By Thomas Goetz January 19, 2010 | 12:37 pm | Wired Feb 2010
Life is complicated — especially when it comes to our health. Once we reach a certain age, we start to realize that health is a variable, not a constant. Our knees ache, our pace slows, and we’re diagnosed with diabetes or even cancer. And because the stakes are so high and the options so dizzying, we may stop engaging with our health altogether. We let doctors and insurance companies decide on our care, and we focus our energies on what we can control — our bank accounts, our relationships, but not, alas, our health.
That’s too bad, because health is really just a system of inputs and outputs. The inputs include the choices we make: what we eat, whether we exercise, how much we sleep, whether we heed our doctors’ orders. These decisions combine with other inputs, things that we may not even consider information and that we probably know much more about than our doctors, like our family history, where we live, our jobs, our stress levels, and so on. All of these inputs create one primary output unique to us alone: our health, for good or ill.
This means we have more control over our health than we might have thought. By monitoring and tweaking our inputs, we can influence and even determine our well-being. Taken all at once, our health may seem inscrutable; laid out in a sequence, it becomes a series of decisions, each with risks, benefits, and trade-offs. In other words, we can organize our health options into a decision tree, a method for factoring in our inputs, mapping out our options, and guiding us along the best possible path.
A decision tree is a simple idea — many of us learned to draw them (in the form of flowcharts) in elementary school. And decision trees are already all around us. They’re common in engineering and industry, where they’re known as algorithms. The pharmaceutical industry uses them to plan safe clinical trials. Financial-service quants use them to root out credit card fraud. They’re even used by city planners to design street patterns and map bus routes. In these cases, decision trees can be complicated tools, laden with mathematics and computer science.
But they needn’t be only for the experts. In an age of too much information and too little illumination, a decision tree can be a tool that nudges any of us to think through our options and to act consciously and with consideration. A decision tree can be as straightforward as a list of the pros and cons of a particular option that we complete before we act. It can be a simple and useful way to turn the health data we already have into a system for better choices and better outcomes.
And auspiciously, we’re at a moment when more data than ever lies within ready reach. Whether it’s personal genomics services like 23andMe or screening tests or self-tracking iPhone apps, each of us can draw on a wealth of personalized data sources that turn generic medical advice into customized health equations. And this is always-on data: Instead of checking in on our health episodically — when we visit the doctor or get lab test results — we can now tap into a constant stream of information and opportunity. We can minimize our uncertainty and maximize our control. We can build ever more sophisticated, and useful, decision trees.
In the following pages, you’ll meet three individuals, each facing a different medical quandary. As their experiences show, the right decision tree can bear the fruit of a better life.
Alexandra Carmichael has chronic pain. What’s causing it, and how should she treat it?
There are roughly 50 million Americans living with chronic pain, and for them, the hardest thing may be identifying the true cause of their problem. Scans and blood tests often only leave people in the dark and in distress. Pain sufferers may want to build a decision tree, but discovering what the true inputs are can be a lengthy and frustrating process.
At 20 years old, all Alexandra Carmichael knew was that she was in pain. Constant, steady pain — burning, stabbing, soreness — in her pelvis and genitals. For the next 10 years, she bounced among gynecologists who told her not to worry and specialists who couldn’t specify anything. She endured endless tests, including an ultrasound to rule out polycystic ovary syndrome and blood panels to rule out hypothyroidism, adrenal fatigue, and a high testosterone level. Time after time, the tests revealed nothing abnormal or conclusive. As a diagnosis eluded her, she got married and had two children. “I just wanted some ideas, some clue, some information. But there wasn’t any that I could find,” she says.
Finally, in 2006, a new doctor gave her an accurate diagnosis: vulvodynia, a condition characterized by persistent pain in a woman’s pelvis and genitals. It can be intermittent or constant, and it makes many aspects of day-to-day life, including sex, seem almost impossible. Despite the fact that about 16 percent of women will suffer from it during their lives, it is a woefully understudied condition. “It was a huge validation that it was not all in my head, that there was actually a name for what I had and that other women had had it,” Carmichael recalls. “It freed me up to focus on how to treat my body rather than try to figure out what I had.”
But her ordeal wasn’t over. She’d spend another two years sorting through various treatments, each one a Hobson’s choice between trying something or trying nothing. After a battery of other tests — cholesterol, thyroid, blood panels — she discovered that her estrogen levels were low. Eventually, she and her doctor came up with the right level of hormone replacement therapy to allow her to live “95 percent pain free.”
Carmichael’s experience led her to cofound CureTogether, an online health community where people can share their experience with more than 400 conditions and compare their symptoms, treatments, and results. The information is robust enough that the site has actually advanced research into vulvodynia and several other conditions. “It took me 10 years to find out what I had, and it took two years to find the right treatment,” she says. “That simply wouldn’t be the case anymore. It would not take anywhere near that long for somebody who finds CureTogether. Now there are other women like me, sharing ideas and data. It shortens the decision tree considerably.”
Alexandra’s Decision Tree
Alexandra Carmichael spent a decade looking for a diagnosis. It took her another two years to determine the best treatment options.
Wired executive editor Thomas Goetz (email@example.com) is the author of The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine, to be published this month by Rodale.
Original article at http://www.wired.com/magazine/2010/01/ff_decisiontree/all/1