Datica Thank you for taking the time, Jordan. I know you are always super busy.
Dr. Shlain: I’m never too busy for ideas.
Datica Excited to talk to you today. I know most of the topics are about Tincture. It’s very cool conceptually with all the content that you are starting to build. Tincture is about sharing big ideas and bold ideas for healthcare without the thought of money or potential reimbursement. What is the long-term vision for Tincture?
Dr. Shlain: Right now in healthcare, especially in the world of innovation where everyone is building an app and has a new innovation, a new improvement, there are so many overlapping spaces by which somebody views healthcare. It can be a technology, policy, disease or process space. There are so many things out there and they all live in their little domains. If you look at publications, they have 95 different subcategories of what they can focus on, whether it is insurance, pharma, hospitals. I think all of these things are connected; they are not separate. If you affect one, you affect all of the other ones, some meaningfully and some not meaningfully. John Muir, who was a famous U.S. explorer said, “When you tug on a single thing in nature, you realize that it is connected to everything else.”
I feel like in healthcare, being a physician and on the front lines taking care of people, I see how everything I do has these broad implications on the person, the families, the payment systems and the pharmacy. What Tincture aims to do is take all these bigger ideas and bring them into one place and they don’t only need to be about technology and digital health or drugs, devices or policy. In order to have a real conversation about how all these things fit together, you need to put them in the same room.
One of the medical words I use to think about this is — healthcare is a fortress. If you are not living in it like I do and like you do, it’s hard to know what goes on inside that big fortress up there on the hill. The truth is that the fortress up there on the hill is dark inside and when you walk inside that dark fortress, you will see little lights shining on various walls, illuminating a frame or corner of it. Ultimately, those lights are smart people trying to say, “Hey, look over here; something here is important.” But the truth here is that it’s mostly dark and you have some illuminated walls. How do you take all those lights and put them in a pile in the center of a room and light up the whole thing so that everybody can see where all the rooms, walls, and doors are, so you can construct a way of thinking about it to try to solve for all these things, individually, but also simultaneously. If you fix this thing over here, it will cause a thing over there to get disrupted, either intentionally or unintentionally. You need to be aware of it. You can’t just be blind to it. So it’s really that place to bring together ideas under one roof, and to let other people start to cross-pollinate those disciplines and those fields together to come up with their own way of thinking about how to solve this complex problem.
Datica You talk about bringing disparate groups together —not just physicians, providers, technologists and digital health programs, but academics, designers and a broad landscape of ideas. How do you go about engaging those who might not necessarily be in the fortress, or don’t know that they are in the fortress? How do you go about doing that?
Dr. Shlain: Everyone is in the fortress. As soon as you are born, you are born in a hospital, well some of us are, and so you are in it from birth. At some point you will stop by a pharmacy, you’ll have a headache, you are going to be in it.
Everyone is a potential contributor, but it is really those that have an insight and it’s not a point insight, but an insight that wraps around. I have an antenna up and I have a network of antenna’s up of people that that are part of this collective. When they find someone, they are not stuck in the paradigmatic conundrum of this thing. If someone has spun out of it and has a different way of thinking about it, we would like them to write that down and present it and we are going to build an audience.
This is not a commercial exercise; it’s an idea exercise. It’s open source ideas and open source storytelling to try to get more people to build upon the ideas of the last person – to try to start to come up with a theory. These people want to be heard. They are somewhere out there screaming at the top of their mountaintop and I’m trying to create that place where they can come in and have another forum.
This isn’t something that’s going to be an overnight success, even if it is a success or not. I’m trying to take a very humble approach to this. I think if you get great people with great ideas and there’s no commercial element to it and it’s just an idea space, I think quality wins in the end. The quality of these ideas we curate are all important ideas; they all have a place in the space. This is a very long term exercise and because there is no money attached to it, outside of my own personal time and everyone’s personal time, it’s really a passion for change that is driving this. It’s not a commercial bit.
Datica In terms of specifically Tincture and open source thinking, is some of the vision to have these broad ideas come in and then other people start to reference that and iterate on all these other ideas and boiling them down, where an original post almost becomes a repository?
Dr. Shlain: I would say that the analogy to software is right. This is called thoughtware, if I could make something up extemporaneously. This is thoughtware that people can build upon.
I used to be a commissioner here in San Francisco and if you hold a hearing, people can come and express their views, pros and cons, and you see a lot of these blogs where people get passionate about liking or not liking something. While I do think that’s interesting, it’s insufficient because people get dogmatic and even “hogmatic” to coin a new term here. Which is they go whole hog into their dogma and they just can’t get out of their own way to realize that maybe they are wrong or maybe they should think about things.
I’m not interested in people who are hogmatic or even dogmatic about their principal; I’m interested in people that are willing to open up their own mind and let other thoughtware get in, so they can build upon their own thinking. A lot of these people are really bright and they are smart, but they are stuck because they have constituents that want this thing. A lot of people can’t get out of their own way and they don’t know that just by doing something different, there could be a whole other thing on the side of it. People get comfortable with these layers of protection they’ve built around their thinking. I really want to create a place for it to be okay to get some other thoughts into your thoughtware and let that kind of grow and evolve, so that yours and everyone’s thinking can change.
So, I’m a doctor and you are a patient and I ask you, “Hey, do you want the best outcome the fastest with the least amount of adverse reactions and side effects and drama?” Your answer is going to be yes. I bet if you asked a million people that, outside of those with mental illness, the answer is going to be yes. Now if you ask all the doctors who are taking care of all those people if they want to get the best outcome for their patients, the fastest, with the least amount of reactions and side effects, the answer is 99.9 percent of the time yes. So we have this situation where what you want and I want are the same thing. And we are both in the same room and we both have the cognitive and financial abilities but we can’t get it. Why is it that two people who want the same thing can’t get it?
I would argue that part of it is the principal agent problem, which is an economic principle — as soon as you get a third-party that deals with the money, it throws a wrench into two people getting what they want, especially when they want the same thing, because the third-party may not want what both of those first two want. You have to get microscopic and macroscopic and then you gotta get metascopic — another new word I just made up, which is you have to get meta from all these views to get a whole new view.
Datica Why do you think people are only focused on technology and not on healthcare technology? Why do you think they are so interested in what you are trying to do with Tincture and what Tincture is?
Dr. Shlain: It’s clear that technology had profound influence and impact, sometimes positive and sometimes negative. People that are poor in Africa have a cell phone that empowers them, that gives them a sense of liberty, freedom and access and the ability to explore. Why is Google the biggest? Because you can explore. You give someone an exploring tool and that gives them a sense of agency that’s really hard to get in any other place. I think there are a lot of the technology people out there realizing that healthcare has been the last bastion of willingness to accept technology from the standpoint of redesign, not from the standpoint of incrementalism and improvement.
I was speaking at a conference with big systems people and they started talking about their innovations. It was a Health 2.0 conference so it was ostensibly digital stuff, and they would say, “We’ve added more nurse lines to pediatrics or overnight calls.” I wanted to say — that’s not innovation; that’s improvement. I’m all for improvement, but there’s so much room for improvement. You could spend the next decade on improvements. I’m interested in innovation in the context of where software, hardware and thoughtware, and all these other things, including architectural buildings in the way you lay things out.
We could redesign something so profoundly different than what exists today that we really honor everyone’s place in this chain of health, wellbeing and wellness. I often draw the analogy to a building which is…healthcare was not designed. We put it in hospitals because sick people needed to go somewhere and a hospital was this foundational element and then physician communities and societies were built and so fast forward 150 years later. We have like nine stories that have been built upon this foundation and the foundation is wrong. Each story was a crappy version of attempted improvement and it was improvement on the prior story but the elevators were crooked and they don’t work and the stairs are kind of janky and the lights don’t really work in some places. So what we do is to say, “Hey, let’s add another story and we’ll add an elevator that will go from the bottom to the 9th story and we’ll just build something on the outside so we can get from the foundation to the 9th floor faster and that’s improvement." But it’s not a redesign; we did not build a new building.
The other important piece to think about is we used to be a steam economy. We did not used to be an electricity economy. When electricity became the new big thing, we had to build a completely separate infrastructure for electricity. It took 30 years to build the infrastructure and transfer the steam to electricity over. 30 years! But we are living in this economy where we wonder where this app is that’s going to change the whole healthcare system. Okay…it’s not going to happen, guys.
You cannot comb the hairball of healthcare. There’s no technology comb big enough, strong enough or powerful enough to comb the hairball because it’s a procedural hairball and there’s an incentive hairball, so what I think we need to do is to redesign from scratch. If we could imagine what someone had to go through in a day with no illness, will illness, with a family member. I mean, how should they go through their day? Where should technology be proactive and where should it be reactive? So I think we should almost redesign healthcare from scratch. This is a hard problem to solve. And then once we have how we think it should work and have designed this system, then we need to transfer the old system over to the new system and that may take a decade or two. But if we have an attention span of a technologist here, we are constantly going to be building new apps versus redesigning a new thing.
We need to take a step back and realize that this is more than a generational change. It’s a true revolution and evolution at the same time. It’s not a broken thing we fix with a couple of wrenches.
The other important piece is if you are at a company somewhere and you want to have an offsite and think about redesign, you could tell everyone to come to this offsite, we’ll shut the company down for a day and all think about this. But healthcare is like a flywheel that doesn’t know what time it is. It’s always spinning and spinning faster. So you can’t stop the healthcare system to ask what it should do. That’s why when Epic gets installed at big hospital systems, they have to phase it in; they can’t shut the hospital down and do it all at once. It’s like trying to change a carburetor on a driving car. You’ll spend more time in trying to do that rather than just redesigning a system from scratch and then transfer it over. You’ll take the same amount of time but you’ll get a much more elegant system at the end, if you do a redesign, which requires a lot of thoughtware, a lot of thinking, a lot of smart people. What’s the end state? If you had a magic wand, what would this end state look like?
I don’t know what this end state should look like; I have some ideas on it and how we should starting thinking about it and what technologies need to be used, but there are a lot of technologies that aren’t technologies — it’s called empathy. It’s people helping people and that’s not technology. That’s me looking you in the eye and saying, “I’ve got your back on this one; we are going to do this.” That’s social technology. So we need to think about all these things.
Datica We really do need to lay a new foundation and who knows what that foundation looks like.
Dr. Shlain: It’s a false metaphor to talk about low hanging fruit, because I believe low hanging fruit is connected to high hanging fruit. By plucking off low hanging fruit it also makes the high hanging fruit get higher, so you have to try and map low hanging and high hanging together and try to solve that problem simultaneously. When trying to solve one equation in a mutli-variate equation, you need serial and parallel thinking simultaneously.
I call it serialthinking, which is another new word. It requires people to bend the thinking and not break it. You have to bend people’s ability to think through these problems and usually people solve problems by grouping. I looked at a McKinsey report or a Deloitte report recently presented to a hospital and it said based on interviewing all the people, here are the problems you have. Here are the main buckets and here are the sub-buckets; and these sub-buckets had all these specific complaints. So they said, “Let’s tackle this one and this one and this one.” I was going to give a keynote at this healthcare center and they asked if I could use this report that they got to build your keynote off of? I looked at it and thought, these people don’t know that this thing is connected to this thing that is connected to this thing. There’s this siloed thinking that we have and we need to get into Lego thinking and how things are connected.
Datica The challenge in the industry I see right now is with funding in healthcare, it’s hard to take on high hanging fruit when you have a 12 or 24-month runway, which is what a lot of companies have today. So a lot of these venture-backed companies are going after this low-hanging fruit because you almost have to to get to the next stage of growth as a company.
Dr. Shlain: What I’m starting to see is that a ton of these digital health companies are failing all over the place. There’s yet to be the great big reckoning because there’s still so much flowing in. The reckoning will come in stages because some companies will be able to solve the problem and they’ll get the notoriety that will cause people to think that this will work, but for everyone that you see make it, there are like 900 that didn’t. People don’t read about the ones that didn’t, so there’s a bias in the media towards success not failure.
But I’m starting to see these healthcare systems that are going to be disrupted by these startups, they are able to take a long-term view on change and they are starting to create their venture funds, which will specifically create the alignment between the investment and their system that put up the money to actually have a long-term perspective on change. It’s not the 12-month, 24-month runway that most startups face. The incumbents are getting in the game because Medicare just passed CCJR, which is the first domino in a long list of dominos to fall around bundled payments. You are going to start to see these systems forced to redesign the way they do things because money is intrinsically tied to their success or their failure on this, because it’s all been fee for service. If Obamacare has done nothing it has started forcing people to look at outcomes and not transactions.
Datica You are starting to see way more systems, Providence is one of them, start funds and start funding innovations, which gives a much longer term view. I’d be curious to see if you think startups are failing because of interoperability.
Dr. Shlain: I’ve talked in probably 10 cities in the last 10 months. In all these different talks wherever they are, there’s usually a pitch session where 10 companies get 2-5 minutes to pitch. My worldwide epiphany is that it’s the same 10 companies. [Laughter]
Wait…let me clarify. It’s not the same 10 companies, it’s the same ideas by different companies in different cities.
What that tells me is that the barriers to start a company are ridiculously low and the funding is ridiculously there, so people want to get in the game; they don’t want to miss out on this next wave and people are betting on horses to figure out which one is going to win, which is fueling this massive number of horses out there running around. But a lot of the horses are identical. Obviously healthcare is local and local markets have different needs and nuances…you need to almost be of part of that culture to solve that problem.
The thing that is impressive to me is going back to my hairball metaphor. I have this daughter who always gets these crazy dreadlocks in her hair. If I try to comb her hair from the base of her scalp out, that comb hits that hair and I’m not going anywhere. But if I go to the end, I can comb a little bit of the tangle toward the end. And what these startups are doing is they don’t realize how complex and tangled healthcare is, so they go after these hairs they can comb, and they prove that they can comb them, but they can’t get any more upstream than that. They are stuck. That’s where you need a conditioner that’s made from everybody’s input to lubricate those hairs and pull them apart to rethink about it.
All these entrepreneurs are solving the distal end of the tangle, which is not hard to do, but you can’t comb from the head down. You’ll be screaming and crying. So I think all these companies are tackling these relatively simple problems that they can untangle with technology. But it will only get you so far. You have to go into the fortress and get everyone to agree that the better way to do it is a new way to do it.
Datica What topics are you seeing on Tincture that you are most excited about?
Dr. Shlain: I’m excited about watching the design people and the poverty people. Like people trying to tackle the issues of poverty and the technology people all trying to look at this problem through that lens because the most vulnerable populations don’t have access to anything and they are the ones that basically cost us all this money. Those are the groups that are having a dialogue and I’m having a dialogue with them in the background.
Then the pharmacy people come in, so we are going to do a 10-part series called the “Data to Data Democracy” and there will be a bunch of people interviewed talking about how we think about liberating data so that it’s more lubricated and flows freely. Then there’s another 10-part series that’s being spun up right now on the “Future of Pharmacies, Pharmaceuticals” and how that could be redesigned to better enable interest. Like Thomas Goetz of Iodine is trying to solve a crowd-sourced version of medications, so when you start to put these things together, you can envision the narrative of how this could play together in the future. What does this tapestry look like? It’s early days right now, but we have a lot of things in the hopper and we’re always interested in getting people that want to be part of this – whether they are interviewed or experts like yourself down in the deep layers of HIPAA and keeping things private and secure. Those are things that are interesting to me. You are starting to see different groups of people that would have never interacted with each other.
Datica What do you think of when you talk about data and healthcare?
Dr. Shlain: I’m in a band as a guitar player and my drummer is John Battelle, who is the co-founder of Wired magazine and who is truly the inspiration for Tincture. He said you have to create a Wired for healthcare in a non-commercial way. When I play music, the notes that I have available to me are free — they don’t cost me anything. But as soon as I package them and create a song, that’s IP. It’s copyrightable; it’s syndicate-able; I can sell it and I can determine what the rules are around this thing.
When I think about healthcare data, I think about the fact that blood pressure is free, but your blood pressure with your thyroid condition and your temperature — I’ve put them all together, I’ve created a three-dimensional structure that is your IP. It does not belong to anybody but you, and you should, like music, be able to syndicate it, you should puts rights around it and I don’t think other people should be making a crap load of money around your data without you getting a piece of it because it’s yours!
I feel also that the physician is complicit in the curation of this stuff. If I spend a lot of time and energy putting this stuff into the EMR as soon as I hit SEND or SAVE, I have no idea what they are going to do with that. And I guarantee if you go to HIMSS, you’ll see multiple large vendors with a wash of cash and million-dollar booths, selling and trading and analyzing your data. Look, I’m okay if you want to be a data donor. If the NIH is doing a study on Hepatitis F and you happen to have Hepatitis F, then you should be able to donate your data to the NIH and let them have whatever they want to do with it because you want an answer to your problem and you want that to go to science at large.
This is a controversial issue and I actually met with the CEO of the RIAA, which is the Recording Industry Artists’ Association, in DC a couple of weeks ago to talk about how they think about when you make a song. It’s the rights of the musician and in this case with healthcare, it’s the rights of the doctor and the patient and their data, so I think we need to have an honest conversation about this stuff.
There was a post done today at MobiHealth News, where I was at the Center for Connected Health at Harvard on Friday, on data rights and privacy. I said where is the nutrition facts label on apps? You know there are icons on whether you are considering a good movie or a bad movie. Food is complicated these days. A banana used to be a banana and you used to know what was in it. Now you buy a packaged thing and you don’t know what’s in it. They’ve distilled all these complex things into this standardized label. So where is the data facts label on apps? Terms and conditions are the super long things that nobody reads because no one can understand them and you need a lawyer to interpret them. Where is the simplified version of that? In my world the simplified world includes three icons: 1) is a guy standing there with one mosquito, 2) a guy with five mosquitoes, and then 3) a guy standing there with 10 mosquitoes. That means that if you sign up for this app you are going to be bothered a lot by various ads and emails and texts that you don’t even know about, so it’s kind of like that mosquito quotient. So, if you are going to use this, there are going to be repercussions. The other one I envision are icons of people with their hands out of their pockets, with their hands in their pockets, and in back pockets — so these guys are all taking stuff from you. And the last version is someone holding you upside down and everything is falling out of your pockets because they have everything because you gave them the key to get to all of your kingdom of data. So, there needs to be a simplified ways for people to assess and access these tools that exist out there. They just need to be informed.
We just need to be honest and transparent and we just need to stop trying to hide the ball, because in the end it is not going to work. Transparency is going to win in the end and the bad guys are going to get called out. Look at VW — they thought they could hide that ball. Everyone is going to get caught. I think Twitter should charge $1 a month subscription for example to not get these ads and I’m okay to pay something not to get the mosquitoes, but right now people are afraid to charge the dollar because they want to give it away for free. I think people have a tolerance to pay a small fee to not have all this extemporaneous and invisible drama to hit them from all sorts of sides later in life.
Datica I’m super excited to read the series. Is there a thought that Tincture would start convening groups to have more collaborative in-person discussion in the form of a conference? Or partnering with a Health 2.0 to do a conference?
Dr. Shlain: Great question. I actually hosted a dinner for 16 people on my dime at Harvard in Boston — people from a Harvard PhD stem cell biologist to founder of PatientsLikeMe to the head of genetics at Harvard. I’m in the background; I want there to be no ego in this. I want this to be an idea element. I’m already convening people all the time and that’s where I get the ideas and I find the people to contribute to Tincture on the one hand. On the other hand, I do envision a place in the future where I could convene a lot of these big thinkers on what is redesign and what does change look like? Not pay for play. I’m not interested in people trying to pitch their product. If their product represents an idea, I want to hear about the idea. I want to have that idea matched to a bigger system design. So maybe. I’m aspirational about that, but cautiously optimistic that we could get there but I would never say that out loud. That’s my goal, because I tell people that I’m executing on my grand plan, but I don’t know what that is.