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.   Read more…

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One morning, a little over a year ago, I woke up with a very sore, and slightly swollen elbow. I remembered that I had cut my arm on a neighborhood bar table while watching a football game with some friends a few days prior, and I wondered if the cut was infected. I made an appointment with my primary care physician, who quickly diagnosed me with bursitis, an inflammation of the fluid-filled sac that pads the elbow. Since I had broken skin, the doctor wisely prescribed clindamycin, an antibiotic, to treat any tissue infection that may have seeped in.

As the hours crept by, the pain in my elbow worsened, until I woke up in the middle of the night with extreme arm pain. I immediately checked the elbow that had been swollen the previous day. The swelling had doubled in size, and the skin was an angry-red color. The following morning, I was back in the clinic, and my doctor started to suspect that this was no ordinary infection on my elbow, and may in fact be a drug-resistant staph infection. Gulp. Nonetheless, he felt confident that the clindamycin should clear it up.

Read more…

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A smart post by The Sunlight Foundation’s Nancy Watzman has me thinking about what it really means to have access to all of our personal health data. In the past, I’ve myopically viewed personal health data as anything that my body produced, in one way or another, and now sits in my shadowy file at the doctor’s office. Things like X-rays, MRIs, and blood test results. No doubt, I should have access to all of this information.

What about prescription medication? Sure, I can easily make a list of the meds I’m currently taking, or get my doctor to hand this list over if memory fails me. But how much do I really know about these drugs? Most people, myself included, take our doctor’s word when he or she decides to put us on a commonly prescribed medications. For example, let’s say a patient has blood-work that shows elevated LDL cholesterol on two consecutive screenings, comes from a family where cardiovascular disease runs rampant, and was previously unable to regulate cholesterol levels with strict diet and exercise regimes. If the doctor prescribed Lipitor to treat the problem, a patient may not even think twice about taking it. After all, we see commercials for such drugs on our TV, and we flip past their ads in our magazines. Direct-to-consumer marketing by pharmaceutical companies makes drugs familiar and, presumably, safe.

But regardless of what advertisements say, the FDA is ultimately responsible for giving drugs the safety stamp of approval. The decision to approve a drug is based on substantial amounts of preclinical (testing in animals) and clinical (testing in humans) data submitted to the FDA by the drug manufacturer.

Let’s say someone – a doctor, a patient, a concerned citizen – wants to review the data that the FDA uses to approve a drug. If the drug you’re taking was approved after 1998, you can find the FDA’s review documents online. If you’re prescribed an older medicine, you may strike out when trying to find what the FDA has to say about it. The government’s information on drugs approved through 1997 may be released if someone makes a request through the Freedom of Information Act, but the FDA reserves the right to not publish reports if the agency deems the preserved documents are of “poor quality”. In fact, Watzman found that online safety information is missing for 9 of the 25 most commonly prescribed drugs.

For older and newer drugs alike, when the FDA publishes a review online, it’s never in a text-searchable format. Rather, the agency prints the original paperwork, edits with white-out to cover “propriety information”, scans the newly edited document, and finally, posts the altered PDFs online.

Are these edited documents, with words covered with white-out and entire sections omitted, really providing us with useful information? Somewhere along the drug approval process, there has to be a succinct memo that circulates around the FDA headquarters describing the agency’s major findings on a particular drug. Why can’t the FDA publish a simple summary of their findings?

Skeptics may argue that detailed information about a drug already published by pharmaceutical companies in medical journals, such as the New England Journal of Medicine (NEJM) or the Journal of the American Medical Association (JAMA), should suffice. However, there are two problems with the information reported in medical journals. First, most of these journals are not open access, meaning the average consumer cannot access them without paying for the article. Second, many drug companies only publish positive findings, and bury negative results that show less than desirable efficacy or safety.

Watzman’s report is an eye-opening look at what’s wrong with the flow of drug information as it goes from pharmaceutical company to the FDA to the consumer. If pharmaceutical companies are allowed to market directly to consumers, we should demand the right to know what the FDA has to say about the safety of these drugs.

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A few months ago, a story ran in Wired Magazine that described a noticeable shift in the scientific method, and attributed the change to our ability to produce and store large amounts of data.
Historically, the scientific method was built around a testable theory.  But in the 21st century, theories were becoming obsolete; the data simply spoke for itself.

Data from our bodies is no exception — physiologic data can now be accessed as a real-time data stream thanks to personal health monitors. But does the vast amount of data we get from our bodies make us any healthier? Do we need to collect data 24-hours a day in order to learn something interesting about our health? Is it even feasible to wear these sensors all day, every day?

I am embarking on a new self-tracking experiment to answer these questions (and possibly a few others). For 30 days, I will be using devices such as the Zeo personal sleep coach, the Philips DirectLife activity monitor, the Mio Motiva wristband on-demand heart rate monitor, and the Nike+ sportband. The goal of this study is not to pit one device against another; rather, I want to focus on what the data tells me, and how I can best use it to stay healthy.

I’ll get a blog post up here at least once a week, all the while working on a longer story about the journey that will be released at the end of the month.

Stay tuned. It should be a fun ride…

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Self-tracking is an effective way to change behaviors. That’s the result of a study conducted last year by the Kaiser Permanente Center for Health Research.

“The more food records people kept, the more weight they lost,” says Jack Hollis PhD, a researcher at KPCHR and lead author of the study published in the August issue of the American Journal of Preventive Medicine. “Those who kept daily food records lost twice as much weight as those who kept no records. It seems that the simple act of writing down what you eat encourages people to consume fewer calories.

“Every day I hear patients say they can’t lose weight. This study shows that most people can lose weight if they have the right tools and support,” says Keith Bachman, MD, a Kaiser Permanente internist and weight management specialist. “Keeping a food diary doesn’t have to be a formal thing. Just the act of scribbling down what you eat on a Post-It note, sending yourself e-mails tallying each meal, or sending yourself a text message will suffice. It’s the process of reflecting on what we eat that helps us become aware of our habits, and hopefully change our behavior.”

The study concluded what proponents of self-tracking have known all along, namely, that monitoring your own actions creates a heightened self-awareness. Sure, fancy new iPhone apps where you track your weight or blood-sugar over time are cool, but self-tracking doesn’t have to go hand-in-hand with technology.

Case in point, on my last visit to my mother’s place, I found a home blood pressure monitor and a piece of paper with scribbled numbers on it sitting on a table in the living room. She told me that she has been tracking her blood pressure every day for the past months, and writing the numbers in her notebook log. I had been tracking my running data for years using elaborate web programs, and complicated sensors. But suddenly I realized that self-tracking doesn’t have to be limited to the tech savvy or early adopters; a pen and a piece of paper will do the trick.

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A few weeks ago, I posted a summary of a few gadgets that tracked personal metrics (steps taken, sleep quality, etc.).  I highlighted these particular devices because they took some of the hassle out of self-tracking by automating the process of collecting data and storing it in a personal database on the device’s website.

Following up on that post, I read an article at Technology Review today that talked about personal data monitors that interface directly with Microsoft’s electronic medical record system, Health Vault.  Now, when you step on a scale or take your blood pressure (with compatible devices), your personal metrics will not only streamline to a single site, but will also associate with your health record, which will make this information easier to share and discuss with your physician.

The article says that interfacing personal health metrics with electroinc medical records is a step in the right direction, but it stil requires the user to physically “do” something (i.e. step on a scale, or take a blood pressure measurement).  However, soon it may become easier for us to monitor our personal metrics, as a quote from the story says that in the future, “…Band-Aid-like sensors on the skin might monitor blood pressure or heart rate continuously”.

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C.P. Snow

The NewScientist recently blogged about C.P. Snow’s idea of “two cultures”: those trained in the sciences and those trained in the humanities.  In this 1959 lecture, Snow proposed that a communications chasm between these groups hindered the effort to solve the world’s problems with new technology.  He concluded that the two groups essentially spoke different languages that made it impossible to identify common goals.  Snow’s lecture captured the proverbial differences in “left vs. right brains”, and showed us that scientists need to be better at communication while non-scientists need to be more conversant in basic technical and scientific concepts.

Fifty years later, Snow’s original idea that these “two cultures” are not communicating still holds true. In my work at various medical technology companies, I’ve often heard engineers and scientists complain that the business folks don’t grasp the technical ideas.  Similarly, those on the business side get frustrated with the engineer’s or scientist’s obsession with small inconsequential details, rather than stepping back and looking at the big picture.

How does this issue relate to The Decision Tree?  In previous posts, we’ve talked about the necessary behavioral changes that individuals must make in order to put the concepts of The Decision Tree into practice — and I realize that’s asking for a lot.  From collecting and analyzing your body metrics to increasing your medical/scientific knowledge, implementing your decision tree will no doubt be demanding.  At the same time, both physicians and scientists should translate their work into insights that resonate with the general public.  In a previous post, we talked about MedEncentive’s interest in improving doctor-patient communication.  Similarly, a better scientist-patient relationship will enable better health decision-making. This way the scientific professionals  and general public could find a middle ground to address the rift described by Snow, thus bridging “the two cultures”. More after the jump. Read more…

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I started thinking about the usefulness of personal health monitors last year. Heart disease runs rampant through my family, and several of my maternal uncles have had heart attacks, one of them at the age of 35.  With my 30th birthday rapidly approaching, I started to think about my own mortality — my blood pressure and cholesterol were both already well above average.  Given my family’s history of heart disease, I decided to go talk to my general physician.  We decided the best course of action was to treat the problem with diet and exercise modifications.  Although I have been physically active my entire life, I realized that I no longer had the metabolism of a teenager, and had to start thinking about what I was eating and how I was exercising before there was a serious impact on my health.

And so, I began running again for the first time in a very long while.  I knew that as I ran more and more, I would start to just feel “better”, but that notion just wouldn’t satisfy the science geek inside me, and I needed to put numbers to my improvements.  So I started tracking my heart rate (via a standard chest-strap heart rate monitor ). I figured, at the very least, tracking my heart rate (HR) during my run would allow me to understand how it correlated to my exertion level.  It would also be interesting to see how my HR changed as I got back into shape. I bought the basic version — the one that shows your current heart rate, but doesn’t store any of the data or calculate statistics like max/min/average HR.  I was surprised how consistent my HR was during exercise, and soon began to use this information to gauge the intensity of my runs.  For example, some days I would be feeling fine and I would be running at my normal pace, but my HR was running about 3-4% higher than usual.  While I’m not sure if that is abnormal, it happens very infrequently, and I used it as a signal that I should slow down and take it easy.  While my current understanding of my HR during exercise is far from the interpretation of body metrics talked about here at The Decision Tree, I believe my analysis has me headed in the right direction.

After a year of using the HR monitor, I feel I am ready for an upgrade.  I want the data collection to be automated.  There is a new class of personal health monitors that is intended to not only be used during exercise, but rather, can be worn throughout the day.  These devices passively collect data, and require no input from the user.  So as you carry on your daily life — walking to meetings, running to catch the bus or train, moving your friend’s sofa up 3 flights of stairs — these monitors are automatically calculating metrics such as the total calories burned, steps taken, and miles traveled.  Combined with online calorie trackers, these devices create a one-stop diet and exercise analysis system.  I just wanted to briefly outline 3 devices that are either on the market, or will be this year.  I have chosen these products for their flexibility (you can wear them with any clothing, and can even collect information while you sleep).

GoWearFit is an armband which has sensors to measure skin temperature and moisture, as well as body acceleration. The company’s software uses the data collected from all of the sensors to determine metrics such as calories burned, physical activity duration, steps taken, sleep duration, and sleep efficiency. Periodically, the user must take off the armband and plug it into their computer to upload their data to the GoWearFit website. There is an online subscription required to view your data on your personal activity manager site.  So the consumer must pay an upfront cost for the armband (~$150+), and then pay the monthly cost for viewing their data (~$7-13, depending on the service contract).

In pre-release sale now,  FitBit is a small device that clips on an waist band, shirt, or a wrist strap (provided by the company).  It tracks calories burned, steps taken, miles covered, and sleep quality.  When the user walks within 20-50ft of the provided basestation, the data is wirelessly transferred, so there is no need to take the device off and connect it to a computer.  The basestation then transfers the data to a personal online database.  Unlike the GoWearFit system, with FitBit the user pays $99 for the device and that’s it — no monthly subscription fee to view the data.  Screen-shots of the online health manager are available on the company’s website, and include some nice features, such as a “see what your friends are up to” social networking tool, which could provide some motivation to go to the gym after those long days, when you are struggling to find the reason you started exercising in the first place.

SportBrain has similar features to the FitBit, such as tracking calories, miles, steps, and even has an online personal community where the user can track the activity of family and friends.  One nice addition is that it also integrates with certain heart rate monitors.  It appears the device is not wireless, so it must be taken off and connected to your computer to upload the data.

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A brief tangent: I’m at the TED conference this week, and today I put on my editor hat and moderated a panel on how to change our global energy priorities, by moving away from oil/gas towards renewables. On the panel were two luminaries – Richard Sears, a VP at Shell and visiting scientist at MIT, and Dan Reicher, head of energy initiatives at Google.org (Dan was a member of the Obama transition team and on the shortlist, reportedly, to be Obama’s secretary of energy).

The lunch went well – among others, Bill Gates was in the audience – and it seemed a lively discussion about what can actually be done, right now, to incentivize both the oil industry as well as consumers to start the shift to other energies.

The consumer angle is especially intriguing, given the focus of The Decision Tree, since one of the items most often mentioned as a driver towards better consumer behavior – in terms of moving towards conservation and making smarter more efficient energy choices – is metrics. Reicher mentioned that the Obama stimulus package, as originally written, has something like $4 billion earmarked to go towards buying (or help buying) some 40 million smart meters for households. That’s enough to change one in three households towards smarter energy usage. Smart meters are basically feedback devices that let consumers know how much energy they’re using and at what times, allowing them to adjust their consumption habits to consume less (and spend less).

This is, readers will recognize, the same sort of thing that’s emerging as significant for changing our health behaviors – giving people a way to see and measure, quantitatively, what they’re doing – and then to calibrate adjustments. Even better: Provide for openness, and let people compare and collaborate on improving their behaviors.

A couple cool examples in the energy world are Fuelly, a website with a social networking component that let’s you track how much you drive your car, what sort of mileage you’re getting, and so on. This is the province of so-called hypermilers, but also folks who just want to drive less and spend less on gas – which was pretty much all of us over the summer. Another cool tool here is WattzOn (pronounced “watson”), a site developed by Saul Griffith that lets you track your overall energy consumption, from airplane travel to food production to consumer goods like clothing. OK, this borders on obsessive, and isn’t entirely practical – but it does give a remarkable picture of our overall energy footprint – not just our carbon footprint – and might provide ways we could cut back (Griffith, for instance, rations the amount of airplane trips he’ll go on each year).

So the parallels here are quite neat – in both circumstances (health and energy), new tools are emerging that suddenly turn our invisible lives into stark, bold numbers, numbers that we can give us insight into exactly where we stand, as well as direction for where we might want to go. In both cases, it’s not going to be easy to actually stick to our principles and change how we do things. It’s no easier to stop driving than it is to stop eating (or in the case of In ‘n’ Out burger, doing both at once). But gaining perspective on the relationship between our actions and our greater context – be it our health or our planet’s health – is a necessary first step.

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One thing I’ve learned covering technology over the years is to be wary of cool hardware. I’ve seen amazing devices and toys and gadgets and gizmos and scarce few of them ever catch-on. Which is to say, if it’s hard to make a good gadget, it’s even harder to make it succeed as something people actually want to buy and learn how to use and integrate into their lives. And when something does work – when something is good enough to get people to change the way they live and adjust their routine and introduce new habits – then there’s something about that product that deserves study.

This is a lesson I tried to keep in mind the other day when I met some folks from Proteus Biomedical, a Silicon Valley company that’s come up with a nifty system for self-monitoring via a data-gathering patch – aka a smart band aid – and smart pills. Called the Raisin system, Proteus’s approach is right in line with the stuff I’ve been researching for The Decision Tree, and the company’s CEO and scientists are fully versed in the promise and challenges of personalized medicine. The Raisin system comes down to hardware, so it’s far from a sure thing – but it’s innovative and intriguing enough to merit some consideration.

The Raisin system has two parts. First there’s the patch, a big band-aid thing that you slap on your chest. It collects physiologic data like heart rate, temperature, respiration rate and so forth (Since it’s not invasive it doesn’t collect chemical information like blood glucose or such). That information is sent, via Bluetooth, to your cell phone, where it is routed online. Voila, constant tracking and aggregation. The patch alone is cool – it’s not the only smart band-aid out there, and these things have been around for at least a decade. But it seems like a simple enough variation on the theme and sounds well designed. The second part of the Raisin system adds to the gee-whiz factor: it’s a tiny sensor chip that is lodged inside a pill. The sensor can detect when the pill is consumed, and that information is sent to the patch and from there to the Web.

The result is a system that can measure basic biometrics but also can track compliance – whether a patient is taking their medication. It could be used to assess when a patient is at some danger from missing a dose (if their pulse or breathing rate start racing, say) or conversely if there’s an overdosage.

Now this is where I could get a bit skeptical – it’s a hardware tool for compliance that comes with compliance issues all its own. Will people really tolerate a big bandaid on their belly 24/7? Will they remember to use a new one after a shower, or when they go on a trip? These are the sort of issues that may thwart the adoption of the system. But put those issues to the side for the moment. What’s cool about the Proteus Raisin system is that it’s capturing data that otherwise is lost, and then giving that data back to the individual (and their loved ones or doctor), in order to improve their health. It’s a nifty way to take these ideas about the power of data, the stuff I prattle on here about, and turn them into specific tools.

Of course, I’m hardly the first to hear the Proteus spiel. MIT’s Technology Review, Business Week, MedGadget, Wired.com, lots of places have covered the Raisin system. So I’ll offer two points that I find intriguing about it that haven’t been mentioned elsewhere:

1) Yeah, Proteus’ approach may have a compliance issue. But it’s an issue with smaller event space, so to speak, than the larger compliance issue of taking your medication three times every day. And if they can get people to wear the patch, they’re going to learn a lot more than whether they take their meds – They’ll get all sorts of bio-data that’s useful beyond any one drug prescription. So the system seems close to pulling off the difficult task of allowing for the passive collection of data and then enabling active engagement with that data. That is, they’ve turned self-monitoring into a simple, functional tool.

2) The Proteus approach is a relatively open one. The Raisin system is, obviously, proprietary, as is the data-collection hardware (whatever’s in that patch). But the Raisin execs said they don’t want to control control the interface for using that data, or how a patient uses their data – meaning the info collected via the Raisin system can be ported and integrated into other companies’ systems and products. I’m sure there may be restrictions to this, but taking them at their word, this means the folks at Proteus understand that data is only truly useful when it’s free to move – and when it’s our data, we should be able to move it whereever suits us. So if they say that a Google Health or a Patientslikeme.com could integrate the Raisin data into their own interface, along the lines of blogs adding a YouTube file. This is very reassuring, and would address some of what bothers me about the walls at Nike+ or Virgin HealthMiles – the data you stick there stays there, and it’s that much less useful.

So will Proteus’ Raisin system catch on? It’s a real question, because not only does it face the usual issues of a new piece of hardware in the marketplace but it also faces the additional burden of compliance from patients. But it certainly is the sort of thing that could make living by numbers more easy for people to get into. Even more, the effect of something like a Raisin may be greater than just improving how many pills we take. In an environment when some individuals are feeling overwhelmed by the number of pills they need to take in a certain order or at certain times, a feeling that can impede compliance and make us less likely to make the right choices, a Raisin system can actually give people the data that brings with it a sense of control, of management that transcends the daily schedule and manifests as a control over our broader conditions. It’s the sort of thing that make people feel like they’re treating their disease, rather than just holding it off. It’s the sort of thing that lets us start seeing our health as a series of decisions that we’re in charge of. And that’s something that deserves to catch on.

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