine doctor?
Stephanie Carreiro, MD:
No. I actually went to medical school thinking I was going to be a pediatric oncologist or a doctor who takes care of kids with cancer. And I fell in love with emergency medicine. And as a medical student, it is fast paced and incredibly gratifying for someone with ADHD who likes to keep moving. And so it was a natural fit for me.
But during the course of training for emergency medicine, I sort of felt like something was a little missing for me. So there’s some component of patient follow up and sort of being, having a really specialized area of practice that I was I was grieving a little bit. And I found that in toxicology. And so toxicology is actually the specialty that focuses on, as you mentioned, toxins and poisons.
But, in our current world, the most common toxins and poisons are actually recreational drugs. And so we work a lot in the addiction medicine space as well.
Craig Joseph MD, FAAP, FAMIA:
Okay. It’s funny. We’re the opposite. I went to medical school to be an emergency medicine doctor, and then did a month in the emergency room and decided to become a pediatrician. So, I’m glad there are, I’m glad you exist. And because you’re doing work that I find difficult. It seems to me a lot of boring. Boring?
Someone trying to die. Boring, boring, boring. Someone’s trying to die. And I was like, I’d rather have it be kind of more. More steady. Well, that’s interesting. So tell us about some of your research. I was particularly interested in the patient population that you work with and, and especially appreciate what you’re saying about the most common toxins are actually not poisons that are recreational drugs.
And so some of your research goes back over well over a decade. And, you know, why don’t you kind of just tell us about what you’re interested in studying and what are some of the things you started studying back in. I think it’s 2014.
Stephanie Carreiro, MD:
Yeah. So as I became more and more interested in toxicology, and decided to make research a part of my career, I ended up focusing on the addiction space because it was so pertinent to what I do clinically and what I see every day in Ed, which is patients coming in with consequences of substance use disorders who either overdose or withdrawal, or other complications from use that are make their life really difficult.
And so I started working on, problems related to addiction. And I sort of, by accident, ended up in the space of digital health, mostly because of one of my mentors was working in that space. But he found it really fascinating. So what I do is I use digital tools, which have evolved obviously over the years as they have in the rest of society, but mostly wearable sensors, mobile apps and some other, off body sensors like sensors that sense in the environment.
And we use that data to predict digital biomarkers or and user generated fingerprints, if you will, and that digital data that tell us things about substance use disorder that help us predict. So I like to describe it as the same way that your Apple Watch can detect if you are sleeping or exercising or standing or falling. We use that kind of data to predict whether people are breathing drugs, whether they’re using drugs, whether they’re withdrawing. And then most importantly, we try to use that data to provide value and help them, help them recover.
Craig Joseph MD, FAAP, FAMIA:
So first of all, that’s amazing. And I love that concept of digital biomarkers, which we all have because we all have digital devices that we carry or wear, pretty much all of us. And so we’re generating those data, whether anyone does anything with them or not. And so it sounds like the idea is that you’re able to predict.
And I’m interested in learning more about how you’re able to predict. So you but you’re able to predict that, hey, this person might be craving drugs. And so that that’s a point to try to intervene right there. I’m assuming once you get to a sophisticated enough level. So how does how does that work? What signs might I be giving on my phone or on my watch or some other wearable that leads you to think that, I’m about to abuse drugs?
Stephanie Carreiro, MD:
Actually, it’s a constellation. So there’s no one feature. Feature is sort of the term that we that we used in that space, but there’s no one feature that predicts anything. But when you start to add lots and lots of features together, they can be very, very powerful. So I think a great example is if we’re detecting something like opioid withdrawal, for example, what we see in the sensors is we see that people tend to, get really sweaty.
And so they have increase in their the skin conductance. We see that the they get very fidgety and tremulous. So we can see a lot of increase in particular patterns in the way that they move, specifically that they’re tremulous and restless. We see an increase in their heart rate and a decrease in heart rate variability. And sometimes we can couple that with other signs.
So for example, Sometimes people are more likely to experience particular symptoms or particular states in certain locations that really works for craving. We also can look at the way that people are interacting with other with others on their phone, and sometimes, again, that can predict, receipts.
And so all that data kind of comes together and we can make a prediction. And the great thing is that we can do the this in environments that typically clinicians couldn’t reach. Right. So typically you don’t have data or the ability to reach out to your patient when they’re in their home, or when they’re in the community places they’re at highest risk.
But in this case, we can. And again, where I think the value comes is not knowing what people are doing, but really being able to do something about it. So you can send supportive interventions. You can ask them if they want to talk to their sponsor or, a trusted person, remind them of what’s important to them. And that’s different for every patient. But sometimes those kind of nudges can really help people get through difficult times.
Craig Joseph MD, FAAP, FAMIA:
Yeah, well, it sounds like the timeliness is a is the game changer there. You know, when people are feeling fine, reminding them of their support system and other commitments that they’ve made is one thing. But when they’re not, it seems like that could really move the needle. So, for these wearables and obviously we’re talking about a cell phone would be one it’s not a wearable, but something that we have.
Are you generally just kind of using in your research off the off the from the store or an Apple Watch, or are these things that you’re, you know, you’ve custom designed and, I’m interested in kind of how do you get them to the to the research participants?
Stephanie Carreiro, MD:
All the above. So some of the studies we’ve done, we’ve done them on off the shelf consumer wearables, things like Garmin devices, they can be really inexpensive. And that data is actually sufficient. So for example, in a lot of our work detecting craving, we can use just the street accelerometer and heart rate AEDs from a typical Garmin sensor.
And people tend to prefer that. So it’s really it’s very important to, you know, to be able to deliver these intervention interventions in a way that is not obtrusive, that doesn’t flag any sort of stigma or concern, and people really like that. So we often use off the shelf sensors. We are developing some custom fabricated sensors, particularly for in-hospital use, that are a little bit more tailored to what we’re doing.
But again, we’re very mindful in the design of the fact that substance use disorder is a stigmatizing disorder, and we don’t want to add to that. So historically, when we first started building these digital biomarkers, we worked a lot with research grade sensors, which tend to be a little bit more bulky. They tend to be a little bit a sort of less esthetic and streamlined.
And we had some really interesting experiences, that change our mind. So we had one participant, and this was an probably around 2015 or so. So this was before smartwatches really became, you know, popular in commonplace. And our participant was a taxi driver. This was again, I think also Uber. And our participant said that some of his clients were nervous because they thought that his wearable sensor was for a study.
They thought it was a house arrest bracelet. So they thought that he and he had escaped somewhere and was in trouble with the law. And it was really interesting to us, because it’s probably not something that would necessarily be an assumption for us if we, as health care providers were ruling a device and even it or it might be a joke.
But for this person, it was it was serious, right? It was it was very uncomfortable for him. And essentially his livelihood does his job right. And so, so over the years we’ve thought a lot about how do we how do we deliver these services or these interventions in a way that is discreet and protect people’s privacy, and does it perpetuate stigma?
Craig Joseph MD, FAAP, FAMIA:
And, just to explain, for some of our listeners, a taxi is a thing that we had before Uber and no. All right. Most of our listeners probably know what those things are. Well, so that’s interesting. That is not something that you would have thought was a problem as you were kind of designing these research protocols, or at least what I think that’s a that’s a common misunderstanding.
And some of your research, you’ve talked about this, this concept of self tracking culture of, of the of, you know, folks who do this, who want to know what’s going on with themselves and using multiple different ways of tracking. But, one of the assumptions that is often made is that, well, if you have an Apple Watch, all I need to do is give you the Apple Watch, and that should be fine. And you’ve learned probably the difficult way that that’s not always fine. So talk to us about some of the some of the design implications that you have to kind of consider when you’re doing research.
Stephanie Carreiro, MD:
Yeah. So again, working with people with substance use disorder is, is interesting because they face a lot of challenges that these are only overlap with other parts of the population, but potentially a more prevalent in, in people with ASD. So, for example, many of our participants are unstable, housed right. Or they’re moving place to place. And so they don’t always have necessarily a place to charge their phone or consistent Wi-Fi.
There has been a lot of sort of pushback when we initially initiated these types of projects, particularly people with study, that our participants may not have access to cell phones, but we found or smartphones, I should say we found that that’s actually not true. The majority of them, even those with housing insecurity or food insecurity, have a phone.
But the types of all they have are quite different than perhaps some of the phones that the apps are built on. And by that I mean that a lot of our participants with substance use disorder will use what are sometimes known as feature phones until they are smartphones, but they have a much lower, possessing capacity, for example, and memory, than something like an expensive, shiny brand new iPhone.
And so initially we were building these apps to be optimized for, you know, the latest iPhone or the latest Samsung Galaxy or sort of high level Android phone. And we would ask people to install them. And we thought this was great. They have a phone, no big deal. And when they installed them, the apps would either completely drain their battery or crashed on the phone or basically create a terrible user experience.
And then none of our participants would want to continue using the app. And it took us a little while to actually figure out what was going on. But again, I think if we just if we if just ask people upfront what kind of devices you have and built for that potentially could have avoided some difficulty. But lesson learned.
And so we’ve actually changed the way we design our apps now so that we design them first so that they can optimally run on very, you know, sort of simple, inexpensive feature phones. And then we start building optional features on top of that. So if someone happened to have, an iPhone with more capacity, they can engage in more features.
But again, I think this really speaks to the idea that if you build a tool, it doesn’t matter how sort of fancy the engineering is or how complex the algorithms are, how exciting they are, if they if they fundamentally don’t fit with the lifestyle of the people that you intend to use it or that you’re trying to help, then it really doesn’t matter because they can’t, it’s not accessible to them and they can’t use it.
So we’ve really kind of flipped and you sort of it talked about this a little bit before, but much of my research has shifted from just focusing on the math and the algorithms behind the digital biomarkers has really focused to engaging the population that that we’re trying to help, which is people with study and really involving them in every step of the design process so that we get this right.
Craig Joseph MD, FAAP, FAMIA:
So I was joking about taxi cabs, study substance use disorder. Talk about let’s talk about what some of your users have told you. So there was a there’s a quote that I, I’m, I’m fascinated by, someone who you were studying, a research participant told you that they, they got robbed at gunpoint and they’d like to see their data. And so, like, I’d love the context there, and, and what did the data show? Where are you able to find it, I guess.
Stephanie Carreiro, MD:
Yeah. So it’s very interesting. So we when we started sort of this process, we were wondering if people would even wear the sensors and not only, you know, particularly, again, people who were who were actively using drugs in the community. And not only would they wear the sensors, once we again earned their trust in, they sort of understood what the goals of the study were.
Not only did they wear the sensors, but they were really interested in seeing their own data. And this one particular person had missed a couple of study visits. And then we thought we had lost contact and came back in and apologized and told us that he was that, that the reason he missed them is because he was robbed at gunpoint.
And there were all these things going on. And we were we were horrified because, again, that’s not part of our typical daily experience. And so really focus on whether he was okay and had the support that he needed. And he was really focused on seeing his data. He’s like, no, no, I want to see my data. When I was being robbed.
I want to know what was happening in my sensor data. And so, so we said, okay. So we showed him and he was really fascinated. I think it looked exactly what you’d expect the stress response to look like, which is super elevated heart rate. And his skin conductance, which is a marker of sympathetic nervous system activity, was through the roof.
And, in this case, he wasn’t moving around a lot. He was quite chill for a little while. And it was very interesting. And, you know, I didn’t make a digital biomarker of, of being robbed. I hope I never have enough data to show that. But I think the, the more interesting than the physiology, there was just the level of engagement.
And how, how interesting that was to him. And this is not a, a population I typically think about is really, so much engaged in that Self-tracking culture is perhaps other, you know, other populations are with like monitoring steps and monitoring for physical activity. But I think once we made this accessible to him and provided that data, he was he was really, really interested in that.
So it’s helped us move away from the idea of design, just designing things that we think are great and then just testing them in the population that we’re interested in. And it helps us move more toward who design, right, engaging people at every step of the way, like in the initial brainstorming sessions. What should this look like?
What kind of things would you want to see? And then sort of including this qualitative piece, we do a lot of qualitative interviews with juries, with patients who will participate and including that to kind of organically understand what they what they liked about it, what made them excited, what made them want to continue to wear it and where the value lies for that, because we can make predictions. But, you know, I, I don’t have the lived experience to know what actually matters. They can tell me.
Craig Joseph MD, FAAP, FAMIA:
Yeah, well, that’s, super interesting. And that concept of co-design is, you know, so important that we often, whether we’re designing for physicians or for patients who are suffering from certain diseases, you know, we assume we make many assumptions which turn out to not be accurate. And that in Co-designing, as you pointed out, every step of the way can really make a difference.
One thing when we were preparing for this talk, or that you had mentioned, was that the concept of digital dosing, and I’m going to I’m going to misinterpret this and I’ll have you fix my, my understanding. But the idea that, hey, we’re going to give you feedback at certain points based on what and what we’re seeing and how do we make sure that that feedback is coming in the right format at the right time? And, and can it actually do more harm than good at some point or by some method? Is that at a high level, the concern with this concept of digital dosing.
Stephanie Carreiro, MD:
Yeah, exactly. So, you know, I think about it again, I’m a toxicologist. I like pharmacology and the way drugs work and translate that whenever possible to my digital work because it’s the way my brain works. But when we tested a drug right, and new drug on the market, we have to find a dose that’s therapeutic dose that high enough to achieve the goal we want it to achieve, because we know if we give no drug, nothing’s going to happen or if we give too little.
But there’s also a toxic dose, right? And the higher we get and the, the sort of higher the risk that it’s going to cause an adverse reaction in most cases or an overdose in some cases. Right. And so in toxicology we think about the dose determines the poison. And that dose is different for every drug that’s out there.
I think the same is true about digital intervention. So if we do nothing if we provide no feedback well thing, then the chance that we help someone is, is, is low, right. Because we haven’t done anything. Or if we write too little. But at the same time, if we interrupt people constantly through their day, then essentially what happens is they become frustrated and we sort of slip from a position where we’re providing helpful information to just becoming a nuisance.
And I think that you get a couple different things. The most common is which people will just disengage, right? They’re just going to stop using it because it’s interfering or versus you could potentially exacerbate someone’s mental health problem. So you can, you know, create more stress, more anxiety, you know, more reminders of the substance that they’re using.
So I do think that there is a fine line. I don’t think just talking about substances at some point is necessarily going to going to cause harm. But I think if it’s like if it’s a constant battery and preventing people from doing the things they need to do in daily life, then you really have crossed the line. And so I don’t know what the exact dose is.
And we’re still working on that. That’s an open question for a lot of research studies. I will tell you that people generally like to keep their interactions with most of our, you know, sort of nudges, less than 60 to 90s or so. They like really short interactions. They like to limit the number of button presses, just like clinicians with the electronic health record will tell you, the less clicks, the less presses, the better, the easier that they can find the information or the button or whatever they’re looking for, the better.
And then the number of times per day, you know, sort of frequency with which they occur, I think is really an open question.
Craig Joseph MD, FAAP, FAMIA:
Yeah. I, I that is that’s fascinating way of kind of thinking about it. As a toxicologist, I, I suppose would that any medicine really just becomes poison, at a, at a high enough dose and so kind of understanding where that sweet spot is, it makes sense. As I was thinking about this, it was reminding me of just something as innocent as, a puzzle.
I play these, you know, dumb puzzles because I think it’ll help me, you know, keep my sanity. One of the things that it does is, you know, tells you, hey, you’re on this five day streak, you’re on the six day streak. And then at a certain point, I’m doing them even when I don’t want to because, well, I don’t want to lose my streak.
It was just weird that I was so easily manipulated by this puzzle. I can imagine that, you know, something that’s actually matters. Not a not a silly game on, on a phone that. Yeah, at a certain point, you’re living your life to get or not to get the, the interventions. And finding that sweet spot is difficult.
Another thing that you mentioned when kind of interacting with some of your, your research participants or your, your users, is you found an interesting relationship between how long they interacted with the, with the app in terms of, you know, their staying power, and, who they brought with them, if anyone to the enrollment, which is. Yeah. I mean, my first question is like, how did you even study this?
Like, how did you even write down, you know, who how did you think to write down and note that they came to, you know, the enrollment session with someone and who that person was? Did you do that kind of a priori, or is that just something that you figured out as you were kind of going through?
Stephanie Carreiro, MD:
Not at all. This was completely by accident, as all the best discoveries are. Right? So, I think this is where having using a mixed method design where we collect quantitative data, right? Like the, the physiologic data and the number of hours they were collected, all this good stuff, but then also doing qualitative interviews, right, talking to people and recording those sessions and transcribing it after their experience.
I think that’s what really has allowed us to dig into some of these other, these other trends that we noticed that that it because when people tell us about their experience, and I think this finding of having a companion or, a buddy system, it sort of evolved to evolve. So we have an app, it’s called RAE health.
It’s an app where basically the wearable sensor that’s involved, which is just a Garmin sensor, will detect stress or craving, and people will receive a small thing when an event is this is, detected and they’re asked to do a short intervention. So they do a short, you know, of rating scale and describe their feeling. They can do a little journaling exercise or a short breathing exercise, all of which, again, should amount to less than about 90s of interaction.
And we started this with the idea that we were going to get all this data, and the goal was going to be to put it into a clinician dashboard so that the prescribers could see this information about their clients, like how often they’re having cravings and stress and what they’re saying. And so we enrolled people. We know people on their own.
The person with substance use disorder was the study participant. We had communicated with their providers sort of separately to let them look at the data, as well as as was allowed in the consent and some people showed up to visit and they said, I, you know, either because they weren’t, particularly digitally savvy or they had people in their lives, we just who just help them with a lot of things.
And so they would bring, a child or a parent or a partner or, just, sponsor someone with them. And when we would do the training, we noticed people would ask to that person to sit in on the training, and then they would often, you know, sort of in their exit interviews, talk about how they would communicate that information to that, to that person.
And so by the end of the study, we noticed that some people engage longer in some people, you know, sort of didn’t continue to use that for their days. And anecdotally, my study team noticed that the people who had brought someone to the to the intro session were kind of the same people that really aligned with the people who were staying engaged longer.
We also noticed when we talked to providers that they universally said, I am. And when I see providers in this context, I’m talking about prescribers, right? So typically physicians or advanced practice providers, they were like, I am too busy to deal with all this extra data. I’m already getting bombarded with data from the other ways. I don’t know, honey.
I don’t know how to use this. And so we sort of went back and forth on whether we need to synthesize the data in a different way. But when we couple that with the finding of having someone who’s a little more involved in the day to day life of the client, we really had this epiphany that maybe the prescriber is not the right person to engage in this app.
And for people with substance use disorder, we actually turned to their peer recovery coach. And so if anyone’s familiar a peer recovery coach in the context of addiction treatment is a person who has lived experience, so they have a substance use disorder, they are typically in recovery for long term, and they essentially make it a career to help other people who are who have active substance use disorder, who are struggling, and the peer recovery coach tend to have a more casual relationship as opposed to a clinical relationship.
And they tend to be very involved in the day to day life of their clients. And so with that information, we basically rethought through the app the and we created a companion app that is meant for a peer recovery coach. And so the core app for the individual is, is similar in that they still see their stress and their craving and their metrics and their in interact, but with their consent, their data is also shown to a peer recovery coach in a way that the peer can see their trends, can see the journaling that they’re doing, the things that they’re reporting.
And, you know, potentially, if the client allows it, the geographical locations where these events are occurring, and then the peer in the client can use that tool to talk about what’s going on, where, where, when, and why their cravings are occurring and what they can do about it. And that has actually gone over much better. And so our second, our follow up study, we actually enrolled people with their peer recovery coaches to use that together.
Craig Joseph MD, FAAP, FAMIA:
I was wondering how you kind of designed for the client for the physician or provider, the prescriber, at the same time as you were designing for the, you know, for the client or the patient. And ultimately, the answer might be as well, we’re not, you know, just cutting out instead of giving those data to and findings to someone who really doesn’t know either doesn’t know how to interpret them, doesn’t have time, it just doesn’t fit in.
Just give them to if there’s someone else who can use those data meaningfully, it’s that super interesting. And I do love how you said, you know. Yeah. Well the all the best research is accidental. Like, we weren’t expecting to find that, but that is, that is that is cool. So is wondering about where you get your research participants and some of our conversations you had mentioned that you don’t typically go to a courthouse or to anywhere, you know, near like a drug court.
And so first of all, I, I assume I, I have some idea about why that is, but, why don’t you tell us why that is? And if you’re still doing that.
Stephanie Carreiro, MD:
Yeah. So we decided pretty early on not to, engage in any way with mandated sentencing. So the idea of putting devices on people against their will or for purposes of surveillance doesn’t really align with my with my personal or research goals. Because I truly believe that if you do that, people will find a way to circumvent the system.
Right. And then instead of working on getting better, people are going to be focused on how do I cheat this? How do I beat this? Right, right. And I don’t think that there’s anyone out there. I’m sure there’s a there is there are lots of roles for or in reasons for law enforcement to mandate things, but this is just not I don’t think that our systems are built for that, or I don’t think that’s the best use of my systems.
With that said, we’ve worked really, really hard on developing the relationships with different recovery centers and with any of the people who participate in the study, so that they understand that this is a tool to empower them with information. And if at any point they decide this isn’t right for them, they can just take it off. And I think when you tell people that, you automatically decrease the chance that they take it off, that they actually take it off.
Right? And even if the sensor comes off, that’s a useful piece of information for the clinician. If someone has been for a long time wearing, you know, the sensor and engaging and all of a sudden they don’t. And I think that’s just a topic for discussion with the provider to say, hey, what’s going on? And so I think, again, our sort of strategy has been empowerment as opposed to surveillance.
And we’ve heard that time and time again from, you know, clients and providers and our qualitative work, that that’s the way it has to be. If you if you truly want people to be honest with you and to use this to better themselves. That said, I did have one small group of folks that we recruited from drug court and the center was still not mandated, but it was offered to people who were essentially in a program where they were in sponsored recovery programs.
Again, it wasn’t mandated, but it was an option as opposed to, you know, sort of entering the justice system. And then and then this was offered to them as, you know, something adjacent to their program. We did we did get informed consent. They were not considered, you know, this was not considered prisoners at all. And they, we specifically told them that we will not share your data with any, you know, sort of any sort of justice related folks unless you can decide to do that.
Right. So what we found is that some people were skeptical, but we did get some people to enroll. And it was fascinating because the people who enrolled, were really committed. And they did they were really engaged. And we had one participant tell a story on their follow up visit that we that was really inspiring for our team.
So what happened was this participant went for their follow up visit, and they had to stand before a judge and explain, you know, how treatment had impacted their life and whether they thought that they were on the right track. And this participant very proudly wore their center to court and showed the judge and explained the judge how the app was working and was very excited and talked about how empowering was.
And he specifically said that it was very excited that someone was building, an app for people with substance use disorder, because he didn’t think that they were typically included in this kind of technology development. And at the end, report, I was not there. But her report, there were, high fives all around the participant, like at the high five.
The judge and people were excited. And it was really cool because not only was this person very, you know, sort of proudly talking about their participation in our study and, and the app, but they felt empowered. And it it was interesting because I feel like maybe it shifted a moment where there could have been a sort of adversarial relationship between the participant and the court system or the people around him, and instead it sort of sounded much more collaborative, where everyone was really excited that he was doing well and, intuitive.
Craig Joseph MD, FAAP, FAMIA:
Well, I would I’d be I’d be thrilled if I were on your team and heard about high fives with the judge. So congratulations and congratulations to you and your and your team. Have you have you actually run into times where someone wants to kind of use the, the program or the data in a, in a kind of more forceful way, like a judge is like, well, you know, if you do this, I’m going to be more lenient on you.
But if you don’t, we’re going to throw the book at you. Is, has that happened, or have you been able to steer around away from that?
Stephanie Carreiro, MD:
So we have it. So we put a lot of safeguards in place to make sure that the data that we have belongs to us and can be obviously shared with the research participant, and then only the people they designate. So, for example, if they enroll with a peer, it’s part of the consent that your peer can see your data.
We are our research is protected by a certificate of confidentiality, which is really nice because you know that the data the data can’t be can’t be seen and or anything. But it’s interesting because it’s one of the concerns that comes up frequently when we talk to people about whether people would want to use these devices in the real world and if so, under what conditions.
And that’s changed a lot over the last ten years. Right. Like, so probably, you know, eight, nine, ten years ago, people were people were in some ways less concerned about private. They were weirded out by the technology, but they were maybe less concerned about privacy because they weren’t thinking about data sharing as a, as a risk the way that we do today.
And so we’ve seen that evolve over time. We’ve seen people concerned about access to the data for a number of reasons. People are concerned particularly about geolocation data. It’s very, very sensitive, which we respect. So in any case where geolocation data is used in our apps, it’s an optional you have to opt in, you have to turn it on and you can turn it off at any time.
For that reason, we’ve seen people express concern over whether data about, you know, quitting or return to use or even medication adherence, because some of the products we design can actually tell if people are taking their medications or not. We’ve seen people, you know, expressed concern over whether they would be denied insurance benefits or whether they would be considered in violation of their parole or probation, or whether they would be whether this would be used against them in, in court for other reasons.
So we’re very, very sensitive to that. And, you know, we work to make sure the restricted is under their control, but we also work to make sure that people know exactly how their data is being shared, where it’s stored, and how to how to change that. And I think that that’s not something that’s super common in the products that we use every day.
Craig Joseph MD, FAAP, FAMIA:
I think, especially like you’re just talking about with geolocation data, you know, that free weather app may not be free because of the goodwill of the creator, but it might be free because they’re using your location and selling it to third parties. Speaking of third parties, so you’re a researcher and an academician. Are there thoughts about or, you know, have there has been interest in, in commercializing or in any event, you know, spreading some of these technologies that you’ve created or are people kind of taking them and, and running with it with these ideas or, or not?
Stephanie Carreiro, MD:
I’ve collaborated with a small business. The company is called RAE health, and they are. We collaborated through an NIH SBIR award, which is a really unique collaboration between industry and academic partners. And so we’ve done a lot of the research and they’ve done a lot of commercialization, and they actually have commercialize the RAE health app, and it’s being used in, substance use treatment centers across the country, which is really cool.
So that is out there, some of our other work is in is a little bit earlier in the pipeline. And so our hopes is that as we move forward, this is stuff that we can disseminate widely as well.
Craig Joseph MD, FAAP, FAMIA:
All right. Well that’s I’m glad it’s getting out there. And I hope you become a gazillionaire. But I, I suspect that’s I suspect that’s not the case, but I’d like to see you maybe moving, you know, next Mark Cuban or, you know, someone like that. If you could have, you know, by an island, that would be good.
Stephanie Carreiro, MD:
Well, I unfortunately, I’m not making, I have no conflicts of interest here, and unfortunately, I’m not making a gazillion dollars, but I think that, if we can get these things out here and we can make real it make tools that people really can, really can use and and can help them from coming back to my emergency department with, you know, consequences of their of their substance use disorder. That would be good enough for me.
Craig Joseph MD, FAAP, FAMIA:
That is a great answer. And with that answer, Doctor Carreiro, we are we are running out of time. I did want to ask you the question that we always ask our guests at the end of at the end of an episode, which is, we’re talking about design and we’re talking about health care and, you know, wondering if there’s something that’s in your life that’s so well designed. It, it brings you joy whenever you interact.
Stephanie Carreiro, MD:
To get a question. Well, I am I’m a diehard Mac fan. And so I would probably say my MacBook because I have so much that I have to do that on a computer. And my MacBook is just designed in a way that stuff works. There are always multiple ways to do things, but it’s pretty easy to find. And I joke that if our hospital systems were designed by Mac, then we would have much less friction. So I’m going to go with my MacBook or any of my Mac products.
Craig Joseph MD, FAAP, FAMIA:
And I am I’m going to second you. I’m going to hold up my personal laptop, which I’m not supposed to use for work, which I don’t use for work. Just for the record, but I, I have it close to me at all times. I am, I am, an Apple fanboy, so I, I throw that out there that I am in
I am completely biased towards Apple products. For the same reason many physicians like you are. So. Well that’s awesome, Dr. Stephanie Carreiro thank you for the work that you’re doing and sharing some of those, some of that, that research with us, and especially how you apply design, whether purposefully or accidentally, whether only with your team or co-designing with your research participants. Really appreciate it. And thank you.
Stephanie Carreiro, MD:
And thanks so much for having me been really fun. And thank you for all the incredible work. You’re doing this space as well.
Outro:
Thanks for tuning in. We hope you enjoyed today’s episode. For more on Dr. Carreiro follow her on LinkedIn or read about her work at RAE Health. See show notes for links.
Check back for more episodes of Designing for Health wherever you listen to podcasts or on NordicGlobal.com. We’ll see you again next time on Designing for Health.
LinkedIn and other web links:
https://www.linkedin.com/in/scarreiromd/
https://pubmed.ncbi.nlm.nih.gov/?sort=date&term=Carreiro+S&cauthor_id=38917718