The Quantified Self and the Future of Health Care

The  Quantified Self is a global collaboration of users and tool-makers interested in the personal meaning of personal data. There are now Quantified Self groups in more than twenty cities around the world. Our inspiration is the Homebrew Computer Club. Once upon a time, computers were thought to be useful only for scientists, managers, and planners. But a few people saw things differently: they argued that computers were for  all of us. That notion seemed very strange. What would an ordinary person do with a computer? But it turned out that the personal uses of computers were not just an important use, but the most important use.

We at the Quantified Self think of data the same way. Nearly every day, we hear about a new system to track human behavior. There is sensor-based tracking of sleep,  activity,  location,  heart rate,  blood glucose,  metabolism, even facial expression. There are web services to track mood,  diet,  menstrual cycle,  productivity, and  cognition. (This is just a sample, to give a sense of range, and not an endorsement of any particular approach.) Often, when I talk to my friends in the health care field, they are eager to know how exploring these tools might be justified in conventional health care terms: return on investment, treatment outcomes, patient compliance, etc. This managerial view of data is part of the important conversation that happens every day on the The Health Care Blog. But for the remainder of this post, I’d like to ask you put these questions aside. Seeing something of the big culture change happening outside health care might prove useful for solving some of the seemingly intractable problems inside it.

There are three reasons people track themselves:

They have a specific goal, such as losing weight, keeping fit, sleeping better, ameliorating a chronic condition, or training for an athletic competition.

They are generally curious. Surprisingly often, people find their tracking data valuable even in the absence of narrowly-defined utility. These self-trackers see their data as a kind of mirror on the self, helpful in maintaining overall self-awareness. (Like keeping a diary.)

They want to establish a baseline with which to measure future changes. This often goes along with a belief that the data will become more powerful over time. Personal data, in this sense, is an investment that will pay off in the future, and is part of an exploratory, pioneering worldview.

They want to establish a baseline with which to measure future changes. This often goes along with a belief that the data will become more powerful over time. Personal data, in this sense, is an investment that will pay off in the future, and is part of an exploratory, pioneering worldview.

The first of these reasons is clearly the most common. This is where the millions of pedometer users, calorie counters, and athletes fit in. But in a pattern we’ve seen again and again, a goal-oriented tracking project can shift over time into a curiosity-driven exploration, often pursued for its own sake. As more people turn on to self-tracking, social reinforcement also plays a role. Sometimes data is used as a kind of badge of identity and token of participation, like a tee-shirt, as when people post their running data online.

Sometimes it is used to illustrate a problem, explain a mystery, or appeal for help, as in Robin Barooah’s coffee and productivity investigation.

Sometimes it is used to bond with others and improve motivation, as in this  mood tracking practice using Moodscope.

Sometimes it is a general form of reflection and exploration, as in this remarkable  life logging work by Ben Lipkowitz. While Ben is using a tool of his own invention, the integration of self-tracking, life-logging, and social media is making it easier and easier to build self-tracking diaries semi-automatically. Here, a service called Memolane simply produces a timeline of tweets.

What I hope you’ll notice is how tracking personal data is driven by many things that go far beyond health care; and even beyond ideas of “fitness” or “wellness.” That’s important, because while the health care industry is attempting to solve problems relating to EHRs and PHRs and compliance, people outside health care are building a personal data infrastructure that is far broader, more flexible, and less constrained than the professional medical systems that are taxing the industry’s financial and intellectual resources.

The presence of a robust culture of self-tracking changes nearly everything about health care. For instance, self-trackers are in a position to make important discoveries that challenge standard practices and reveal unexpected connections. (My personal favorite so far: ” Does butter make you smarter?“) The more people do this, the more radically the context of health care changes. Soon, the data collected through personal tracking will dwarf everything that’s been collected in the past. The influence of these changes goes all the way up and down the health care system, from personal decisions about what kinds of conventional treatments to accept to expert review of standards of care.

So while a personal data hero like Hugo Campos is battling to free the data from  implantable cardioverter defibrillators (ICDs), which remains inaccessible to patients from whose bodies it is collected, Quantified Self companies like Basis are producing affordable, small devices that offer wireless real time biometrics, like heart rate, motion, and galvanic skin response. I put these two examples together not because I think a wireless heart monitor is the equivalent of an ICD, any more than Memolane is an EHR. Obviously, one has almost nothing to do with the other. But that almost – that’s the key. These tools are the type of classic “oversimplified” inventions that can disrupt health care fundamentally. Low cost, minimalist tools that are impossible to deploy in a demanding, capital intensive, government-regulated field, nonetheless are the crystals around which entirely new practices emerge. Services associated with something like a real time heart rate monitoring wristwatch will push into research applications, and as data accumulates it will inspire new clinical ideas also.

In the world of the Quantified Self, we already see this happening with companies like  Cure Together and  Patients Like Me, relatively simple web service that allows individuals to track and share their treatments and symptoms. These companies are not in the health care industry – at least as it is conceived today – but they make a new social context for different kind of health care industry that they will help invent.

When the Web first appeared, it was ridiculously weak and under-featured. You couldn’t even customize the layout of a page without absurd kluges. Eventually, though, the Web triumphed and everybody who had a job in the information industry had to learn to play nicely with it. It triumphed because it did something for us, as individuals. It let us participate. Similarly, the ICD makers (used here only as a vivid example – the same goes for EHRs, PHRs, etc. etc.) are going to have to play nicely with people who have grown up in a culture of self-tracking and assume they have a right to data access and integration at all the layers of the personal data ecosystem.

I am a guest on the The Health Care Blog. When I read the posts, I read them with humility, as an outsider, trying to learn what experts in the industry are doing and thinking. I’d like to invite you to make the reverse journey, and look into what’s happening at the Quantified Self. There is probably a meeting near you, and we are holding our first  QS Conference on May 28 and 29 in Mountain View, California. Typically, in our events, we try to find the answer to three questions:

What are you doing?
Why are you doing it?
What did you learn?

Almost every time, we are amazed at what we see and hear.