If you are a baseball fan like I am, it is not unusual for you to spend time with your fellow sports fanatics comparing statistics. A player’s batting average, on base percentage, runs batted in, earned run average, home run stats and how those compare to their team mates’ stats–all fair game for friendly conversation. The personal analysis of players’ worth doesn’t stop there, as each of them has their height, weight, age and home town displayed on the screen as they step up to bat. Can you imagine if every time you went to work a big Jumbotron screen with all your vital statistics followed you around for all to see. “Look, there’s Lisa on deck. Man, she really is that short.”
Well, you might be horrified to think that the intimate descriptive details of your being might be published and used to compare your value to others, but there is a growing cadre of people who willingly do exactly that despite the complete impossibility that they will ever be found sliding into home plate. In case you have missed it, there is a burgeoning movement built around “self-knowledge through numbers” generally known as “the Quantified Self.” The term Quantified Self refers to the actions that thousands and thousands of over-achievers, narcissists and the insecure are actively undertaking every day, aided by a giant leap forward in sensor and wireless technology, to measure, track and report their vital statistics in the pursuit of living forever, or at least until the Houston Astros win the 2011 World Series in a sweep. FYI if you’re not a baseball fan–that’s going to happen about 3 weeks after hell freezes over.
Human instrumentation is booming. FitBit can track the number of steps you take a day, how many miles you’ve walked, calories burned, your minutes asleep, and the number of times you woke up during the night. BodyMedia’s armbands are similar, as is the Philips DirectLife device. You can track your running habits with RunKeeper, your weight with a WiFi Withings scale that will Tweet to your friends, your moods on MoodJam or what makes you happy on TrackYourHappiness. Get even more obsessive about your sleep with Zeo, or about your baby’s sleep (or other biological) habits with TrixieTracker. Track your web browsing, your electric use (or here), your spending, your driving, how much you discard or recycle, your movements and location, your pulse, your illness symptoms, what music you listen to, your meditations, your Tweeting patterns. And, of course, publish it all — plus anything else you care to track manually (or on your smartphone) — on Daytum or mycrocosm or me-trics or elsewhere.
In 2007, Jon Cousins started tracking his mood to help NHS psychiatrists decide if he was cyclothymic (a mild form of bipolar disorder). After a few months of tracking, he started sharing his scores with a friend, who expressed concern when his score was low. Jon’s mood sharply improved, apparently because of the sharing. This led him to start Moodscope, a website that makes it easy to track your mood and share the results.
I was curious about the generality of what happened to Jon — how does sharing mood ratings affect other people? In January, Jon kindly posted a short survey about this. More than 100 people replied.
Their answers surprised me. First, in a survey about sharing your mood — not about tracking your mood — most respondents did not share their mood. It is as if, in a survey about being tall, most respondents were not tall. Second, although Jon’s mood sharply rose as soon as he started sharing, this was not the usual experience. Sharing helped, some people said, but other people said sharing hurt. For example, one person said her mood was used against her in arguments. Finally, the respondents gave all sorts of persuasive reasons that rating their mood helped them. To me, at least, the value of mood rating isn’t obvious. I can list a dozen hypothetical benefits but whether they actually happen is unclear to me. I rated my mood for years and did it only to learn about the effects of morning faces. MoodPanda, another mood-rating site, gives a few brief vague unenthusiastic reasons to track your mood. And their site is all about mood rating.
In contrast, Moodscope users were clear and enthusiastic about the value of tracking. Here are some reasons they liked mood-tracking:
It is useful to look back sometimes to help you find ways of ‘keeping up’ a positive mood/outlook.
My mood range has definitely narrowed since starting mood stabilizers, so using Moodscope has given me solid evidence that the treatment is working well. I also run statistical analyses of my mood charts against variables like sleep, medication use, and alcohol consumption. The correlations were not particularly meaningful using a 9-point Likert-like scale from a standard mood chart. When I used my Moodscope scores instead, I suddenly found that some of the correlations are (ridiculously!) statistically significant, which also made me feel more certain about what I need to do and change to better manage my mental health.
I am a big fan of DIY (do-it-yourself) healthcare, at least for the bulk relatively minor issues that plague people. I think the days when doctors were needed to control, interpret and dole out health data and information are waning. There are simply too many ways, primarily via the internet, to get good, reliable, easy-to-understand information about our own health.
The Quantified Self (QS)people who use sensors, mobile apps, and other devices to collect data on themselves may be taking it to what some would consider extreme, but I think it is the wave of the future.
Now, no one would question who “owns” the data collected in this manner, but how about data collected via a medical laboratory? Is that somehow different and something we, the patients, should not be allowed direct access to lest we harm ourselves by misinterpretation. Interesting question!
The issue is explored in a commentary in the December 14, 2011 issue of the Journal of the American Medical Association (JAMA). Traber Davis Giardina, MA, MSW and Hardeep Singh MD, MPH, ask the question: “Should Patients Get Direct Access to their Laboratory Test Results?” They find that it is “An Answer with Many Questions.”
Several years ago both Microsoft and Google invested millions of dollars on a flawed assumption: If they built a useful and free healthcare application, people would flock to it. In both cases, the effort failed. At its peak Microsoft HealthVault was only able to enroll a few thousand—largely inactive—users. Google Health was discontinued after a few years.
The problem was (and is) that unlike almost any other business, healthcare is a negative good.
Even if it’s “free,” as was the case with both the Microsoft and Google offerings, most people find tracking their health to be, in some sense, an admission of frailty, imperfection and mortality. Except for occasional blips related more to vanity (weight loss is the prime example), when it comes to our health most of us are in denial. So when people talk about technology for patient engagement, I tend to pause and wonder: Should we be building apps and services just for patients, or for the people who care about them too?
Much has been made of Mark Cuban’s medical knowledge since he tweeted, “If you can afford to have your blood tested for everything available, do it quarterly so you have a baseline of your own personal health”. Charles Ornstein shared the tweet and many physicians and others, myself included, weighed in on the costs and potential for harm from unnecessary testing.
I’ll admit that, when I tweeted to him, I expected Cuban to agree. But he didn’t. In fact, he grew increasingly resistant. I stopped responding when he announced that the opposition to his idea his had convinced him he needed to take his proselytizing to his TV show.
Instead of poking the sore, I began to wonder about the origins of Cuban’s conviction. I remembered that he is not alone in wanting tests that clinicians who worry about value, cost, and harm think he shouldn’t have.
But where do these attitudes come from? Is it possible that clinicians are contributing in any way to this situation? Quite the contrary: most Americans want tests, even when you tell them that nothing can be done with the information. Furthermore, Americans are more convinced of the benefits of tests like mammograms than people in other countries, and then go out and get more of them.
I think that we are. My team has studied why patients get so many electively placed coronary stents, when cardiologists readily admit that randomized trials have demonstrated that there are few situations in which such stents improve survival or reduce the risk of heart attacks.
Studies of the beliefs of patients who have just received an electively placed stent give a big clue: 80% thought stenting would reduce their risk of death, even though their cardiologists knew that this was not the case.
Businessman and maverick, Mark Cuban recently opined “if you can afford to have your blood tested for everything available, do it quarterly so you have a baseline of your own personal health.” I’m unsure why he said quarterly, not weekly, daily or hourly. ‘
He further opined that this must be done to “create your own personal health profile and history. It will help you and create a base of knowledge for your children, their children, etc.” I assume etc. refers to grandchildren’s children.
I’m unclear what my grandchildren would gain from knowing my serum free testosterone levels in 2014. That’s a lot of data to enter in ancestry.com. For that matter, the size of my grandfather’s spleen in 1956 probably doesn’t affect the way I think about my mortality. That year he had a bout of Leishmaniasis, which, thankfully, isn’t a problem in Philadelphia.
Cuban further explained “a big failing of medicine = we wait till we are sick to have our blood tested and compare the results to “comparable demographics.”
Atul Gawande is the preeminent physician-writer of this generation. His new book, Being Mortal, is a runaway bestseller, as have been his three prior books, Complications, Better, and The Checklist Manifesto.
One of the joys of my recent sabbatical in Boston was the opportunity to spend some time with Atul, getting to see what an inspirational leader and superb mentor he is, along with being a warm and menschy human being. In my continued series of interviews I conducted for The Digital Doctor, my forthcoming book on health IT, here are excerpts from my conversation with Atul Gawande on July 28, 2014 in Boston.
I began by asking him about his innovation incubator, Ariadne Labs, and how he decides which issues to focus on.
Gawande: Yeah, I’m in the innovation space, but in a funny way. Our goal is to create the most basic systems required for people to get marked improvements in the results of care. We’re working in surgery, childbirth, and end-of-life care.
The very first place we’ve gone is to non-technology innovations. Such as, what are the 19 critical things that have to happen when the patient comes in an operating room and goes under anesthesia? When the incision is made? Before the incision is made? Before the patient leaves the room? It’s like that early phase of the aviation world, when it was just a basic set of checklists.
In all of the cases, the most fundamental, most valuable, most critical innovations have nothing to do with technology. They have to do with asking some very simple, very basic questions that we never ask. Asking people who are near the end of life what their goals are. Or making sure that clinicians wash their hands.Continue reading…
Physicians have always been in the information business. We have kept records of patient data regarding the vital signs, allergies, illnesses, injuries, medications, and treatments for the patients we serve. We seek knowledge from other physicians, whether that knowledge comes from the conclusions of experts from research published in a medical journal or the specialist down the hall. However, a physician will always benefit from additional good information such as the analysis of pooled data from our peers treating similar patients or from the patients themselves.
Over the next few years, vast new pools of data regarding the physiologic status, behaviors, environment, and genomes of patients will create amazing new possibilities for both patients and care providers. Data will change our understanding of health and disease and provide a rich new resource to improve clinical care and maximize patient health and well-being.
Patient Data Used by the Patient
Instead of a periodic handful of test results and a smattering of annual measurements in a paper chart, healthdata will increasingly be something that is generated passively, day by day, as a byproduct of living our lives and providing care. Much of the data will be generated, shared, and used outside of the health system. It will belong to patients who will use it to manage their lives and help them select physicians and other healthcare professionals to guide them in their quest for a long and healthy life.
Based on a patient’s preferences and needs, the data will flow to those who can best assist them in maintaining their health. It will reveal important and illuminating patterns that were not previously apparent, and with the right system in place, it will trigger awareness and alerts for patients and other providers that will guide behaviors and decisions.
I wanted to take a minute to address this study, since we participated in it directly. We are excited that we got to work with some very smart people to answer a question we also wanted to know the answer to. We jumped at the opportunity to find out—is having your physician introduce you to the app and help you sign up enough to kickstart a health journey?
What we learned is that just introducing people to MyFitnessPal wasn’t enough. People have to be ready and willing to do the hard work.
The app itself does work—if you use it. Our own data and the data from the study show that the more you log on, the more you use the app, the more success you will see. Users that logged in the most lost the most weight. In fact, we already know that 88% of users who log for 7 days lose weight.
We make tools designed to make it as clear and simple as possible for you to see the path to achieving your fitness goals. We are not, however, making a magic bullet—because there is no magic bullet. Ultimately, you’re the one who has to do the work.
If you’re wearing a wristband that counts your steps, a patch that monitors your vital signs or a watch that tracks your heart rate, you are in the minority. And if you paid $300 or more for any of those items, you are among the nation’s quantified self-health elites.
Judging by the chatter streaming across our social media feeds, one would think every man, woman, child is sporting a health “wearable.” But in reality, these are the early days of the devices that promise to help us live longer, healthier, more active lives.
Despite the buzz, just 21% of Americans own a health wearable, according to a new consumer survey by PwC’s Health Research Institute, and only 10% of them use it daily. Even fewer consumers – 5% of respondents — expressed a willingness to spend at least $300 for a device. Many wearables today are a passing fancy – worn for a few months then tucked away in a drawer awaiting a battery charge or fresh inspiration to get up and get moving again.
As Genentech CEO Ian Clark recently put it, health wearables are “a bit trivial right now.” And it seems even the folks claiming to be wearing the devices can’t be trusted – reports have begun circulating of employees enlisting their more active coworkers to wear the device and collect fitness points on their behalf.
Yet wearables present remarkable opportunities for a nation and industry grappling with the twin challenges of improving health and controlling healthcare spending. Across the board, consumers, clinicians, insurers and employers express high hopes for the power of these new devices.