Note: this blog post originally appeared in my public Google Plus feed as an experiment. You can find that posting here.
A few weeks ago, Dave deBrokart's TED talk was posted online. The title of the talk is "Meet e-Patient Dave." e-Patient Dave, as he's known online, is probably a familiar name to many readers. e-Patient Dave has been telling his story, supporting others and encouraging changes to healthcare IT for a while now. In his talk, e-Patient Dave breaks into a rap, "give me my damn data," he beats out. The question of ownership of health data is not a new quandary. Savvy patients and patient advocates have been asking for - and often gaining - access to their health records for years. Those of us who are either data geeks, e-Patients or some mix of the two have been anxiously awaiting, even advocating for, health data exchanges, portals into provider-owned electronic medical records (EMR) and integration with our existing technological fancies. Meanwhile, a whole new category of devices and services are emerging around personal health data. Devices like the Fitbit tracker and Withings Wifi Bodyscale generate a flow of health-related data. Services such as Microsoft Health Vault and, at least until its impending closure, Google Health give individuals a way to aggregate their own health data. There are even opportunities to capture lifestyle data from social sites. The question of who owns the data may ultimately be solved not through access to provider-hosted EMRs but rather through personal ownership. Tools and services are emerging which may shift the balance of health data power towards patients. Can you envision a future where you have all of your health data and the provider's services feed into your collection, rather than the other way around?
I won't masquerade as a health IT expert, far from it in fact. (here is one to follow if you are interested.) The virtues of EMR are widely discussed and available from many sources. As a brief overview, the incentives for and attention on EMR adoption by healthcare providers have gained significant traction in the last few years. Health IT vendors stepped up their game. Products are more robust and capable than they were even five years ago. The physician population is also changing, becoming more IT enabled. Some speculate the population will come to expect EMR in their practice as new doctors graduate from programs and residencies where EMR is the norm. The government has also created incentives for providers. The Meaningful Use guidelines and financial rewards associated with EMR implementation are worth upwards of $44,000 for providers who participate with Medicare. Conversely, there are reimbursement penalties for providers who do not meet meaningful use by 2014.
The implementation of an EMR is not trivial. The array of offerings is vast in terms of capabilities, complexity and cost. Implementations may take up to a year. Even after go-live, providers tell me there is another six to 12 months before they regain their pre-EMR productivity. In short, these things aren't that easy.
On the other hand, EMRs offer virtually unmeasurable benefits. Medicines and allergies are stored and flagged for interactions. Doctors can collaborate on care by sharing records, results and treatment plans. Patients, in some cases, can get access to visit history, lab results and secured communications with providers. In examples, these are life saving benefits. Clearly, the adoption, despite its challenges, is worth the effort.
Now, cut to the consumer world, the place where most of non-healthcare workers live. If you aren't an e-Patient, health data geek or, like most healthy Americans, a frequent consumer of health services, you probably don't much care about electronic medical records. Its ok, we don't hold that against you. Here is what you are up to though. You tweet about your workout. You post pictures of meals you eat on Facebook. You check into the gym on foursquare. You track your runs with your iPhone's GPS. Some of you even wear pedometers or fancier electronic fitness devices. Some of you are even e-Patients, sharing medical history, treatments and outcomes on social sites. You are, knowingly or unknowingly, generating a plethora of health and lifestyle data. There are devices and services gaining prominence which offer even more ways to generate and capture all that juicy data.
Recently, I've become reacquainted with my Fitbit tracker. Note: electronic gadgets typically don't survive a wash cycle. Let's not discuss it further. With my new, unlaundered Fitbit, I get a real time readout on steps taken, distance traveled, calories burned and an indicator of overall activity level. Every time I so much as walk past my computer, the Fitbit magically, ok, wirelessly uploads its findings about my activity to the Fitbit website. It even tracks my sleep patterns if I wear it at night. When I log on to the site, I also have the opportunity to enter foods I've eaten. The result is a new twist on an old idea - calories in and calories out. I can see instantly if I am burning more than i am taking in. I also have a set of indicators putting my sedentary office worker lifestyle right in my face. If I haven't hit my activity goal by the end of the day, the site lets me know.
Friends of Fitbit, Withings have two complementary products. Their Wifi Bodyscale is, just as it sounds, a scale with wireless networking built in. Step on the scale, cover your eyes, gain courage and by the time you open your eyes, your weight, along with body mass, and percent lean vs fat have been transmitted to Withings' site. When you log into the site, you can see changes over time, track goals, etc. You can even allow Withings to tweet or post your weight to Facebook. There's an idea for shared accountability for the brave. Withings recently introduced an iOS (iPhone and iPad) powered blood pressure cuff. Wrap the cuff around your arm, plug in your phone and launch their app. In seconds, your systolic and diastolic readings are logged into the app and Withing's site. By the way, least this unpaid ad err on the side of omission, the folks at Withings teamed up with Fitbit to let you share data between their sites. Pretty cool, huh?
Runners have been telling me about RunKeeper for the iPhone for a while. I'm not a runner. i mean, I don't want to be, although I've reluctantly joined the sweaty, pavement pounding, sore feet club. RunKeeper, and apps like it - including the Nike + system - track distance, time, effort, and frequency of runs. You can use these apps to share your run information with others. I've found the RubiTrack desktop app along with the free Motion X GPS iPhone app also do a nice job capturing run data.
So here we are. Data data and not a drop to drink. How do we begin to take all of this lifestyle and personal health data and corral it into something useful? Don't look to the provider-based EMRs any time soon. While many offer patient portals and even smartphone apps, they do not, today, have conduits for pulling data from these new devices; they are particularly absent any ability to scrape social lifestyle data for meaningful information. There are two main contenders in the personal health record (PHR) space: Google Health and Microsoft Health Vault. Sadly, at least for this user, Google has announced the impending shutdown of its Health service. Fitbit and the Withings products will feed data into both services. Some healthcare providers have also built exchanges with Google Health and Health Vault, notably Beth Israel Deaconess Medical Center in Boston.
Let me not misrepresent this - we are a long way from a good PHR and data interchange. Yet the writing is on the wall, our devices are getting smarter. We carry mini, though powerful, always connected computers in our pockets. There are gizmos and apps to track our activity. We post health and lifestyle data on social networks. Pretty soon, we may know more about ourselves, through our health and lifestyle data, than our providers know in their EMRs. What then, will they be forced to ask us for our damn data? I hope so.
By the way, check out e-Patient Dave's great talk, via the TED link above or the embed below: