Meet the Feedback Loop

About a year ago, right after The Decision Tree book came out, I realized that a concept I touched on in the book had far larger potential. The Feedback Loop, it struck me, had potential as a framework for improving human behavior throughout our lives. Indeed, feedback loops could be put into action beyond health, into areas such as productivity, energy consumption, and other categories where human behavior plays a pivotal role.

So it only took me 15 months, then, to tap out the article that is now the cover story in the new issue of WIRED: The Feedback Loop: How To Get Better At Anything.

This is a classic tech/trend piece, but one that I'm especially proud of, because I think it represents some thinking that goes way beyond my meager brain. It is, as much as anything I've ever written, very much in the zeitgeist in Silicon Valley. The idea is simple: Tracking our behavior can help us improve it. (This is the essence of the Quantified Self meetups that my pals Gary Wolf and Kevin Kelly have curated). But the opportunity today is profound: New sensors can help us track our behavior more readily than ever before - and, moreover, that tracking can extend beyond the Silicon Valley crowd to the population at large. Feedback loops can be incorporated into all sorts of experiences and tools, and can be readily understood by all sorts of people. Thus, all of a sudden, a rather geeky idea starts to get rather universal. And that means SCALE, and that's where it starts to get interesting.

One thing I was sorry about in the Wired story was that I couldn't give full voice to the vast historical and contemporary context of feedback loops, exploring their roots in 18th century engineering and 20th century military strategy and contemporary philosophy and behavioral science. There is a HUGE amount to talk about in terms of feedback loops - where they come from, what they draw on, what they help us with today, and what they might enable tomorrow.

In other words, there's a lot more to say here. It's almost like there's another book in it....

A Prescription for Doctors

Enough about patients: What is a doctor to do? In the past few months, since The Decision Tree book came out, I've had the privilege to talk with many doctors about the opportunity and challenge of engaging patients in their own health. Some physicians, not surprisingly, have been suspicious, and even hostile to the idea that patients have a role to play. But thankfully, those have been rare exceptions. Most doctors I've spent time with have been eager to hear about new tools that might engage their patients, and they've been eager to share well-earned advice on where there's work to be done. It has been a delight and an education to talk about the potential of healthcare with these physicians who are, after all, doing the hard work of providing medical care every day.

A high point in my continuing education came a couple weeks ago, when I was invited to speak at the Minneapolis Heart Institute Foundation's Fall Nursing Conference, where I met a number of nurses who are eager to help patients gain some control over their health. A few days later I gave a lecture on patient engagement at the University of Minnesota Medical Center. The invitation came from Dr. David Rothenberger, an esteemed surgeon who has consistently emphasized the importance of innovative thinking in medicine. Dr. Rothenberger also runs a program for physicians with promising leadership potential, and part of my day involved talking with them about the changing nature of clinical medicine, and the challenge of engaging patients in their healthcare.

These were good doctors, deeply motivated to help their patients, and there was scant resistance to the notion of an empowered patient who might seek to engage in their care and treatment. Indeed, they seemed to relish the opportunity to work with such patients.

But as they shared their experience in the clinic, it was clear that empowered patients in the model of ePatient Dave are the exception. Most of us aren't so savvy, nor so motivated, to roll up our sleeves and drive our care decisions.  Most patients don't ask to see their records; most patients don't take their drugs as prescribed; most patients don't research their treatment options (though most seem to use the Internet); indeed many patients don't actually do what their doctors advise at all. Most of us don't follow the basics of good health: get exercise, eat properly, avoid stress. Just judging by the national obesity rate, too many of us squander our chances to improve our health, and the result is what medicine unfortunately calls "non-compliance" - the failure to follow doctors orders. These good doctors of Minnesota see non-compliance every day in their offices and they are frustrated and baffled by it. As we spoke, it became clear that they were searching for some way to get through to those patients who don't do what they surely know they should.

In part, this frustration was fueled by the increasingly use of pay for performance measures where doctors are scored and evaluated by their patient outcomes. Though I am in favor of pay-for-performance as a strategy for reducing costs and emphasizing health over illness, it's evident that there's lots of work to do getting the metrics right. Too often, it seems, physicians are scored by absolute measures without taking into account their patient demographics or the delta between where a patient entered their care. This blunt measure incentivizes doctors to selectively churn through patients, dropping the unhealthy ones who don't follow orders (or never accepting them as patients in the first place), and it has the opposite of its intended effect.

More than anything, the conversations underscored what I'd known but hadn't frankly given much thought to: how difficult and vexing it can be to care for patients. Doctors have a hard job, and I am personally deeply awed by their tenacity and perseverance. As one physician noted, "90 percent of my job is education, and I have no training for that. What I learned in medical school only counts for a fraction of what I'm actually doing every day." Talking to patients, encouraging patients, getting them on board with the task of improving their health is all about cajoling, persuasion, and lots and lots of education. And that's a daunting thing.

Every doctor, no doubt, has their own quiver of techniques to address this. Places like Sermo help flush some of these strategies out. But it would be disingenuous of me to advocate for patient engagement so vociferously if I didn't consider the other side of the equation: How physicians might successfully engage their patients. So drawing on the insights of Dr. Rothenberger and his ace stable of practitioners, and inspiration gleaned from the cardiology nurses of Minnesota, I've put together a humble five-point prescription for doctors and other care-providers: Five things they should seek to give every patient, strategies to tap the most underutilized resource in medicine, their patient.

1) Transparency: The all-knowing-physician is a myth that no longer serves patient nor doctor. It sets up false expectations for patients, who often come away from the doctor's office without the definitive diagnosis or treatment, and it holds the physician to an impossible standard of perfection. Better that everyone lay their cards on the table. Physicians might share what they know about a patient's condition or course of treatment –  and also make clear what they don't know. When mulling a course of treatment, let the patient know what the range of choices is, and then explain why the recommended course seems to make the most sense. The presumption that patients can't handle ambiguity, that they can't parse probabilities, is entirely wrong. Life is ambiguous, it is uncertain, and we all inherently understand that. Outside of medicine, we experience it every day. Making the ambiguities evident, shining a light on the dark, so to speak, lets patients reckon with their health just as they do with other parts of life.

2) Repetition: For doctors and nurses, the hospital or clinic is their office. They're used to it. It's routine. For patients it's anything but. White coat syndrome extends way beyond higher-than-usual blood pressure. Every comment from a doctor or nurse is charged, every word choice studied for inflection. But that doesn't mean we're actually grasping what the doctor is saying. Even if our needs are minor, for patients the doctor's office is charged with anxiety and fear. That look on our face? It means you've lost us.

And then, when we're out the door, anything we did understand is gone. I know this personally:  I have listened deeply to a suggestion that I take an over-the-counter medication, and then, by the time I get to Walgreens, blanked on the dosage and frequency my doctor suggested. Anything that's not written down - i.e., everything except a prescription - is going to be lost. If your patient doesn't bring a pen and paper, write your advice down for them.

3) Resources: It's no surprise that I think patients should get full and immediate access to their records, notes, and lab tests. Even if the patient can't make heads or tails of it, it's an important gesture of reciprocity, partnership and, I would argue, ownership. This stuff is ours. But there are other resources that a doctor can help their patients with. I'm not talking brochures and pamphlets - I'm talking about the Internet (again). In part this is simply pragmatic. Patients are going to go there in search of more information and answers, and they might as well start where their doctor suggests they do. And there's no reason this shouldn't augment the doctor's care; they're already overworked and pressed for time. Use the outside world, identifying informative websites and online support groups.

And about the Internet: Physicians should flush out this elephant in the room. You know your patient is already on there, doing all sorts of research. What they find may not be relevant, but it's filled their heads with ideas. Even if they don't come in with papers and print outs, they've already got preconceived notions about what's wrong and what they might do. Get it on the table. Ask patients what they've read online about their condition (this is quid-pro-quo transparency). Listen. And then, if necessary, explain why it doesn't pertain. Even the most misguided patient has taken a worthy first step towards engagement - they care about their health. Start there and use it.

4) Patience: Just because patients don't do what you tell them to, that doesn't make them irrational. They may have what, to them, seem like perfectly reasonable reasons to ignore their doctor's advice. Understanding these reasons, flushing them out, can be a way to pursue other, more promising approaches. Conversely, just because patients may not do what they should doesn't mean they've given up, that they've decided to live in ill health. Failure is a part of life, and it certainly is a part of our health (witness the eight or so times it takes a smoker to successfully quit). But humans are resilient creatures, we are persistent, and helping patients understand that they can make their way towards better health with a few missteps comes as a great relief. Take it from a Catholic: Going to the doctor's office is very much like going to the confession booth, and in both places the confessor is probably embarrassed to tell the full story. Diffusing that anxiety, forgiving the missteps, can be a great motivator.

5) Goals: A great impediment to sustained and better health is the fact that we don't think about it that much. Most doctor's visits, after all, are about a problem (it bugs me to no end that the intake form at many doctor's offices, including mine, presumes poor health with the first question: "What is your Chief Complaint?"). Even if that's why we walked in the door, that shouldn't be how we walk out. Rather than send patients out with a to-do list, physicians might send them out on a path, with milestones and purpose. Fact is, we do better when we have an objective, when we feel that we're making progress towards something - that's human nature. A great way to create engagement about health is to create a sense of purpose, that the drudgery of tasks required - new drugs and new diets - isn't just managing our health, but is in fact building towards something.

So that's my prescriptions for doctors. No doubt putting these into action would require, first and foremost, time - perhaps the most precious resource a physician has. But my hope would be that they could be worked into the habits and dialogue that already take place, and that they might make that communication smoother, less fraught, and more productive. I would be eager to hear if there are other strategies out there.

Why The Debate Over Personal Genomics Is a False One

I appeared on KQED's Forum show this morning to discuss this whole Walgreen's/Pathway Genomics fallout. Here's a link to the show: 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.

Screening HPV at Home

In Chapter 6 of The Decision Tree, "Screening for Everything", Thomas talks about the human papilloma virus (HPV), the virus that causes cervical cancer. Traditionally, doctors detected HPV by looking for irregular cells in the pap smear. But now, a cheap ($5) test can detect and analyze the DNA of the virus, determining if it is the high- or low-risk type, which can determine the likelihood of a patient developing cervical cancer. One problem remains: you still have to get women into the clinic to be tested. However, a new study in the British Medical Journal shows that home testing is not only a reality, but it may actually boost compliance rates. Roughly 28% of women using the home testing kit, which consisted of a simple cervicovaginal lavage, effectively screened themselves, while only about 17% of women required to go into the doctor's office for screening showed up.

The HPV DNA test is primarily looking for the high-risk virus serotype, and the authors of this study claim that home screening kits have the same sensitivity as the doctor's protocol when specifically looking for the aggressive virus.

Special thanks to Lindsay Crouse for bringing this to my attention. In her email to me, she brilliantly summed up the significance of home HPV testing:

While screening has been tremendously successful in Western countries at reducing cervical cancer cases and deaths, the obstacle of reaching all women through screening remains. Currently, if a woman is to be screened for cervical cancer, she must visit a health care provider for a gynecological exam. If she is unable or reluctant to do that, whether due to transportation, cost, or comfort issues, she is less likely to get screened at all, and is consequently at increased risk for developing cervical cancer. More than half of such cancers are typically diagnosed in women who do not get screened regularly.

Kindle edition, now available!

Great news - The Decision Tree is now available in a Kindle e-reader edition at Amazon.com! Here's the link: Decision Tree on Kindle

The Book Hits the Store

Whew, what a week. 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!

Can High Blood Glucose Levels Cause Cancer?

Diets high in simple sugars and refined carbs cause metabolic disorders and Type II diabetes in millions of Americans. But to make matters worse, new evidence suggests that high sugar diets may be even more dangerous than we initially thought. Having too much excess sugar in the bloodstream is never a good thing, and can lead to medical complications such as kidney failure, cardiovascular disease, and eye problems. But could high blood sugar also cause cancer? A Swedish research team addressed this question by tracking over 500,000 patients for 10-25 yeas, and published their results in the December issue of PLoS Medicine.

Similar to the findings of a study conducted in Korea in 2005, the European research team discovered that having elevated blood glucose levels increased the risk of developing certain types cancer later in life, such as pancreatic tumors in women and liver tumors in men. Not only had more cases of cancer occurred when people had high blood sugar, but the chance of survival also plummeted, especially when the person had cervical, espohageal, or colorectal cancers.

The authors present two theories on why elevated blood glucose levels could cause cancer: 1.) high sugar diets may cause an overproduction of insulin or insulin-like growth factor 1 (IGF-1), both of which promote rapid growth of new cells, the catalyzing step to tumor formation. 2.) More glucose in the blood stream could simply be adding fuel to the fire, feeding rogue tumor cells that need lots of energy to run.

Because the studies lacked certain controls, we can't say for sure whether elevated blood glucose levels cause certain tumors to form. For example, the people with high blood glucose levels may have been sedentary, and so the lack of exercise may be what's actually increasing the chances of developing cancer. Regardless, this study gives yet another example of unhealthy lifestyles contributing to comorbidity, a topic discussed at length by Thomas in The Decision Tree book.

T-Minus 1 Day: A Progress Report

In these days before the book comes out - tomorrow! - there have been some wonderful write-ups about the book. Just thought I should note them here. 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.

The Quantified Pregnancy

An insightful post by Susannah Fox of the Pew Internet Project called "What's the Point of Health 2.0" was stuck in my mind all week.  For the people already living their lives as "e-patients", the concepts we talk about here at The Decision Tree simply make sense.  They'll say, "Of course I should track some aspect of my personal health".  Or, "Why wouldn't I engage with other people on the internet who have a similar medical condition as me?"  But what about the rest of the people out there?  How can I best convince them of the power of the Health 2.0 movement? In her post, Susannah said that Esther Dyson helps her understand that even though the Health 2.0 crowd is relatively small right now, these e-patients provide a glimpse of how powerful and interactive health care can become in the future.

For similar reasons, expecting moms give me hope for the future of Health 2.0.  They constantly read up on the latest baby health information.  They post comments on blogs, forums, and social networks, sharing insider tips and trends.  

Last week, I attended the quasi-monthly San Francisco Quantified Self meetup.  We had yet another spectacular night of presentations by people who are tracking some aspect of their life, whether it's health data, fitness trends, or a complex analysis of how they spend every minute of the day.  The meetup was hosted by MedHelp, a company that's created a large medical social community.  I was particularly struck by their presentation on their suite of personal health trackers, which included a 'Pregnancy Symptom Tracker'.

With MedHelp's online application, women can easily track the symptoms they're experiencing, such as morning sickness, fainting incidents, and mood swings.  But in true Web 2.0 fashion, the true power of the application is realized when users share their data with others.  By pooling the data of many users, MedHelp is defining, in near real-time, the norms of pregnancy. For example, their results show that morning sickness peaks around week 8, but falls off rather quickly later in the pregnancy.  Fainting spells are far more common right before birth than at any other time.  Alas, there's no relief from mood swings.  They occur in 40% of women, and are fairly constant while pregnant.

I hope that in the future, data like this will arm people with the information to decide if a certain symptom is normal, or whether it's time to see a doctor.  After all, making decisions based on data will not only help people save dollars at the doctor's office, but will also lead to better health.

Why Calculators Are the Future of Medicine

[this is a post I did for TheHealthcareBlog, crossposted here]

Want to know the future of medicine and healthcare in one sentence?

For my money, it goes like this: The real opportunity in healthcare is to combine our personal data with the huge amount of general biomedical and public health research, in order to create customized information that's specific to our person and our circumstance. We need relevance, and the right information at the right time will help us make better choices for prevention, helping us stay healthier longer, it'll help us navigate diagnosis, letting us select screening tests that are useful and not unnecessarily fearful, and it'll let us make better decisions on care and treatment - when we're trying to choose among various treatments to find our way back to health.

It's in the last category - care and treatment - that I wrote a recent post at the Huffington Post about one man's story with prostate cancer. Tom Neville got a diagnosis and then had to struggle to find information to help him make sense of what to do. Ultimately, he chose surgery, but the difficulty of the choice led him to create Soar Biodynamics, a company that offers decision-making support for men assessing their prostate health.

You can read his story here and learn more about his tool here, but for the purposes of this post I wanted to consider the kind of decision-making tool he created. It's called a nomogram, and it's one of my favorite discoveries in researching The Decision Tree.

A nomogram is basically a calculator - a way to assess our risk or outcome for a particular condition. A nomogram starts with an interface where a few telling datapoints can be entered, and then turns to an algorithm that crunch those numbers together with broader data about the condition. The result is a statistical prediction - the prediction can concern the outcome of the disease, or it can be a recommendation for particular treatment (a medical nomogram is not to be confused with mathematical nomograms, which are tools for calculating geometrical something or others).

The Framingham Risk Calculator, which calculates your risk of heart disease, is a kind of nomogram. Memorial Sloan-Kettering Cancer Center, the research institute and hospital in New York City, has developed almost a dozen nomograms for a range of cancer conditions. There are tools for predicting the spread of breast cancer, a tool for assessing lung cancer risk among smokers, a tool for predicting the prognosis after colon cancer surgery, and more. Dr. Pierre Karakiewicz at the University of Ottawa has developed nomogram.org, which offers prediction calculators on four different types of cancer. Nomograms are one of the best examples of Decision Tree thinking, the sorts of tools that are easy for patients and doctors alike to use and understand—particularly when they’re available online and free of charge. They're brilliant and auspicious because the turn research around so that it faces the patient: An individual can interrogate medical science for how it applies to his specific circumstances, rather than having to navigate through stacks of research papers and findings for some wisp of relevance.

Nomograms are especially powerful when they’re combined with a screening test, because they help people understand what to make of the test and point to what to do with the result. They immediately customize the clinical data, be they nanograms-per-milliliter figures or spots on mammograms. Nomograms let patients ignore the inscrutable repository of jargon that is medical research in favor of something personal, something real, and something to go on. They allow us to make sense of a screening test’s result, and allow us to take some measure of meaning from it.

The University of Texas at San Antonio, for instance, has developed a prostate risk calculator that lets a man enter his PSA level along with his age, race, family history, and a couple of other metrics and churns out his risk of developing prostate cancer. Importantly, the calculator also calculates the risk of a high-grade cancer, accounting for the fact that not all prostate cancers are lethal. The value of such a tool, says Ian M. Thompson, professor and chairman of the department of urology at the University of Texas Health Science Center at San Antonio, who developed the calculator, is that it turns the PSA figure from one isolated data point into one of many inputs. “We need to build in characteristics about the person, their age, their race, their family history,” says Dr. Thompson. “It’s not just what one test tells us.”

Nomograms, of course, are no substitute for a doctor's definitive assessment and treatment (or better yet, more than one doctor). And they are only as good as the data that goes into them; if they're not kept up to date on the latest information and research, they can lead people astray. But especially for conditions where we have some agency - where we can take actions today that can enhance our tomorrow - they are a terrific tool.

The catch with nomograms is that they must be developed one disease at a time, which means they don't scale up so well. Each one takes a great deal of work and expertise. But if I had millions of dollars for philanthropy, I'd spread it around to smart researchers across a lot of fields where nomograms could help people assess their risk for disease and potentially take actions today. It would be money well spent.

Calculator image via Flickr by Ian Ruotsala