It’s important to remember, though, that genetics is a very new science, and that getting a scan today is the equivalent of buying the first generation iPod – it’s a work in progress, and will get much better as time goes on. There’s a lot that science doesn’t know yet about the exact influence of DNA on our health, and the journey is part of the ride. But it’s a rare opportunity, unprecedented, perhaps, in history, that the general public might be granted unfettered access to experience science as it happens. It’s not something that everyone will be comfortable with, but we shouldn’t underestimate how profound this opportunity is.

So when it comes to choosing a service, beware the hype – and use the same sort of common sense that we use as consumers apply when we choose a bank, a cell-phone provider, or a grocery store. Those companies that promise to give definitive insight into the future, the “if your kids have this gene they’ll be Olympic athletes” sort of promises, are overpromising and exaggerating what science actually knows. They may act as if our DNA was a crystal ball, but the fact is, it’s not: while our DNA has a large influence in our health, it is largely just that – an influence, along with all sorts of other factors like our diet, our environment, and other behavioral factors. Our health, in other words, is an equation where our DNA is just one factor, one input. The legitimate services understand this, and make this clear. Indeed, it’s a selling point for them: the fact that we can respond to our DNA, that we can actually use it to inform the way we live our lives, is part of the rare opportunity we’re being granted. Rather than fear this opportunity, we should consider it as straightforward as any risk we’re alerted to in life.

The fact that DNA is not destiny is, to me, a reason to consider getting a scan: understanding that we can act in response to our DNA, that we can change our lives to minimize the predispositions that our genes may create, should be a source of empowerment and reassurance. Our DNA is just the blueprint for our lives and our health. How much we choose to follow the plans or tweak along the way is up to us.

To me, the role of DNA in our health is no different for most people than any other blood test result or risk factor – it’s a best guess, a probability that we can choose to heed, or can choose to ignore. Medicine is always a numbers game – it’s usually just cloaked in the white-coat authority of a physician.

For those of us who want to get a head start on health, who want to live with a little more purpose and precision, then a DNA scan is a great place to start.

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And here are some quick thoughts:

The controversy seems to have stirred the FDA to assert its authority – and that of physicians – over any and all medical metrics. As readers of The Decision Tree know, I have little patience for the argument that we need doctors as gatekeepers of our genetic information. This isn’t a drug, and this isn’t a device – it’s information about ourselves, as ordinary as our hair color or our waist size or our blood pressure – all things that we can measure and consider without a doctor’s permission.

I’m amazed, in many ways, that this discussion continues to be perpetuated in terms of “can people handle the truth?” – because that line of argument is flawed in so many ways. I’ll offer a few: 1) People are more capable of handling genetic information (and other health information) than they’re given credit for. 2) Most doctors aren’t experts in genetics anyways. 3) If you wait for doctors to give us this information, we’ll be waiting for something like 17 years. 4) This is our information, about us, and we own it as much as we own our thoughts and our values. 5) We may want to ask doctors or genetic counselors about what our DNA means – I’m not saying it’s easy to understand – but that’s entirely our choice.

I’m sincerely fearful that, now with Congress deciding it wants to inspect this stuff, that the FDA will feel obligated to regulate and shut us off from what is rightfully ours. To me, getting access to this information is a civil rights issue. It’s our data.

Some in the government see things clearly here. Donald Berwick, President Obama’s nominee to run CMS – the agency that oversees Medicare and Medicaid – has defended the rights of patients to own their information. The FDA is now run by the well-regarded Peggy Hamburg, who I have only heard great things about; in a brief conversation with her last year, I was struck by her fair-mindedness and belief in the ideals of transparency and greater consumer empowerment. My hope is that she sees the light here. She’s written about how the FDA is a public-health agency, particularly in terms of “risk communication”; well, one of the reasons we communicate risks is to allow people to take responsibility and act in ways to minimize our risks. It’s the basis of preventive health. That’s precisely the potential of personal genomics, and to squash that would have a net effect of undermining the public’s health.

The FDA doesn’t have to use regulation like a hammer to squash innovation and the opportunity for people to use genetics to take control of their health. They can help foster innovation and issue some basic guidelines that recognizes information is a powerful tool, and one that rejects intermediation and paternalism.

I’m crossing my fingers.

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It’s not just CT scans. Caesarean births have become more common, with little benefit to babies and significant burden to mothers. Men who would never have died from prostate cancer have been treated for it and left incontinent or impotent. Cardiac stenting and bypasses, with all their side effects, have become popular partly because people believe they reduce heart attacks. For many patients, the evidence suggests, that’s not true.

Advocates for less intensive medicine have been too timid about all this. They often come across as bean counters, while the try-anything crowd occupies the moral high ground. The reality, though, is that unnecessary care causes a lot of pain and even death.

Being the economics writer, Leonhardt’s focus is on keeping costs down, but there are benefits for individual patients here, too. It’s worth remembering that a lot of this care comes in late-stage disease, when the margin for improving lives is slim – in fact, when late-stage interventions can often be detreminental to life.

We tend to think that throwing more resources at a problem can solve it, but just as that doesn’t work in technology – see the myth of the man-month – so it can be ineffective in healthcare. But actually convincing people that they’re wrong on this point – which we feel in our bones, despite the evidence – will take some work.

UPDATE: A nifty comment on the same article from Health Beat: “…An increased focus on learning to communicate risk and benefit effectively and by ramping up the patient’s role in decision-making will be far more important in reducing health care costs than learning to “say no.””

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But these miracle technologies come with a paradox. In nearly every sector of the economy, technology drives costs down – just as your digital camera gets cheaper and better every year, so technology drives down the cost of manufacturing, the cost of retailing, the cost of research. But for some reason, in healthcare, technology has the opposite effect; it doesn’t cut costs, it raises them. In fact, medical technologies – from CT scans to stents to biologics – are a significant factor in the 10% annual growth rate of healthcare spending, a rate that’s nearly triple the pace of inflation. (Overall, the US is now estimated to spend a stunning $2.7 trillion on healthcare in 2010.)

This was made clear once again last week, when a Massachusetts state audit found that healthcare costs rose 20% from 2006 to 2008, largely because of new imaging technologies. The single largest increase was for digital mammography, a new – and expensive – way to screen for breast cancer.

What’s going on here? Why can’t technology work its magic in healthcare, the way it does in the rest of the economy?

The answer boils down to what’s called “scale” – the notion that technology, thanks to Moore’s law and other exponential improvements, gets progressively cheaper, better and thus more accessible. Cheaper and faster chips, sensors and storage mean that digital technology is constantly scaling up and out, touching the lives of more people. These improvements in cost and power are the democratizing force that has propelled GPS from a military technology to a cellphone feature, and they’re what helps Apple convince us to buy a new iPod every 18 months. Scalability is the secret sauce of the digital revolution.

Except in healthcare. In healthcare, technologies that scale are suspiciously hard to find. There’s no lack of technology, it’s just that they don’t seem to get cheaper and better at the same exponential rate as in the rest of the universe. This is especially strange because CT scans and pacemakers – to take two frequently blamed cost-generators – rely on the same digital technologies that are getting cheaper outside of healthcare.

There are a couple reasons for this. For one thing, there’s far too little price transparency in the medical technology market. Without an open marketplace of prices and services, it’s difficult for hospitals and clinics to know whether there’s a better deal elsewhere, and manufacturers can keep costs high. Secondly and perhaps more significantly, medical technologies still tend to rely on an expert class to actually deploy the technology. GPS may have turned us all into amateur navigators, but CT scans haven’t turned us into hobbyist radiologists. Those highly trained and expensive experts are still needed to actually put the technology to work, making it impossible to entirely automate a process. The result is that technology stays expensive to use, and costs keep going up.

At long last, though, that’s changing, and scalable technologies are coming to healthcare. But there’s a twist: instead of coming from your doctor or hospital, they’re going straight to consumers. Digital monitoring tools like the Nike+ system, which uses a little accelerometer sensor in your running shoe, let people make more informed choices and pursue better health behaviors. And new online decision tools like LifeMath.net, a project of Harvard University’s Laboratory for Quantitative Medicine, take advantage of cheap processing power to crunch data into personalized medical recommendations, making it far more relevant than generic advice (and thus much more likely to result in lasting change, addressing what doctors call “the compliance problem”). These and other tools use technology for what it’s good at. They put the tools directly in our hands, and get us engaged in our health before we need the expertise of specialists.

In the world of insurance and care providers, some folks already understand this, and are way ahead of Washington policy makers in tapping cheap technologies to improve healthcare. In Hawaii, Kaiser Permanente has started a pilot project that churn through its database of patient data to predict which patients might need which tests – and then sends individuals email alerts suggesting they come in for a test or checkup. It’s the same sort of technology that Netflix uses to recommend movies. And the Cleveland Clinic has teamed up with Microsoft to bring self-monitoring tools to patients managing chronic diseases, successfully engaging them in better health behaviors without expensive visits to the hospital.

In the last century, medical technologies ably did their part to extend the life expectancy of the average American to nearly 80 years. It’s time to reassess how we deploy technology in healthcare, and put the digital revolution to work not just for our entertainment, but for our health, too.

The is a cross-post from The Huffington Post.

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Here’s the link: Decision Tree on Kindle

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The Decision Tree debuted to some great acclaim and attention, and I think it’s useful to update some of the highlights here.

Freakonomics blog @ NYTimes.com: A q/a with the Freaknomics blog about decision making, when screening makes sense, and the utility of genetic testing.

Big Money: I Wanna CT Scan Your Hand: An excerpt that discusses how the high price of CT scans adds to healthcare costs.

TheAtlantic.com: The Wonder Drug Myth: Another excerpt, this one about the infrequently discussed miss-rate of drugs.

BoingBoing: An astute read of the book by Bill Guerstelle.

Gizmodo on Sleep Gadgets: A piece I wrote for them about how gadgets like sleep trackers can help us monitor and improve our health.

Also, I’m grateful to power tweets from Tim Ferriss, Dan Pink, Steve Case, Deepak Chopra, and countless others. Hopeful for another big week!

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There are patients – and then there are active patients.

Teri Smieja is one of these heroes. When she learned that she had a genetic risk for breast and ovarian cancer, she embarked on a series of decisions – illustrated beautifully in this excerpt in Wired Magazine – that resulted in her getting two preemptive surgeries.

Todd Small is another. A 40-something Seattle father who happens to have multiple sclerosis, Todd first came to my attention when I reported a story about Patientslikeme.com for the New York Times Magazine. At the time, Todd was actively engaged in his medication – he learned from his fellow PatientsLikeMe community members that his dosage for a drug called baclofen was probably too low, and adjusted it accordingly (working with his doctor, I hasten to add).

When I checked back in with Todd recently while reporting the book, I was surprised to hear that he was about to embark on an even more radical decision: he had heard about an experimental stem cell treatment for MS, and was about to give it a whirl. Todd, who admits he’s no whiz at science, couldn’t make out what the research was saying. So he turned to the PatientsLikeMe community. “If somebody could decode this into simple layman’s terms, it would be much appreciated,” he posted in an online forum.

Soon enough, his fellow members did decode the research – and the consensus seemed to indicate that the procedure, though somewhat risky, was a reasonable bet. It was nothing to sniff at: the treatment begins by extracting 400 milliliters—a little more than a can of soda—of bone marrow from the leg. For several weeks, those cells are used to grow more cells, after which the patient returns and about 50 million cells are injected into the spinal column.  The cells seem to repair some of the damaged myelin in the central nervous system, lessening the symptoms of MS. About 60 patients had been treated with the procedure, and 55 had reported major improvements in their symptoms, including a former Canadian golf pro who was able to return to the game.

To Todd, the idea “was a no-brainer,” he told me later. “I just gotta go for it. If I don’t do this, I’ll be kicking myself. And in another year, I’ll have to quit my job at the shop. I have a family. I have two kids. I owe it to them to at least try this.”

Such self-guided research unnerves the medical establishment. That way, they warn, quickly leads to quack cures and dangerous treatments. That’s no doubt true in many arenas. But the power of PatientsLikeMe is that its members take their science seriously. They demand published research, not anecdotes. They’re quick to debunk phony cures and quackery. They consider themselves not just beneficiaries of research, but participants in an ongoing research project.

PatientsLikeMe co-founder Jamie Heywood calls this “personalized research.” On a smartly run, well-organized Web site, patients can play a huge role in informing each other; they can decentralize and distribute information that once was available only through a personal physician. This means that people can share not only their stories but also best practices and results. The crowd can create its own research, becoming what Jamie describes as “an insight engine.”

The same spirit propels CureTogether, a Web site that lets people with dozens of conditions, from allergies to vulvar vestibulitis, track their treatments and symptoms. Like PatientsLikeMe, CureTogether has an insatiable appetite for tracking patient data, and a faith in collaborative insight. “It’s driven by the patients, not by scientists.” Carmichael calls the insights that result from the nearly 7,000 members at CureTogether “collective wisdom.”

PatientsLikeMe and CureTogether can be seen as a direct challenge to physicians’ omniscience: The companies not only let members track their disease progression, they tacitly encourages them to try to turn those progression curves in a positive direction. This is what’s unnerving to many doctors. But it’s also what makes the self-guided approach so compelling. When it’s done with data, when it’s done as a feedback loop, it can actually result in good, more informed decisions.

Not all of these approaches are right for everyone. Constant self-tracking of the sort that PatientsLikeMe requires—updating one’s symptoms and dosages and progress—can be tedious, especially for somebody who already has a chronic illness. And not everyone is the “early adopter” type. But the truth is, you don’t have to be an early adopter to understand the virtues of mindfulness. At their best, Web sites like PatientsLikeMe and CureTogether offer a true middle path—one that has a grounding in science, yes, but also an understanding that we ordinary folk tend to look to each other, rather than textbooks or research papers, for advice on how to lead and improve our lives. The stories we share about our lives, especially stories about our health, can be incredibly powerful.

The key is to combine our affinity for stories and narrative with our capacity for rational decision making. It’s in the combination where there’s relevance, and where there’s relevance, there’s an occasion for action.

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Quick snip of my latest post on Huffington Post, which is generating a terrific response today.

Every day, we make dozens of decisions without thinking about them: what to feed the kids, how fast to drive to work, whether to hit the snooze bar. We make most of these decisions without a second thought. We go with our gut.

For other decisions, though, we have to pause, consider our options, and bring our best judgment to bear. This can be uneasy territory — and it can get especially fraught with decisions about our health, when we often lack a strategy for weighing all the information on the table. We’re not sure where to start.

But making smart decisions about our health doesn’t have to provoke anxiety. It turns out we’re well equipped to consider a range of options and make the right call. We just need to keep a few principles in mind.

Read the rest here.

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Kent Bottles wrote a piece titled “Check Lists and Decision Trees” that mulled whether structures like a decision tree can help people negotiate the huge information dumps that come with data-driven medicine. Besides the flattering proximity to Atul Gawande’s book, Bottles was generous in grasping the fact that I’m not claiming a decision-tree paradigm depends solely on rational decision making (which is inevitably unrealistic) but that I’m trying to find a way to bring our rational capacity together with our emotional needs – and therein lies better healthcare.

Brian Ahier wrote a terrific post on O’Reilly Radar, largely about the book. Riffing off one of my set phrases – it’s data, not drugs – Brian – who’s not only a health IT expert and blogger but also a member of his city council – nailed the promise and riddle of turning to a data-intensive model for healthcare. As he puts it, “Putting the patient at the center of healthcare and creating a strategy to process all of health data available today is a great start towards meaningful healthcare reform.” I was especially glad that Brian recognized the flexibility of my three principles for patient-centric health: Early is better than late; Let data do the work; and Openness is a powerful thing.

And Susannah Fox of the Pew Center lobbed a characteristically provocative take recently on e-patients.net. Her take: that the book could be retitled What to Expect When Your Expecting a Long Life. (Fine with me; those What to Expect books are huge!). In addition to the flattering notion that the Decision Tree compelled Susannah – a longtime health expert – to rethink her own health decisions, she astutely recognizes that I’m not just calling for self-tracking gadgets and gizmos – I’m really arguing that we should use whatever tools we have, including messaging from the FDA and other official bodies – to make health information clearer and more personalized.

It’s very heartening to me that three people who constitute experts in the field all seem to think the book is in tune with their own knowledge – that the notes are right, and that the composition is in the right key. My hope, of course, is that the book will also find a larger, less-expert audience, but my hunch is that unless I convince the experts, the lay audience won’t be there. If these three are any indication, I’m on the right track.

Lastly, I want to address some Twitter kibbitzing that these ideas are simplistic, naive, or somehow dangerous. I take some assurance that so far, this chatter comes from people who haven’t read the book – because the book itself goes to great lengths to explore both the promise as well as the perils and challenges of engaging in patient-centric healthcare (challenging both for the patient and the system). There is ample evidence presented in the book; the bibliography alone runs to 15 pages. Of course, I’ll answer this head-on when I have the chance. But broadly, I’ll offer this:

There is hope in the book, yes; there is a simplicity to the idea, indeed – but naive or simplistic it is not.

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I was ably aided by my friend David Knowles, a gifted writer and musician who contributed the soundtrack. My thanks to him. Frequent readers of this blog will no doubt be familiar with the ideas, but my hope is that the video may have some potential to engage a broader audience (so link to the video – it’s on Youtube here – and help spread the word!). As the video makes clear, we indeed face in a health crisis in the US (not just a healthcare crisis), and making people aware of the problem and the potential for them to work towards the solution is essential to moving the needle back towards better public health.

Also should say that MP3 podcasts of the Introduction and Chapter 1 are up and available. Enjoy!

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