Leslie Saxon wants to know what your heart rate is. Saxon is a cardiologist and Founder/Executive Director of The USC Center for Body Computing, leading an effort to connect medical implants to the Internet to better monitor and treat people’s health. Speaking at a Wired Health event in the United Kingdom earlier this year, she argued that Facebook should be given access to all of our medical data in order to help doctors better understand certain diseases through biometric data. I recently spoke to her about her work and how she thinks the Internet and the proliferation of computer phones will change the future of healthcare.
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How did you get interested in this idea of connecting biometric implants to social networking? How does all this work?
I got into this field when defibrillators became wireless, meaning we could put this $30,000 device into someone and they could basically transmit data from home with this supercomputer in their chest. I realized we could figure out how to better diagnose things in real time. I spent eight years of my life researching that and it was incredibly productive, then I got interested in this “anywhere, anytime” concept that you could use the dominant computing platform of our time—the cell phone—to deliver a lot of this care. The idea that you could use social networks to share the data with everyone who was relevant to the patient was both a way to provide data to everyone all the time, but also a way to help motivate and engage patients.
Oftentimes, you’ll see a patient and they have a vague symptom, you see them for .00001 percent of their life and you have to contextualize, use your experience, do some guesswork and diagnostics to understand what’s going on. Your car has over 100 sensors, they’re wireless, it’s continuously monitoring itself and telling you when it’s going to get sick, providing you with this A.I. so people’s cars don’t break down as often anymore. One of the things that’s really interesting about digital health and sensors is that we haven’t seen a lot of the data that’s being captured before so we’re not sure how to contextualize it. I’ve been doing cardio electrophysiology for over 25 years, now that I’m monitoring some of my patients all the time, I don’t know what some of this stuff means. We’re going to have to build these data sets, track clinical events, then go back and contextualize it—say, oh, okay that was a sign of that. Because I do procedures most of the time, I only see outpatients maybe one day a week, maybe 30 or 40 people. Really I only need to see 10 of those, so a lot of those people don’t need to see me. If I had this virtual care app and they were streaming their biometrics to me they wouldn’t have to come in. Then I could focus on those 10 patients who really did need me and everyone would be happier.
USC football players were monitored for biometric data during a game. Image via USC Center for Body... [+]
How do you go from building this big pool of data to actually being able to use it to motivate behavior change? There have been so many examples of how simply making people aware of health information isn’t enough to motivate a change in behavior.
You don’t change your behavior just by being told by some paternalistic model of medical care that you should do something differently. In my view, you change your behavior through self-discovery and then realizing you feel better because of it. How do we help people discover for themselves that they should quit smoking? Everybody wants to quite smoking, nobody wants to be obese. For some reason, they’re stuck. Healthcare and illness is everyone’s horror story, it’s everyone’s nightmare. We need to make people the heroes of their healthcare stories. We can do this digitally by providing them with these self-discovery tools, with entertainment tools, with social support. We built a quit-smoking app that tied people into a social network and allowed them to quantify their cigarette smoking. It was as powerful as the best medical treatment—the nicotine patch and antidepressants. One of the things people said when we queried them was that they wanted to stay in the community after they’d quit to help sponsor others and kind of evangelize for it, sort of like the AA model. That’s a very powerful, emotional thing.
A lot of my thinking about this question has been inspired by my brother, Ed Saxon, who’s a movie producer [The Silence of the Lambs, Philadelphia, Fast Food Nation]. He’s helped me to evolve my thoughts about how to allow people to be the heroes of their healthcare stories. People addicted to cigarettes or dealing with obesity—these people aren’t happy campers, they’re walking around in fear and confusion. So how do you use all these tools to get them to change. You surround them with this culture of engagement so they’ll want to do it. There are some economic forces that are just coming to play for a lot of people. With the Affordable Care Act people have more of a dog in the fight.
I interviewed a health economist a few months ago and he made the point that stress is an indicator in more fatal diseases than anything else. Obesity, smoking, and all of these other lifestyle issues can be nested inside this larger category of stress. Which to me points toward some fundamental class pressures driving a lot of behavior that might not be so easily addressed with social networking incentives.
Poverty is not healthy, for sure, but stress is very individual. There are a lot of reasons being poor is not good for your health--the stress of not having enough money or not having access to healthy food, or education to know what’s healthy, not having access to prenatal care, not being able to take off work to get medicine, having an inferior health system for care once you enter it. One of the great things with digital health is that we can deliver healthcare, diagnostics, and information to a person regardless of their economics. Almost everyone has a smart phone or at least a phone capable of text, so we can engage that patient even if they’re not documented or in this country illegally. We can still remind them to take their medicine and help to get their medicine to them.
Indigent people tend to need the most care. They tend to delay care, they tend to have more manifest disease, they tend to not be able to come in and get care because they’re trying to sustain food and shelter for themselves, so those people need these digital tools more than anyone. You can do a ton with them to meet those populations where the need is. With more and more people watching videos on their cell phones you can create medical content and education through mobile. I don’t tend to see any of the populations we work with as victims. This is their situation. We try and meet their needs and empower them wherever they are. We want to save everybody time and do everything efficiently so the patients are comfortable and not alienated and afraid. That’s how you improve healthcare outcomes. And no matter how indigent or seemingly disenfranchised somebody is, everybody has someone they can digitally engage with as a supportive person. That’s huge. Everyone needs that. That’s the thing with digital health, it doesn’t have any borders.
Is this going to make healthcare jobs harder to find in the future, making a lot of administrative and bureaucratic positions less necessary?
It’s like anything else that gets disrupted. Look at the music industry, there are fewer traditional record companies but there are other entities that spring out of that. There are other jobs created that tend to be interdisciplinary. There are going to be many more jobs in healthcare that deal with user experience and user interface. There are going to be more artificial intelligence support businesses, more virtual services that will need real medical people informing them. So the jobs will just shift a little bit and change, but I think the number of jobs will probably increase, it’s just the jobs will be different. Medicine up until now has been ready to pop, it’s been very segregated from the Internet of Things and digital evolution in general. It’s just about to be integrated and that means there will be a lot more multidisciplinary integration of things, which in my view will make things much more consumer-centric, much more patient-centric.
So much of modern healthcare seems to be about extending lifespans. Has the business of healthcare became over-obsessed with extending a person’s life instead trying to improve people’s quality of life in the present?
There’s so much data on that, most of the money we spend on a patient’s medical care is in the last six months of their life. But every human being deserves an individual and very personal assessment of what their quality and duration of life should be. If I have an 84 year-old patient who has a great life and wants to get their heart valve replaced, who wants to buy a $30,000 defibrillator and take that risk, I want to be able to make that decision with that patient and their family, eyes wide-open. No one in society should be able to make that decision for the patient, except the patient, their family, and their doctor. Everyone wants to be able to make that decision for themselves.
But this idea, like in some countries with socialized medicine, that nobody over some certain age gets dialysis or a renal transplant—I hate that. We’ve never done that in this country and I hope we never do. We have an individualized approach to people and I think everyone deserves that if the technology is there. I’m not about ending life early, I’m all about keeping people alive as long as possible, I don’t care how old they are. I want to give them a decent quality of life and be their advocate. The whole idea that we are going to be aspirational and live longer is what has driven a lot of health technology in this country—artificial hearts, cancer treatments. If you have some waste and overcare with that—okay, I’ll take that. If you institutionalize undercare, the only people who get care are wealthy, because they can afford it anyway. Everyone else gets undercare.
I can’t stand that constant stuff in the press about how we’re wasting money, how we give too many CT scans. Guess what? Sometimes you do a CT scan and it’s negative and if three months later a person gets symptoms, you should be able to do another $300 CT scan. Because guess what? They have a new symptom. Imagine you have colitis or intestinal cancer, do you really want to wait six months for your surgery? I don’t think so.
The counterargument is that the quality life in countries with socialized medicine tends to be higher than we have in America. Part of my family lives in Denmark and I’ve seen a number of specific instances of medical inefficiency—long waiting times for surgery, misdiagnosis—but at the same time the quality of life overall and access to a reasonably good level of healthcare is much higher than in America. You get things like long-term paid maternity leave, child support from the government, higher base salaries for many jobs, better infrastructure and public transportation, and the payoff is less efficiency in some parts of the healthcare system but a higher level of health in the overall population.
It can be pretty harsh here. I’d rather not have the entitlements, but there’s no question about it, we don’t have a big enough safety net for those most vulnerable. The idea that any child can live in poverty here or not have enough to eat is just appalling. I see my German friends all jazzed up about their six weeks of vacation a year, and it sometimes seems to keep them from working the other 46 weeks a year as hard as they can. Providing high-end patient care requires a lot of motivation. It’s a service business. You need to reward people who do that, not encourage them to undertreat people. It’s hard and they will undertreat people if they’re not motivated to provide very high levels of service all the time. It’s a question of how you do that. I don’t think that’s done particularly well in countries that get held up as models for good healthcare. The digital stuff could really make a huge difference in access and continuous diagnostics. Digital takes 90% of the cost out and adds 90% more efficiency. That’s a good thing, that means more money to do other things like cancer discovery and working on artificial heart pumps.
Do you think the benefits of collecting all this data outweighs the risks of privacy violation?
I think it’s going to be very important for there to be governance around these things, but I think it’ll be really important to integrate and share this data. The debates are thought-provoking and we should be asking about a lot of these questions. But it’s absolutely important to be able to collect this data for medicine. How it’s monetized, who sells it, who owns it—all that stuff has to be worked out. But it has to be done if we’re going to realize the profound health benefits of it. Apple’s approach with the HealthKit was interesting. Let’s say they get 10 million users in the first year, and let’s say all the data doesn’t go to some cloud, it all resides on the phone and people can choose what to share. Somebody may elect to share their blood pressure but not their weight. That’s fine, that’s an incredibly autonomous and privacy-protected approach. It’s just not as promising from the standpoint of making major global health observations.
The big data piece is the promise. Being able to get all this data in one place, analyze it, provide A.I. to it in the same way Amazon does to determine preferences, that’s what’s going to be the thing that delivers healthcare to the next level. That’s going to be the thing that allows us to quickly enhance discovery, advances clinical trials, and helps people to tell their healthcare narrative, the story of their body computer. That will keep the data flowing. In the early days of a lot of these medical apps, people use them then the usage drops off because there’s no deeper experience connected to it. You’re not telling your healthcare story, you’re not getting engaged or being entertained. It doesn’t do anything compared to what something like Spotify does for you, recommending other artists and things like that. That’s the concept for our solutions. We’ve just developed a photo sharing app attached to a heart rate sensor, so you have all these people who use Instagram, they’re younger, they’re largely global. Right now we’re going to allow them to put their heart rate on every photo they share. It’s this idea of providing a window into your soul, into your heart, by attaching this picture of your heart health to some picture of food. At the same time you’re building your medical record in the cloud, we’ve got all that data on you. If you start the timing with someone like my kids—one’s 11 years old, the other’s 16—suddenly you’ve got an unprecedented amount of electrocardiograms of 11 year olds. The power of that is crazy, that’s what attracts me to it.
*This interview has been edited for length and clarity.
