Total Recall: How the E-Memory Revolution Will Change Everything (13 page)

Seeing the need, software makers have already taken action. Quicken Health can track the state of all the financial transactions associated with health treatments. This is essential for billing and insurance information for the 88 percent of us who have some chronic health problem as we pass sixty, since every medical encounter generates many pieces of paper that we are likely to have to deal with.

Microsoft HealthVault is a free service that promises to warehouse and safeguard your personal medical information that can ultimately be shared with health providers. Google Health is another such utility. These services allow you to upload and manage your own health and wellness information and to authorize third parties to “blindly” upload data to your record, without being able to access the other information therein. The third party can be a person, such as your doctor, or an organization, like an insurance company, or a private clinic, or even a third-party software application. For example, you can have your weight and blood pressure stored to your HealthVault courtesy of software developed by the American Heart Association.

I think of HealthVault for health much in the same way as Quicken or Money for finances. My financial transactions come in different types, and so do my health records. Just as banks, credit cards, and brokers are combined under one database, records from each physician are aggregated into one database. Thus you become the keeper of all your records.

Someday, collecting all your health e-memories will be a snap; today it is a challenge. When I decided to pull together my medical information in 2001, my health records were strewn across four states. I collected my medical files from general-practitioner internists; heart, eye, and other specialists; dentists; several hospitals and clinics; and the half-dozen insurance companies that have covered me over the years. I ended up with more than a thousand pages.

None of the material was in digital form, even though much of it once lived on a computer. Some came by fax because that was deemed secure while e-mail wasn’t. Some was on large negative film, for example X-rays and MRIs. I scanned all the material into MyLifeBits. It included consultation records, doctor communications, surgical reports, immunization schedules and records, pharmacy orders, optical prescriptions, gum depth measurements, explanations of benefits, lab test results, receipts, electrocardiograms, pacemaker data, and echo stress tests. Several nuclear stress tests measuring heart blood flow on film and VHS tape had been discarded. Thus the only hard data about my heart over a long time period were lost. Luckily, a 1995 angiogram film of my heart’s vessel had been retained and was useful for the surgeon on the second bypass.

I had detailed physician statements about my heart, because my mother saved them, going back to a family physician’s letter observing a murmur when I was eight years old. I was immediately confined to my bed for that summer, followed by a visit to the Mayo Clinic.

In 1956, when I was in my early twenties, a cardiologist at the Massachusetts General Hospital reevaluated my situation. His prognosis: Go live a normal life without competitive sports. All through the sixties and seventies my general practitioner assured me that a cholesterol level of 230 was normal. Maybe so, but “normal” turned out to mean “bad” for me when I had a cardiac arrest on February 27, 1983, in Snowmass, Colorado. My friend Bob Puffer gave me CPR and saved my life. I spent the next ten days in a coma in Grand Junction. On recovery I was flown by helicopter directly to a double-bypass operation in Denver. There was some concern about impact to my brain, so the doctor asked me some post-op questions.

“Who is the president?” he asked.

“It doesn’t matter,” I replied.

My friends chuckled. Everyone knew I was right back to normal.

There’s nothing like a brush with death to motivate you to make changes. My heart attack lit a fire under me to start taking my health much more seriously, which included my record keeping and self-monitoring. It was one of the factors that fueled my interest in starting up MyLifeBits. I’ve been keeping my own records since then.

HEALTH LIFELOGGING

Many machines in hospitals spew out paper, or even worse, no record at all, just ephemeral blips on a screen. A whole day of data collection may be summarized in the record as just “normal” or “elevated.” Even in nominally stable vital-sign data there can be patterns or brief events that could have relevance to treatment or diagnosis. Why aren’t more health-monitoring devices integrated into the information network, with their results saved?

The technology has not been there for us, but it soon will be. Abundant storage means we can afford a complete health lifelog. There is already a trend to collect and keep more data from existing medical equipment. Even more exciting, a whole host of new biosensors are coming on the scene that will expand our knowledge almost beyond imagination.

Biometric sensors are moving from the clinic to your home—or wherever you are. Diabetics measure their own blood-glucose at home from a pinprick of blood. Asthmatics breathe into palm-sized devices that measure their airflow. Finger clips can measure pulse, blood and tissue oxygen, blood sugar, the proportion of red blood cells (hematocrit), and tissue acidity (pH.)

People with sleep apnea can now be monitored, at home, in their own beds, with a variety of devices. Apnea, or brief cessation of breathing during sleep, leads to heart disease and other chronic problems. A clinical sleep apnea test involves spending the night in the clinic, covered in wires, constantly watched over by staff via cameras above the bed. In contrast, in-home methods are being developed that use finger (or toe) clips and sensing wristwatches, with microphones and infrared cameras tracking movement but protecting privacy by not recording actual sound or images.

If you belong to a gym, you’ve probably seen fitness equipment that tells you your heart rate and how many calories you’ve burned. Get ready for many more fitness sensors. Nike and Apple have partnered to develop sensors in the soles of shoes that transmit to your iPod. During your run, the iPod displays your pace, distance, time, and calories burned. After the run, the workout information can be uploaded to a workout e-memories Web site. Some gyms also have cardio equipment such as treadmills or stair steppers that can send data to the iPod to record workout data.

I bought a BodyBugg, which you wear on an arm strap against your bicep. It measures temperature, heat flux, galvanic skin response, and acceleration. Heat flux indicates how many calories I am burning. Galvanic skin resistance measures tiny fluctuations in my sweating; it’s one of the main physiological signals used in polygraph “lie detector” tests, and indicates psychophysiological parameters such as stress, anxiety, arousal, and surprise. From this data, I get a report that includes my calories burned due to activity, calories burned during rest, physical activity levels (in METs) and durations, sleep duration, and sleep efficiency.

I’m also intrigued by experimenting with smartphones that come equipped with accelerometers and GPS units. GPS and wireless signals from cell phone towers and Wi-Fi hubs can track my location and movement, which is a highly relevant component of health data. Location data can tell me how much “bonus” exercise I net in my daily comings and goings and it can show me how close I’m coming to my recommended “ten thousand steps per day” plan.

People with congestive heart failure need to track their weight gain, which may signal an increase of fluid retention due to poor circulation. They are prescribed diuretics to shed the fluid. But if their weight gain is due to increased muscle mass, from working out at the gym as the doctor ordered, diuretics are the last thing they need. Thus, scales have been developed with a handle that passes an imperceptibly mild electric current from hand to foot. Changes in electric conductivity indicate the nature of the weight gain—fluid or muscle—so patients can discern whether their weight gain is harmful or beneficial.

Another way to get health data from me is to build sensors into my clothing. Researchers at Dublin City University, Ireland, are working on fabrics that can be made into shirts that track your breathing, or in your shoes to track your steps. They also have a treated fabric that, together with a small LED light and sensor, can be used to detect the PH level of your sweat—an indicator of dehydration. Their fabrics may also be used to detect your posture (another way to track posture is with cameras, such as Alexandro Jaimes and Jianyi Liu used to warn the user in front of a PC when an unhealthy posture has been held for too long).

In the future, the most amazing sensors will be implanted inside your body. Those of us with chronic ailments like diabetes or heart conditions are likely to have implanted sensors that wirelessly transmit their knowledge to another device outside the body, such as a cell phone or personal digital assistant. These sensors will not only stream our vital-sign readings to our personal health record but will continuously monitor them for troublesome or telltale patterns. Depending on the severity or risk, they will e-mail us alerts to follow up with our doctors as soon as possible, or immediately connect us to our doctor’s office, or even autodial 911 and send for an ambulance. Cardiac devices such as my pacemaker are already being equipped for wireless communication. They pass on values undetectable outside the body, including electrical activity, intraventricular pressures, blood flow, and ejection fractions.

All of your biosensors will communicate to have their data become part of your lifelog. Manufactures like Philips already sell a line of such devices for the home that wirelessly transmit to a hub that then can forward information to a health provider. I recently bought a Bluetooth-enabled bathroom scale that automatically sends my weight to my e-memory (in this case, HealthVault) where I can chart my weight-loss progress, or lack thereof, over time.

In addition to sensors, the reduced cost and increased convenience of some lab work will expand our health lifelog. For example, comprehensive blood sampling is becoming cheap and possible to do without large volumes of blood, enabling biomarker testing that can help identify the onset of many conditions, including cancer, cardiovascular risk, and autoimmune diseases.

In November 2008 I accepted an invitation, as a Microsoft employee, to participate in a landmark digital health research study called the Scripps Genomic Health Initiative. They asked me to send a DNA sample—via spit in a bottle—to San Diego for gene sequencing. The study is aimed at understanding if people will be motivated to make positive lifestyle changes such as exercising, eating healthy, and quitting smoking after receiving their personal genomics test report.

I believe more testing will become routine, and we will log all the details of each test, not just their summary results.

You don’t have to be a multiple heart-attack victim to see how much life quality, and even years of extra life, will be salvaged by recording how well your body is functioning. Then again, even multiple heart attacks can’t get me over my loathing for dealing with batteries. The hassle factor of changing batteries all the time is just too much. Here’s a word to the wise for all the miniature-device makers out there, whether it’s cell phones or cameras or medical devices that you wear. At minimum, a standard USB cable should both charge and upload data at the same time. And, yes, I said standard—enough of your special thirty-dollar cables and cradles. The ultimate solution is that I should just be able to toss my devices on a universal charging table that recharges them wirelessly through induction, while they upload their data wirelessly to a browser-accessible place in the cloud in a format a middle-school student could read.

My loathing of batteries keeps me from using my BodyBugg most of the time. But really, I should know from experience not to skip any biomonitoring. I used to wear a Polar strap around my chest when I bicycled so I could get just the right amount of exercise. Regrettably, I didn’t wear it during a biking trip in the hilly region around the French Riviera in April 1996. I was not fully recovered from the flu, but didn’t realize that would matter. After a day of biking and a lovely dinner, I awoke with a severe pain that I attributed to “heartburn.” In fact, it was a heart attack that needed immediate attention. I had overexerted myself. By not wearing the Polar strap, I’d left myself in the dark. The consequence—a blowout of part of my 1983 double bypass—was revealed in a stress test several months later.

We are only beginning to imagine what can be tracked with implanted sensors. Combined with wearable sensors, in-home sensors, and ever cheaper, more accessible laboratory tests, a whole new universe of quantitative health is dawning.

GETTING HEALTHIER

This chapter opened with a story about my doctor relying on his memory to gauge my improvement. But doctors aren’t the only ones with imperfect memories and filtered perception. Patients don’t hear half of what they are told by their physicians, even when especially important information is discussed. I believe it would be very useful to record these sessions with our physicians to aid our memories in these times of stress.

Just remembering to take your pills is a problem. People usually don’t forget painkillers, because pain is a potent motivator, and its own reminder. But overall, patients only take about half the medications prescribed to them. Have you ever taken your medications until you start to feel better, then quit taking them days or weeks before completing their course? Have you ever left your doctor’s office all revved and psyched up to eat a healthier diet, start exercising, or floss daily only to find the new habit lasts but a week?

The good news is that quantitative health can be a shot in the arm for motivating you to take care of yourself.

You are more likely to take your medications if you can see a chart that confirms the value of the medicine. What if you had a chart on your personal Web page showing your cholesterol going down week by week? What if you got quarterly imaging scans of your arteries so you could watch as plaque dissolves from improvements in your diet and exercise regime? What if you could observe your heart and lungs in a series of images, or your vital statistics trending up or down on a chart? Quantitative health data is already being used to motivate patients, and the practice will only expand.