In the sixth episode of MindSea’s new Moving Digital Health podcast, CEO Reuben Hall is joined by Juhan Sonin, Creative Director at GoInvo, a design agency focused on user experience (UX) in the healthcare space. Listeners may be surprised to learn the extent to which Juhan’s work is informed by public policy.
As an experienced systems engineer, Juhan illuminates the importance of designing for users on all sides of a system rather than limiting one’s focus to only the patient’s or the clinician’s perspective. He notes that because patients may sometimes avoid thinking about their health, excellent UX is essential to making that process more palatable, or even enjoyable.
Storytelling is a critical element of design, and as Juhan notes, this means a successful engineer must be capable of making a convincing case. He points out that public policy has a massive impact on healthcare and that GoInvo designers must therefore actively address policy issues in order to help approach particular health outcomes.
Juhan shares some of the specific policy changes he would like to see and elaborates on the impact such changes could effect on the state of healthcare in the United States. In particular, he and Reuben dive into the subject of patient data ownership, and Juhan explains how the lack of a clear story around this issue has impeded progress. He relates his observations of present public opinion regarding data privacy, describes how careful storytelling could help to encourage participation, and gives us a picture of where he sees the data sharing model headed in the future.
On the subject of data, Juhan notes that representation is critical—both for equitability and in order to produce a clear picture of health care. He shares the “All of Us” program from the National Institutes of Health (which GoInvo is currently supporting) and the value of democratized representation.
Juhan’s experience working in UX design, engineering, and public policy in the healthcare space makes this a fascinating and multi-faceted conversation. We thank him for joining us to share his perspective and his expertise, and we hope you’ll enjoy his episode of Moving Digital Health.
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Read Transcript:
Reuben (00:00.04)
Welcome to the MindSea podcast series Moving Digital Health. Our guest today is Juhan Sonin, creative director at GoInvo. Hey Juhan, how are you doing today?
Juhan Sonin (00:00.15)
Oh, I have a pulse, at least, I’m pretty sure I do.
Reuben (00:00.17)
Okay, that’s a good start. Maybe you could introduce yourself a little bit and talk about your background, and we’ll go from there.
Juhan Sonin (00:00.26)
Well, I’m not that interesting.
However, since we’re talking a little bit about digital health, that’s where I live. I live in the design of services for how patients should or could or want to engage with their health.
And the same goes for Clinicians. Clinicians have been unfortunately not paying attention to in the design world as much for the past 30 years, and their lives have gotten harder. And so if you’re not paying attention to both sides, patients and clinicians.
I Think you’re not doing our job as system designers.
But then you need to also consider. Hey, there’s this thing called policy, It helps to change the law if you want to change health outcomes. And that’s something also we not just dabble in, but actively. Storytellers create prototypes to show proof of principle, and that is also part of our quiver of design gigs.
Reuben (00:01.30)
Excellent. Maybe could you give an example of a project that you’re working on that has those multiple elements of the user side and the clinician side?
Juhan Sonin (00:01.44)
It’s often the case where you’re actually designing for one of the parties and not necessarily designing for both at the same time.
That’s also a problem in healthcare, is that you’re positioned to say hey the clinicians are suffering because they’re using Epic or Cerner. You name your electronic medical record. Borg Entity of choice.
And they’re having specific problems with prior authorization, with how crazy that note taking is during encounters. The overhead In some small clinics actually having to code the encounter after the fact meaning you know how do I pay for this?
So there’s lots of things that have to deal with the clinician alone or with admin, the admin of trivia, the payment part or the payoff part, and then the diagnosis god forbid, and treatment. And then there’s the other side of the coin, which is well, how do patients get into the system? How do they get out? Do I have to do this at all?
And often, sadly, they don’t co-exist in the same project. In terms of designing both experiences at the same time. Of course, they coexist, they have to. However, it’s often that projects don’t do that simultaneously, and I think that’s actually a big problem in the healthcare world, is that you don’t think about all the parties at one time, and that’s good system engineering. You look at the entire landscape, the ecosystem of all the crap that has to happen. And yeah, you need to focus on one or two things, but understand the ripple effects that if you do X, Y, and Z for clinicians. That has an impact on the ABC for patients and vice versa or their care teams.
And so it’s often we’re just dealing with one side of that. However, as good designers, as good engineers, as good policy wranglers, you have to understand all sides or many sides of the health care forum, so to speak. So what are we working on now that’s of interest? Well, maybe it’s a of interest. But it’s what we’re working on, that I can talk about it. We’re working on one project that comes out of the National Institutes of Health. It’s called All of us.
It is a national US program, to how do we get more patient representation in the research data that’s not just middle aged white guys like me. We have too many of those as it is. But how do we actually see a census like take? A realistic proportional census like take on the health data of humans that reside in the U.S..
And allow researchers to then use that to better create equitable care and see health care as it stands. That is a really important program for the nation. I think there should be the same kind of thing for the planet where patients donate their data, maybe get paid to participate and know that their data is safe and only going to be used for this kind of research and not for the proliferation of their health data to be sold. And shepherded to commercial entities.
But used for the public good. And that, I think, is an important kind of project that we need to see more and more of. And that’s just one of many projects we work on.
Reuben (00:05.28)
Well, that is very interesting to me and sounds like an amazing project to work on. How open are people to sharing their data? Do you find that when you talk about the reasons and the uses and the way that data is going to be used, are they on board or are they really hesitant to share?
Juhan Sonin (00:05.52)
Well, our minds have been pillaged over the past 20 years. Because it’s the last bastion of capitalism, is how do we extract our experiences from us. That’s where money is being made. You know, the Googles of the world. Amazons of the world have been mining that.
The health care world has been sucking it up across the planet. And what we’re seeing, at least in our research and lots of other people’s research, is, you know 15, ten years ago. Donating your data to science, your Healthcare data it was like an 80% rule. Most patients when they’re approached is like, yeah. Sign me up for that. Your hospital system, you’re doing brain research or, you know primary care research or… Yeah take it and go.
What you’re seeing, because of the proliferation of the surveillance state and surveillance capitalism. The idea is that it’s been contracting a little bit. So I think we we’ve lost about 20 points on that 80 to 60 or half of people now are pretty damn wary. I think everyone’s wary of where their data is going and some way.
How can it be used against me? How can it be used for me? Is less of a story, unfortunately. But I think we have to be very diligent in how we tell both sides of that coin. And so I think so far it has been down turning over the past decade for some good reasons and some not so good reasons. And so right now, I think usually the pick up is about half the people that you ask would say, yeah I think under the right circumstances I’ll donate my data to research.
And that’s okay, I’ll take half. That’s still a huge amount of humans who would participate.
Reuben (00:07.50)
Yeah. So on one side it’s good that people are more aware of their data and their right to own that data and what might happen after they donate it. But, like you say on the other side, that constriction of data actually means there’s less to combine, but there is, you know, so many people in the US that that’s still a lot of data to work with.
You mentioned one of the challenges being the diversity of data in terms of ethnographically and I guess, age and gender. What are the factors that go into that?
Juhan Sonin (00:08.31)
Well, who has the spare time to conduct surveys and do surveys and sit with a large chunk of paper, you know, this was 15, 20 years ago or now with their mobile device. And think about well how am I doing and how do I respond to this research question? That is a luxury in a lot of people’s lives. And so that’s why it’s been a further fairly upper crust response rate traditionally to these kinds of things.
That’s been changing over time because researchers, one are recognizing that. Hey, can I do very small little chunks of investigation? Can I get ten, ten data points in 20 seconds? Not so bad and not so shabby.
Also, can I pay patients to participate? What a concept.
This is going to become more and more a thing as patients have more and more control over their data where pharma will rent out part of your data set for six months in order to see, okay, are you improving? What can we learn about you? And they’ll give you a hundred bucks a month or whatever that may be.
And that’s not chump change for a lot of people.
I can pay their cell phone bill and they’re, if they have a pet, their pet expenses or something. Right. That’s pretty great. So I think that is going to tilt it again back to the sharing model is can I have control over it? Who am I going to control it with? Is it a limited time frame? Can I get paid for that? Am I actually doing good for patients like Me?
And I think there are a lot of factors there that will help increase the sharing over time. Or at least the depth of sharing.
Reuben (00:10.25)
You know, on the other side of it, what are some of the use cases for this more diversified data pool once you have it?
Juhan Sonin (00:10.38)
Oh, there are a lot of potential uses.
The thing with all of us, what they have done here is they’ve made a conscious push to not go after the middle class, upper middle class, and wealthy health users, and humans and patients.
They have made a real effort to say, well, how do we make sure we get a representative sample of people who live in the city, who live in rural parts of the U.S., you know, through IHS Indian Health Service, through clinics, local clinics. And you have to do this with intent or else it won’t work. And I think it’s a good example of doing that pretty well.
So what can you do then with that information? Well, this is pretty wide open. It would be fantastic to… Actually my, more of a fantasy is you’re starting to build data pools of humans for research that can look at and predict disease in advance or, hey, we have a clinical decision services these little microservices that predict in advance or tell us. What’s happening with our bodies, like there’s the classic one with five data points about age, sex, height, weight and smoking that says okay, here’s your risk for high blood pressure, a heart attack. It’s well known there are many different little clinical decision services like that.
Mayo Clinic has it, the American Heart Association has one. More and more of those kind of little services that can help everybody learn a little bit about what’s happening inside them. But it’s all based on real data. And people who look more and more like me or act like me or live like me. That becomes more and more important when you’re making predictions about your health.
And so as a patient and as a clinician, I would think those kind of little services are very important to come out of the research fairly quickly. And my hope is, too, that those little nuggets of predictions aren’t then tied to the institutes where they were born, because the data was built by patients.
And they often are restricted. For instance, Stanford or Mayo Clinic are copyrighted and patented and then closed only to be used by them.
Now, on the broader things like blood pressure those are pretty well known and I think many of them are open. Or at least open to use. Anything more complicated or otherworldly than that? They’re all closed off and housed inside those quote nonprofit institutions.
So I think this is the hope is that more and more open research can be done in open science. In order for all of us to get a little better clue of what’s happening in us.
Reuben (00:13.49)
And, of course, more data is better from a research point of view. So, you know, in terms of the types of data collected here.
Juhan Sonin (00:13.59)
Is it always more data or is it the quality of the data from a statistically relevant sample size?
Reuben (00:14.08)
Yeah. 100% the quality. I guess when I say more, I was thinking about like per individual, the amount of data points you get from one person. I’m guessing more is better. Would that be correct to say.
Juhan Sonin (00:14.07)
Well getting a fuller picture of someone? Yes, I agree. There is more and more power in that. As you collect more and more and maybe you’re collecting the same data point many times in a random pattern or maybe not so random over the years so that you can see a normalized view of that data because there may be a few of those data pickups that are not so good. They’re not so precise. But to your point if you’re getting enough sample of that same data point over a year versus one time that you show up to a clinic, versus 100 times during the year, that might be a much better data pool. So to your point, yes that can be useful.
Reuben (00:15.05)
I’m wondering, is DNA part of the dataset that is being collected? Because when you start looking at it, DNA and then how that affects different ethnic populations, you can also see broader trends of disease or risk factors at that level, right?
Juhan Sonin (00:15.31)
Yes.There have been many studies in the past and now current studies that use your genome, your DNA. Your protein level that descriptions of you as a human, as part of the research. So all of us does use blood and saliva and kits to gather different data points about it, one of which is your genome, or parts of it snips.
The whole country of Iceland did it. What is it already eight years ago, I think. Where everyone was sequenced. That’s pretty amazing. We’re going to get closer to that. I think over time where as part of birth you are sequenced.
The crazy thing is I actually think that should happen much earlier in that you get sequenced in week 16.
And now that gets scary for a lot of people very quickly. Is can you start to do things with humans prenatally and eradicate some diseases? I know people are going to freak out and they should freak out.
But I think these are things you have to talk about that are not comfortable. But that’s where you can see the issue going is how can you eradicate disease in advance. So they’ve already started to do, in essence, parts of that through vitro fertilization, through IVF, selecting the cells that will survive. That is one kind of parsing.
And so you’re doing that at the protein level, in essence. So something to think about, I don’t have an answer there. It’s a tricky one, and now only available to those who can afford it. But that’s coming.
Reuben (00:17.23)
There are a lot of ethical questions there. But you also see the power and the benefit of collecting data on a population level and the good that it can do as well. Right. So yeah, it’s really interesting to see the trend and where things are going there.
Juhan Sonin (00:17.45)
Well, we need law, by the way, to criminalize the pejorative use of our health data that does not exist here in the United States, so that if we have a national law that’s sets up guide rails, that for how companies, how individuals, how nonprofit groups, how the government can use your data, I think that would be a key aspect of assuaging some fear not all, but some. And having criminal liability in releasing your data. And accidentally losing it, so to speak. In using it in nefarious ways.
That to me is a pretty critical national priority for the U.S..
Reuben (00:18.40)
Yes, it does feel like the Wild West a little bit right now in terms of health data. The regulations are behind the industry and the corporate world in terms of how that data is used. You mentioned before your work to influence policy to to help push for change. Or maybe we could talk about that a little bit.
Juhan Sonin (00:19.10)
Fire away.
Reuben (00:19.12)
What are some of the specific policies that you would like to see changed in the US?
Juhan Sonin (00:19.20)
Well, that is a hard question.
Reuben (00:19.26)
Feel free to choose one or because yeah there might be a lot there.
Juhan Sonin (00:19.31)
Well this is… Well okay let’s start with health care since we’re talking about health care. I think there are a lot of things that stem from the chaos, the designed chaos of our system to extract the most dollars from humans. So there’s a profit over people mantra that has been going on for, you know, 50 years in this country so we need to do a few things in order to temper that enthusiasm for the mighty dollar, which.
Is one, we need some public option for humans, residents, citizens of the country. Whether that’s a, you know complete universal health care system that abolishes private health care or has some private health care options that many countries do and has a larger public option for anybody who doesn’t want job tied insurance or coverage. And we already have one of the biggest public health systems in the planet with CMS, Medicaid and Medicare. And yet I think we need to.. The first there would be several laws that I would work on.
Can we drop the age of Medicare by ten years every five years. Or something like that? And so all of a sudden it becomes Medicare for all. You can still have private options and the actual implementing of care, the actual doling out of care is probably done by private entities. Right? So CMS really just becomes centers for Medicaid and Medicare, becomes a benefits handler and the private entities become where health happens or how it’s manifested.
That to me would be a pretty good one to start to look at. There are lots of other things in health care, like crushing the sugar lobby. We eat really badly. The food, you know, what we throw into our gullet has massive subsidies from the US government. What subsidies should we be doing for farming in this country? For lobbies in this country should be another thing we should look at.
We should most likely instigate a patient data ownership rule that puts the patient as the owner or co-owner of their data, at least as much as law can allow.
Because there are some things when you walk into a clinic and you have a communicable disease, they need to report that to their local CDC and up the chain, but that you have a little more control over your data. That would be another piece of legislation that we could work on.
Should we decriminalize drugs, period, so that if you use you are not a criminal. You’re seeing more and more of that with the opioid crisis or catastrophe, where police, at least here in the Republic of Arlington, Massachusetts and in Salem, were the first in the country. To decriminalize most opioid overdoses so that they’re not hauling you off to jail.
They’re actually giving you narcan. Every cop has narcan on their waist and they can revive you. And then they bring you to treatment. Why? While the first thing it’s actually cheaper, it is cheaper, but then, God forbid, there are better health outcomes if you get someone to treatment versus shoving them in a jail cell.
So there’s another one. So I just listed four quick ones. If you want, I can send you a whole list that I have that I have posted on my wall of health law that this country should consider.
Reuben (00:23.35)
So how have you used your background in design and user experience to help communicate or advocate for these policy changes?
Juhan Sonin (00:23.47)
Our job is, as designers, as engineers is to, one understand the problem sets. Two start to think about, well, how do we solve these things with the people that are suffering with these problems? And three be able to convince people that they should get on the bandwagon. And this is a problem and here’s a potential solution or five of them.
And we often ignore the convincing other people, vibe or thread. And that is something that we, I dig myself into. The Oh yeah, these amazing pixels are going to change someone’s mind. No, no, no. They rarely do. They’re rarely beautiful enough images and experiences that without a little honey and flowers and convincing an arm twisting and crowbars that you can actually get something into production, into people’s hands, into their are silicon bricks in their pockets.
And so that is, I think, a critical aspect of engineering and design and system engineering is can you convince, can you show evidence, can you create a story that says this is exactly the problem why we need to attack it.
How we’re going to solve it? And your butt is going to be bent to this throwing money on the table and you’re going to be blood letting for this. Now, that’s a little harder.
But that is a skill that is required. And we’re still honing our chops at this one recent example maybe that you’re referring to is the own your health data dot org and com both, they go to two different URLs. That we made a little graphic novella for humans in Massachusetts and hopefully in the U.S. to read and to see written at a fifth grade level uses, you know, It uses pictures and graphic narratives to tell a story of why we need to think about this.
And it does it in such a way. I think many people can understand it. So that a fifth grader could at least start to say, Oh, this is I got to think about this a little bit. And there’s the companion piece, which is the white paper, which has, you know, 25 references and previous law, and that describe for the health analyst the Chief Medical officer, Chief information officer. Here’s some of the evidence written for more in academic style. So you have different audiences and then you need the rule makers, the lawmakers, the publicly elected individuals in our cities and states and country that need to understand this as well.
So draft small pieces of legislation. How can you outline the five points that a piece of legislation should have? And so you need these three vectors, I think at a minimum to start getting humans to care. And that’s what we have to do, to do it through multiple different ways because different humans act and react differently to different things. And that’s a start that how to bend minds and change behavior in order to get ideas pushed and live.
Reuben (00:27.17)
And what kind of response have you had from us to see a lot of people getting on board and saying, Yeah, I totally agree, let’s make this happen? And is there a groundswell on that or is it a harsh conversation too, to get people aligned with.
Juhan Sonin (00:27.37)
This idea has been around for decades. Patient data ownership, decades and decades. I think when we stumbled on to it close to 20 years ago it was sort of a side channel for us. And then now ten years ago, it became a bigger deal because you saw it happening in our lives all the time and still then it was massive pushback from most, even health advocates. The story wasn’t clear enough. We weren’t doing a good enough job.
I think we’re just having a number of things braiding like a river now both in culture and in technology and in what’s happening in the world. And how people are making money. How healthcare is working. That there’s a confluence of ideas collecting that make it a little more approachable and understandable. And we’ve also honed our story, too, over the past decade. And there is a lot of, yeah, of course we have to do this.
And the clinical side. I think we’ll put up a little bit of a fight, well, probably a big fight because they own the data right now. Usually that’s in law too. So and I think half the states it’s in law that the providers own the data and the other half, it’s murky but always typically will default to the providers owning the data.
There’s one state, the state of New Hampshire, which does have it in law. The patients co-own the data, however, the judge in that original case, I think 18 months ago or two years ago said, well, that wasn’t the intent.
So all of a sudden you have like a law that could have been a precedent for the rest of the country now sort of being hammered by the same judge that ruled it in the first place.
So this is a long winded way of saying we’ve gotten a little better at how we tell our story. And the public has been more and more aware of how their data is being misused. And yet we have a long way to go, because you’re still not having a consensus in the health care world of data ownership, patient data ownership.
It’s still a big fight. You have big hospital systems who are siphoning off, or starting their own companies based on our data. And nothing’s coming back to the patient. We didn’t sign up for this. We didn’t opt out, couldn’t opt out.
For Truvada, for instance, like in Puget Sound region, I think over half of all people who live in the Seattle area, their data is now being used in a company that was spun off by a half dozen hospitals called Truvada. In order for them to then sell the data for research and for commercial uses. And no one had no patients said, yeah, sure, go ahead and do that. It was they use the DUAs, the data use agreements.
That are still put the clinicians, or the hospital systems in control. And there was no way for patients to say, yeah, I don’t want any care because I’m having a heart attack, you can’t use my data any way you want. What are you going to do?
You’re under duress. They’re not reading the entire terms and conditions. No human does that. And they’re preying on all of us. And so I think you’re seeing a slow change of that effect. That’s my hope.
Reuben (00:31.04)
It brings up a good point, because like a lot of the agency has been taken away from the patient in terms of what happens to their data. A lot of times after it’s been taken in. What the patients really want or need from digital health services. I think we talked a little bit about this before, but you know us, as you know, we’re a UX and software development agency.
We’re building solutions for various niche problems. And, you know, it’s all hopefully to benefit the patient and their health. But you know, what do you hear from them in terms of what they’re looking for from the system or health services that’s going to make the most impact in their lives?
Juhan Sonin (00:31.14)
Well, patients don’t want to think about their health, humans don’t want to think about their health at all. So the fact that we’re dabbling and swimming or sinking in my case, In the health care world is because my nose is in it and because I have been in it for a while and I design for it every day.
I am highly interested in it. But as a species, our biology for the most part, our brains are telling us who cares? We don’t want to have to think about it. And those that do it, you know, have a chronic disease, they don’t want to think about it either. But their livelihoods are at stake. So they have to think about it in some way.
And, when you’re younger you feel invincible. At least, you know, some of us do. And you get a little older, you start to feel, okay, this is what it is to age a bit. But then you start to think about health a little bit more. And that increases because we’re forced to think about it because our bodies are not reacting, or doing the things that we have grown up with. If we’re lucky enough to have, you know, no serious conditions.
So, look, we’re fighting biology here, and our brains, to say, oh, yeah, think about your health care now. Think about your health care now. Think about your health care now. And it’s annoying as hell.
It’s we don’t want to think about it. So that is the prevailing gust of torrential wind that should be thought about in the health care world, in digital services. Don’t make me think about it. But when I have to make it beautiful, make it highly lubricate it, so I don’t have to think much about it, or I can get up the curve very quickly.
Or guess what? Someone else, who is very knowledgeable at this, can help navigate me through the health care space. And sometimes those will be a combination of digital little services with humans. That has been a very good combination at least recently, where whether you’re in triage, whether you’re and get me a little help right now I’m in trouble whether it’s I have a condition. I just got diagnosed. Help me OB one.
And that OB one service will be a community health care worker armed with their cell phone or a nurse, nurse practitioner walking you through options and showing you live, Hey, this is your condition. Here’s what you can do about it.
Those are, I think, the next interesting little services that more and more of us will have at our disposal 24/7 365. Because this idea of primary care being 8 to 8 or 8 to 5 is ridiculous. I sympathize with the clinicians because they’re overworked and crazed. But we have to think about, you know, how we do primary care for everybody. And do a much better, fund it much differently and also have a lot of nurses and community health care workers involved to allow for 24/7 care, or access to questions and answers.
That’s where I think these services should go more and more towards, versus the I have a you know they’re 4 people suffering from this, that’s more of a research problem and a different type of critical need.
There is the primary care need, which I think trumps almost everything. I can’t use that word anymore, but, you know, that’s where we need to go more.
Reuben (00:35.43)
Yeah, I definitely see your point that a lot of people just don’t want to think about it until they’re confronted with it and you know, it hits in the face of like, oh, now I very much have to think about my health. But there seems there’s another segment of population that is very concerned about their health, and it’s usually people of a certain age and demographic that are buying all the apple watches and Fitbits and connected health sensors like the oura.
And they’re almost obsessed with, you know, gathering data and knowing about their health. But it doesn’t seem to be the norm. They’re the exception to the rule, right?
Juhan Sonin (00:36.38)
Yeah. It’s a small, small percentage of people who can afford an Apple Watch for that matter. But most people do have a cell phone in their pocket. I think it’s, you know, 94 percent of all United Statesians have a cell phone in their pocket. That is a health device. Your cell phone has millions of data points about you. That’s a health device. Your electronic health record at a clinic, probably, if you’re lucky, has 150 data points about you. Which would you trust with getting data about your health more?
to your earlier point, 150 that the clinician has or the quarter million or million that your cell phone has? It’s a pretty obvious choice, and so that is one way I would look at it. There’s also this thing where we don’t even have good enough food science to say what exactly, based on your gut should you be eating and your biome? That’s just burgeoning and that would be fantastic so that we can have something that’s much more adjudicated by our own data, our digital twin and code, but also our gut, and what’s happening inside us.
We don’t have good diet data and research at the moment.
00;38;09;24 – 00;38;12;27
Juhan Sonin
To say what exactly we should be eating. Now there’s the Michael Pollan line of thinking, which is excellent, is eat less, mostly green, and you know, they go that way, and less meat.
That’s a human kind of care plan. After that it gets a lot more hazy about our diet, and that’s the kind of thing we also need more research put into. How do we start to get a much more adjusted diets for us? Now, I think if we just ate better, more green stuff and ate less. We’d be a much healthier planet for a number of reasons. But that’s a whole separate ball wax.
Reuben (00:38.54)
Yeah, of course there’s a standard diet advice for anyone. Eat more of the good stuff and watch the bad stuff. But connecting the dots between a unique individual, their age, their body type, their deficiencies and exactly what’s the best diet for that person is? We’re still not there yet.
00;39;21;24 – 00;39;23;04
Juhan Sonin (00:39.21
Yeah we’re not. and okay, we’ll get there. We’re slowly inching forward. There’s also this angle of why are some of us are really concerned or really interested in the data about our health, is we want a way to see health really early, like in advance so that it becomes much more of a stage zero attack on health care where it’s just burgeoning and you can then treat it much differently. Once it becomes a giant radish growing out of your shoulder blade, that’s a different kind of health intervention.
Yeah, you want it to happen right away and so I think there is this underlying desire to not think about health but also have the services of these little robots, these little services, these other helpful humans in my life and digital services to see things in advance before they manifest into that radish. But really at the protein level, that’s the Star Trek component of this.
Which that is, I think the fantastic part of what’s happening in research over the past several decades is I think there’s a Ting Lab at Harvard that’s looking at how proteins, when they’re created off your strands, you know, they’re basically two mirrored images of themselves, but the second something in the one of many, many hundreds of millions that replicates badly that’s the beginning of something either that has to be taken care of or manifest its weirdness in your bloodstream, in your body.
And they’re looking for and trying to create little other bots, other proteins that can identify them and nuke them at the point of replication or near after they’re replicated. So because that’s what turns into disease. And I think those are the kind of things that we’re trying to inch towards. Make me healthier so that I don’t think about it, but do it at the cellular level way before I can see it.
That’s the problem is when you go to the doctor now it’s because you’ve been feeling it for six months and I’ve been in denial about it. I just saw a blood vessel that came up. I have abdominal pain, but I’ve been actually shedding blood cells in urine for the past two weeks, well what the hell? Your toilet should be saying, Hey, it’s a matter of life or death. You could be having kidney stones, you’re not in pain yet, but we’re noticing the blood cells in your pee.
That’s the kind of thing that it’s technically advanced, it’s coming. It’s sort of a cure. There’s some already, you know, a toilet to do this, but it’s not for the mass public yet. But that’s, I think, part of the desirement and these technological solutions is seeing health care in advance at the stage zero or 0.1.
That to me is the sort of I think, to push and the excitement with how health could manifest.
Reuben (00:42.33)
Yeah. Keeping people out of the hospital and getting ahead of conditions before it becomes acute care. Right?
Juhan Sonin (00:42.42)
Exactly.
Reuben (00:42.46)
Yeah it’s really exciting to think about all the possibilities. And I think one of the questions I was going to ask you are, you know, what are the innovations that you’re most excited about that you see coming in the future? I think you’ve already touched on some of them there, but are there any others that you see are on the horizon in the digital health field?
Juhan Sonin (00:43.12)
Well, it’s going to be the combination of sensors, all types of different sensors picking up things for us during our everyday behavior. So, that’s something that we’ve been noodling on and a lot of people have been noodling on. Is this idea of your bathroom turning into health room, really.
And with the urinalysis in your toilet, when you touch your sink, you’re sloughing off an amazing, amazing data set there of your biome every day. So these bio stories and these collectors can do hopefully over time, some amazing analysis for us and we don’t change our behavior at all.
We’re just walking in the bathroom doing our thing, number one or number two, brushing our teeth, taking a shower. Your hair follicles are going everywhere. This is more, you know, sounds more Gattaca-ish. But Russia getting much closer to this than we were a decade ago.
And that to me is this idea of a constant review of systems. You know, that’s, you know, the clinical way of saying, well, what’s the little bit of information about you every day that we’re picking up to look at trends, to say how we think this is happening and it could occur in a couple of weeks or in a year if you keep going down the trend.
That’s where you’re seeing things in advance that begin to help me not think about health care some more and your gate being tracked a little bit for, you know, only you by your devices. That’s a big indicator.
How you’re walking, how you’re not walking, how you’re moving and through your eyeballs, through basic fundus cameras, pretty cheap. Not the huge Zeiss, you know $10,000 ones, you see ophthalmologist, things like that. But those are also excellent to see disease in advance in the blood vessels of your eye. It’s very few places in the human body. You can look in blood vessels without using a knife. That is one right right in your eyeball where you can see disease in advance.
So these are the kind of things that make me hopeful for the kind of stage zero detection game that health is going towards. That is pretty damn amazing. So sound listening to your voice over time, you can hear disease in your voice. You can hear disease. And see disease through your eyes, through your face, through your gates that end through your urine and other little metrics every day.
And as long as I am not having to finger this in there everyday, God, that’s actually bananas. No human wants to do that. If It does it invisibly. We’re going to be a much different kind of species because all of a sudden, guess what your toilet is going to be saying. I’m going to send you a little kit.
And it’s going to arrive on your doorstep tomorrow. And this is, you know, with a biome kit or something like that specific that labs need to pick up because you know something locally can’t do it. And it’ll be the living lab of you and your family at home that starts to get interesting.
Reuben (00:46.28)
The future does sound amazing, but will it be a more equitable health care system? Because, you know, the danger is it’s the wealthy that are sitting on the golden toilet that is collecting all the health data and solving their diseases before they even happen. And it’s the marginalized populations that know nothing about their data because they don’t have the smart toilet and, you know, all the bots and gadgets are working for them again or at a disadvantage.
Juhan Sonin (00:46.59)
Yeah. And that’s why a lot of research right now in getting little tidbits about people and helping people has been on the phone. Because so many people have them and it’s pretty amazing device. Yes it ruins our attention spans right now. It’s destroying parts of us. It literally is doing that. To our kids, to us. How many hours a day are people spending on those damn things? Way too much.
Reuben (00:47.32)
Lost to the gram, right?
Juhan Sonin (00:47.35)
Yeah. Yeah. And I think that is its own pandemic in this country. So there are lots of things I think we should be doing in terms of health care that will help some of this. One is, I think that by having for instance health care for all in some shape or form, we’ll start to say, well primary care is available to everybody and should be.
Or that anybody earning under 100 grand a year gets free primary care. I mean, you know, there should be some stable the fact like that where we don’t have an eligibility of coverage problem where you have to sign up for Medicaid, apply for Medicaid in a 60 form page on your screens service.
It should be much more, Hey, the government or this other service is coming to you going, you qualify for this, we’re going to put you on tests. Is this okay with you? Oh, yeah, that would be great. Wow. Yeah. We’re going to have someone come come to your house or there’s actually down the block. There’s a community clinic. You know, come in for just a hello world kind of experience.
That kind of primary care, I think, is critical for equity of health in this country. And there’s an excellent, excellent recent paper or just actually a book on the primary care. I think it’s the National Academy of Sciences wrote it and it came out earlier last year. That marks the key things we have to do as a country to get primary care everywhere that goes, everywhere from training of clinicians whether there RN or MDS and having programs to fund their care, a funder education and participate in health care in their communities to where they grew up.
And having forgiveness or paying for their education. Right now, we’re losing clinicians, nurses and doctors, both in droves. We only have about a million doctors in this country or less that does not scale. They do not scale. And so this fantastic read, long read articulates many of the programs we need to support as a country in order to get everyone primary care. And that to me is a different level of equity for all.
Reuben (00:50.11)
I’ll have to play this back and write down all these things and then look them up so I can learn more.
Juhan Sonin (00:50.18)
So I have a question here Reuben. It says part of what we also need to think about is, is health care a top one or two thing that this country needs to think about it? Is it? Where’s the health care priority in the country right now? What should the top couple of things we concentrate on should be? What are those things? Have you thought about that?
Reuben (00:50.50)
Yeah. I don’t know myself, like, you know, as a Canadian, our health care system is very different. Right? So. Well, I’m fairly knowledgeable on both the US health system and the situation there. My own personal experience is very different from yours as an individual. You know, going through the health care system, I would say in both countries and around the world, yes, it does need to be a priority. But within that, it’s hard to say, you know, what are the priorities within the health care system to make it better?
Juhan Sonin (00:51.30)
Yeah. Okay. So, yes, you are right north of the border and health care does exist other places. You know, sometimes I’m in denial. But actually, you know, one thing about the Republic of Canada is that in the Supreme Court there actually said it was a I mean, a couple of years ago now, that patients do own their health data.
So Estonia is really the only country on spaceship Earth that has it manifested in law. Canada is getting there. But it’s not implemented yet.
The Supreme Court has been on the patient side and that’s pretty great. But I’m actually then saying that there are bigger things in health care if we can’t solve the climate disaster that we have been culminating for the past 100 years. Who cares if we’re going to live ten years longer. Because the planet’s dying? Okay, I’m being a little facetious.
Reuben (00:52.25)
But yeah, but it’s a very good point.
Juhan Sonin (00:52.27)
If we can’t figure out the energy, clean energy, then many of us, many of us are going to have a way lower life expectancy and level of happiness in our lives so boom, one, two, if we can’t educate ourselves better and better and better over time, that’s a pretty critical problem. And that to me is a close number two to energy.
And you go down the list. I mean, I mean, for us, I mean, we need term limits for people in Congress and in the Senate if we can’t get term limits, do you think they’re going to care about having health care for all? No, they’re short sighted because they can be. They can just work week to week and not worry about the long now of human health or human existence. And so there are bigger fish in a lot of ways than just health care.
So that’s something to think about is what’s your list of one to n. Of what Canada, what the United States of what Portugal, of what Ukraine, what Estonia needs to work on in order to become a better and better civilization. And that to me, is sort of, I think, trumps my sometimes world micro worldview of like health software.
Reuben (00:53.48)
Yeah, It is easy to get focused on what’s right in front of your face and what today’s problems are. And for the last two years it’s been COVID, like there’s been so much attention on the world of like, how do we get through COVID as a population, you know, get back to normal, and then all of a sudden the invasion of Ukraine, like for a Ukrainian, COVID, is probably not on their radar as much anymore because they have much bigger problems.
And it just puts things into perspective that you’re right. Like, you know, health care and, you know, debates about health data are all fine and good. But, you know, if the larger picture of the planet is not healthy, then, you know, we’re all screwed anyway. So to echo your point there, so lots to think about for sure.
Juhan Sonin (00:54.46)
Yeah. So my, I’m not channeling Steven Pinker at the moment, you know, who has a fairly rosy view on how the planet is or how we’re doing as a species.
I can get a little down on what’s happening, but we still have to fight, and that’s the key thing, is if we have sort of rolled over like a turtle and said, I’m done, then we’re done. So we have to feel like we are fighting for something and then fighting for the right thing.
Reuben (00:55.16)
It’s about prioritization like you said. We collectively have to choose what are the most important problems to solve? And if we can align on that. There is a good chance we are going to solve that problem or find a way to mitigate or work towards a solution. But if everyone’s going in a different direction with different priorities, we don’t have much hope of solving the big problems.
Juhan Sonin (00:55.45)
Right on. Brother Reuben.
Reuben (00:55.46)
Cool, it’s been a real pleasure to talk to you. I would love to pick up this conversation another time over a drink. Next time I’m down in…
Juhan Sonin (00:55.58)
We need harder. We need to go deep.
Reuben (00:56.04)
Okay, well, we’ll. We’ll pick the poison and set a date for that. And. And for the listeners. If you like this episode, please subscribe to the MindSea newsletter and you’ll be notified about future episodes. Thank you so much for your time.
