A Blog by Jonathan Low


Feb 1, 2016

The Doctor Will See You (and Your Data) Now

All of your data, ostensibly stripped of identifying characteristics so that outsiders can not misuse it could lead to improved diagnostics, preventive care and more healthful longevity.

The question to which no one has a satisfactory answer is what happens when insurance companies, educational institutions, potential employers and governments insist that they are not outsiders, have a relevant, even essential need for the information in question, demand that it be provided - and then assign or withold prioritization, fees and other economic or public policy benefits based on the knowledge they have gleaned.

Is that fair, reasonable - or Orwellian and potentially discriminatory? JL

David Agus reports in Fortune:

Your data—stripped of information that can identify you to outsiders—can go into a centralized database, which will create an anonymized profile of you compared to others with similar features. That database can give you advice about what to do based on your information and what you might expect to happen, much in the way you’d plug a car into a computer to diagnose mechanical issues.
Today when you go to the doctor for a wellness checkup, you make an appointment far in advance and then visit the doctor’s office to get your data collected, including blood pressure, weight, and other routine lab tests. The only preparation you make beforehand is probably mental: organizing any questions you might have for your doctor and trying not to feel nervous about the visit. Several days after your appointment, someone in your doctor’s office calls you back with the results of any tests or lab work that was performed. Sometimes no one even bothers to call you if everything comes back as “normal.”
A future doctor’s visit, on the other hand, will be all about putting the data collected into context so you can know what’s best for you. You won’t go there to collect data. Instead, you will go in with your data. Some examples that I foresee: A week prior to your appointment, you will mail a biochip to your doctor’s office that contains a drop of blood from a finger prick that can be analyzed. Your smartphone and other portable devices, some of which will be wearable like watches or bracelets, will be equipped with all sorts of technologies to measure various features about your health. They can listen to your heart and send an EKG to your doctor, as well as transmit the sounds of your heart to a sound cloud to compare and analyze against people who share the same age and lifestyle. They can perform a retinal scan and detect an impressive array of potential problems, from high blood pressure and diabetes to cancer. The data will also have context. What did your blood pressure do when you were upset after a telephone call? How high did your pulse rate go with exercise? What was your heart-rate variability, which is a marker for stress?
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If you’re pregnant, those routine prenatal exams will also be transformed through technology, allowing you to monitor the health of your baby all on your own and send data to your obstetrician for review. You won’t even need to undergo an invasive amniocentesis or chorionic villus sampling to examine the chromosomes of the fetus. Instead, a small sample of blood will reveal everything a mother-to-be would want to know about her developing baby—and even more about herself. A new type of prenatal test widely available and intended to find genetic flaws in a fetus through the mother’s blood can also reveal previously undiagnosed cancer in the mother. This was an unexpected finding by scientists recently who were looking for a less invasive way to test a fetus—a prime example of the serendipity that often occurs in medicine.
With all these innovations, your doctor won’t have to spend much time collecting your information during your appointment. He or she will sit there with you and devise a game plan based on the data you provided before stepping foot in the office.
The whole notion of even going to the doctor when you are sick may change. If you think about it, it actually doesn’t make much sense. When you don’t feel well, you have to drive to an office and sit in a waiting room with others who may not like your contagious runny nose. In fact, there are now several startup companies with doctors on call to come to your house on a moment’s notice so you can get medical assistance at home.
Many of those old-fashioned house calls will be virtual—part of the rapidly growing field of telemedicine, which promises to bring doctors and nurses to you rather than having you travel to their offices or enter an ER for care. In some cases it entails live video consultations with doctors available 24 hours a day, who can offer advice, prescribe medicine, and suggest follow-up care. Some towns have installed kiosks where patients can enter and have their vital signs checked while talking with a doctor at a distant major university. All of this will help achieve the best outcome if used correctly.
I realize that there’s already some debate about whether doctors will want to deal with copious amounts of data provided by the patient, but that information ultimately helps reduce errors. A blood-pressure reading at noon in the doctor’s office is metric, but imagine coming in with three months’ worth of data: measuring it at bedtime, early in the morning, and when you are relaxed with a glass of wine. More data means less room for error. You may have missed the time of day when your blood pressure spikes if your physician took only one reading in his office. The slope, or the trend, in your data is more illuminating than a single data point. And the amount of data doesn’t have to be overwhelmingly large; the basics will suffice.
As straightforward as it sounds, data is becoming one of the most powerful health care tools around—helping to generate a staggering volume of new knowledge and technologies in medicine. Scientists are developing drugs to reverse once-fatal ailments such as heart disease and figuring out how to harness a person’s immune system to melt away cancer. They are designing computer applications to help us regularly and effortlessly track key features of our biological functions, including blood sugar, sleep quality, heart rate, blood pressure, stress levels, mileage, moods, and even risk for problems ranging from depression to dementia.
For the first time, we have at our disposal all the information we need to design much better health for ourselves—and, in turn, the health of the planet. Put simply, people living in the 21st century are the most fortunate of all previous generations. Welcome to what I call the Lucky Years.

Aggregate Data Sets Will Save You

Data-informed visits with your doctor are just a part of this new era. Another key element here is that all your data—stripped of information that can identify you to outsiders—can go into a centralized database, which will create an anonymized profile of you compared to others with similar features. That database can give you advice about what to do based on your information and what you might expect to happen, much in the way you’d plug a car into a computer to diagnose mechanical issues.
Imagine being able to learn, for example—based on your unique biology and within the context of a vast database of human experience, what to eat (or not eat) to avoid migraines, balance your blood sugar, and lose extra weight without classic dieting; when to stop consuming caffeine during the day lest you sleep poorly; whether you can benefit from a particular medication without side effects; what time of day is ideal for you to be outside or to break a sweat; why you wake up routinely at 3:10 a.m. and how to stop that cycle; which songs synchronize with your heart rate to calm it down; when to go for a walk or otherwise engage in a stress-reducing activity because it’s the time of day when your stress levels peak; and how much you should be worried about your levels of inflammation. You’ll be able to leverage associations made by virtue of aggregate data sets.
So if you’re a 36-year-old female who played soccer in your youth but smoked until you were 30, you’ll be able to compare your health profile with others who have engaged in similar behaviors. And not only will your DNA be part of your data, but also the active conversations that are taking place in your body that can be detected through a variety of measurements, from basic hormones that fluctuate through the day to the proteins found in your blood that follow a pattern and may, for instance, indicate a heightened risk for X or the need to treat Y.
Proteomics, the study of the body’s proteins, is a rapidly expanding new field at the center of some of the research I’m conducting. We’re exploring how proteins compose the body’s language and ultimately shape the language of health. Proteomics allows us to eavesdrop on that cellular conversation, which can inform better ways to prevent and treat disorders and diseases. Unlike your relatively static DNA, your proteins are incredibly dynamic. They change minute by minute in your body depending on what’s going on internally. I can’t determine from sequencing your DNA if you’ve just had a cocktail, what kind of foods you like to eat, when you last flexed some serious muscle, how well you slept last night, or if you are under a lot of stress. But your proteins, on the other hand, can tell. They can speak on your body’s behalf, divulging information that’s hard to find elsewhere. Through proteomics, I can start to look at and measure the “state” of your body. And it’s that 30,000-foot view that allows me to take in the whole picture, at a moment in time. DNA, while powerful and revelatory in its own right, cannot offer this.
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Stephen J. Elledge is a professor of genetics at Harvard Medical School and Brigham and Women’s Hospital in Boston. His research is leading to tools for tracking patterns of disease in different populations. His work is ultimately helping us understand the differences between the young and the elderly, as well as people from various parts of the world. A test he has recently developed, for example, could be used to find out whether viruses—or the body’s immune response to them—have a hand in chronic diseases, including cancer. This test, called VirScan, requires just a drop of blood and can broadcast nearly every virus a person has been exposed to throughout life, past and present. First reported about in the journal Science in 2015, VirScan can currently identify more than a thousand strains of viruses from 206 species, which reflects the entire human “virome,” or all the viruses known to infect humans, from the common cold to HIV. The test works by detecting antibodies, which are the body’s defense mechanisms against an invader. They are highly specific proteins that the immune system manufactures to combat germs such as viruses. And once you are exposed to a virus and have an immune response, the antibodies stay around and provide a “record” that you were exposed to that virus.
The application of this type of test will be astounding. We will be able to learn all kinds of things from documenting people’s exposures to disease. Some have compared this technology to the development of the electron microscope, which allowed us to have more resolution at the micro level and “see” things previously invisible. One application, for example, will be mapping out historical and current patterns of disease and seeing how certain diseases are affected by the type of antibodies a person has. We’ve long suspected that viruses may contribute to chronic ailments such as heart disease, asthma, and autoimmune diseases, the last of which are characterized by a glitch in the immune system that leads it to produce antibodies that mistake a person’s own cells for foreign invaders and attack them.

There’s a lot we still don’t know about the relationship between, say, overcoming a flu bug and being diagnosed with Type 1 diabetes or multiple sclerosis later on. But no such viruses or antibodies have ever been identified in terms of these diseases, and the research in this realm has been tricky. To look for them, we’ve had to single out suspect viruses and test for them individually. But with a test like VirScan, we can look at the big picture and use all that “big data” to find correlations between certain viral infections and the future risk of diseases. The technology might even help answer questions about cancer, which operates differently in different people. Perhaps the reason lies in which antibodies a person has and when they developed, which in turn affects an individual’s response to treatment.
Data mining for disease patterns won’t always have to rely on bodily fluids or invasive testing. There will be lots of opportunities to find connections in our complex biology from even the most uncomplicated observations. Case in point: In 2014 it was discovered that artificial sweeteners wreak havoc on the body, disrupting its microbial inhabitants, known collectively as the microbiome. That, in turn, can affect metabolism and blood-sugar balance. Although it was exploring the microbiome that finally gave us this insight, we could have known years ago about the relationship between drinking diet soda and increased risk for diabetes if another type of database had been in place to collect the information. Such a huge finding could have come from simply knowing what people buy and consume (lots of products made with artificial sweeteners) and their health profiles (lots of insulin resistance and diabetes).

An Inflection Point

The Lucky Years have been the destiny of our species for millennia. But there’s a catch to benefiting from this new era. You as an individual and we as a society stand at a historic crossroads. Only those who learn how to think, act, and behave certain ways will reap the benefits of the tremendous opportunities afforded us through the power of these medical revolutions.
Andy Grove, the former CEO of Intel INTC 2.74% and a pivotal early mentor of mine, once referred to an inflection point in the development of technology—a critical moment when the curve of progress vs. time changes, the things that used to work don’t work anymore, and new, necessary technologies become available. Individuals (or companies) that adapt to the shift and use those emerging technologies are wildly successful, and those that don’t adapt fail.
This concept is often used in business circles, but it applies to matters of health as well. The slope of the curve of progress vs. time in medicine is changing rapidly, and we all must adjust our thinking and behavior to take advantage of what the Lucky Years offer to fight against disease and premature death. The Lucky Years is about this inflection point that is happening in health—and how to respond appropriately to the ongoing revolution. The costs of not doing so are too high.


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