The Quantified Self Movement: Transforming How We Study Family Caregiving  

 

6:30 AM: Samantha wakes up to the alarm from her phone’s sleep tracker app. Still half asleep, she picks up her phone and glances at the screen — it looks like she got a good night’s sleep last night. Five full REM cycles, and she only woke up once, at 2:21 AM.

As she makes breakfast, she’s careful not to put too much butter on her toast — her daily calorie counter app will adjust by suggesting a smaller allowance of calories for the rest of the day. As she walks out the door, she almost forgets to put on her Fitbit — she can’t let her co-worker beat her to 10,000 steps again today.

Down the street, Tim wakes up and tests his blood glucose level; it’s too high. As a borderline diabetic, he’ll have to lay off the sugar even more today. He eats breakfast and gets ready without looking at his phone a single time; according to his new phone usage app, he’d been spending over two hours a day on social media apps — far too much.

At work, Tim immediately activates his personal productivity tracker app; he’s got to get a lot done today. Each evening, he checks how much C02 he emitted that day; as an avid environmentalist, he wants to minimize his contribution to global warming, which inspired him to start biking to work instead of driving.

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Today, almost anything can be counted, collected and quantified. Weight loss, time management, physical activity, sleep patterns, and environmental impact can be logged, tracked, accumulated and evaluated, all for the sake of one goal: self-improvement.

Atlas envisions a scenario in which caregivers can collect important data about themselves to better see what it is they do. Once there is better understanding of daily activity, people can affect their tasks, experiences, networks, and overall lives.

What is “Quantified Self,” and how is it changing us?

 At its simplest, Quantified Self (QS) is a movement that provides knowledge, tools, and community for to support people in their self-tracking efforts.  Tracking often includes wearable technology that can measure everything from posture, heart rate and calories burned to brain activity, breathing patterns and cortisol levels. It can also be as simple as keeping a handwritten log of what you ate that day. Whether gathering data on a person’s mood, cholesterol levels, steps taken or productivity level, the goal is to increase self-knowledge and, thus, catalyze healthy change.

The concept of examining oneself to gain more insight and use it to improve is not new. Even Benjamin Franklin, in his famous autobiography, sought to track his daily virtues in a pursuit of heightened morality. Franklin said, “I entered upon the execution of this plan for self-examination, and continued it, with occasional intermissions, for some time. I was surprised to find myself so much fuller of faults than I had imagined; but I had the satisfaction of seeing them diminish.”

The QS paradigm and human progress

Today, with the use of wearable sensor technology, it’s difficult to find something that can’t be tracked.

We’ve entered into an era of such personalization that we “know” ourselves, our bodies, our habits and our minds more than ever before.

The Pew Research Center found in 2013 that at least 69 percent of adults in the U.S. track something, whether it’s weight loss/diet/exercise (60 percent), health indicators such as blood pressure, headaches or sleep patterns (33 percent), or a health pattern for a loved one (12 percent). Further, those with chronic conditions themselves (45 percent of the U.S. population) were much more likely to track health symptoms than those without a chronic health issue (19 percent of those without a chronic illness were trackers; 40 percent of those with one chronic issue; and 62 percent of those with two or more issues).

Those with serious health concerns were also more likely to take their tracking more seriously than those without them, taking the time to use more methodical tracking techniques such as medical devices versus just tracking things “in their heads” or on a piece of paper, like many without serious health issues.

While it’s clear that those with chronic ailments take self-tracking quite seriously, what about those who are caring for them?

Can QS technology benefit caregivers?

The key to the knowledge gained from self-quantification is to actually do something with it: change will not come simply from knowing, but rather from making lifestyle adjustments in order to see positive impacts and desired achievements. This is precisely what Atlas founder Rajiv Mehta hopes to achieve for the country’s 40 million-plus family caregivers.

An active member of the QS community since its inception, Rajiv had a question: what if the same technology that allows us to track calories, steps taken or blood pressure could also be used to track the daily realities of caregiving, and thus improve them?

With the goal of utilizing self-tracking technology to make valuable insights into caregiving, Rajiv recruited Gary Wolf, co-founder of the Quantified Self movement, and Dawn Nafus, renowned digital anthropologist and self-tracking expert, to the Atlas advisory board, and a truly first-of-its-kind study was born.

QS and Atlas’ Pilot Study

How can you quantify the daily tasks of a typical family caregiver? To find out, Atlas took a unique approach. By creating a combination of digital and analogue databases, participants were able to paint the most comprehensive, accurate and realistic portrait of their daily caregiving realities. The goal was not just to collect large sums of data, but to honor each individual caregiver’s story and use technology to illuminate it.

Atlas’ pioneering Pilot Study collected the data of 14 family caregivers, ranging in age from 30 to 73, via a combination of high-tech monitors and sensors as well as the traditional ethnographic techniques of hand-written activity logs, verbal interviews, and hand-drawn diagrams of each caregiver’s care networks (now known as the Atlas CareMap). The data was studied to make fascinating insights about caregivers’ habits, routines, challenges and gaps in needed assistance.

“What I like is that Atlas’ approach is a synthesis of analogue and digital,” says Michael Birt, health care expert and Atlas of Caregiving advisory council member. “I’m very suspicious of the entirely digital approach to [tracking caregiving]. Caregiving is a very analogue process. It’s really embedded into our physical lives. But on the other hand, digital helps us scale and reach resources that we never would’ve thought possible. It’s that analogue-digital bridge that I like.”

Sensor technologies included a Narrative Clip (a small wearable camera that took a photo approximately every 30 seconds), an Empatica E4 (a wrist sensor that collected data on movement, heart rate and electrodermal activity), a Netatmo Weather Station (an in-home environmental monitor that collected data on CO2 levels, humidity, noise, and temperature), and SmartThings Motion sensors (placed throughout the home to collect data on movement). In-depth results of the Pilot Study can be viewed here.

These technologies offered groundbreaking insights into the daily lives of family caregivers. But perhaps one of the most effective tools from the Pilot Study are the Atlas CareMaps. With nothing more than a pen and paper, participants were able to see their daily caregiving networks in a completely new and more comprehensive way, promoting better understanding of their own lives as well as offering a visual affirmation of the help potentially needed.

QS and the “Internet of Things”: Enabling a more holistic approach to caregiving

As more and more devices have the capacity to connect to the internet (referred to as the “Internet of Things”, or IoT) and thus transmit data to another connected device, the quantified self movement is only expected to grow. Simply put, IoT describes any device that collects or transmits data through the Internet. Early examples include ATMs and computers, with modern examples including cars, wearable technology, even washing machines and ovens.

As of 2008, there were already more objects connected to the Internet than people. According to the firm Gartner, in 2017, there will be a predicted 8.4 billion connected devices — up 31 percent from 2016, and by 2020, there will be at least 20 billion connected devices, if not more.

This continual growth of device-to-device communication will also allow a more holistic approach to studying family caregiving. The more digital and analog options available, the more accurately and fully Atlas will be able to study and research caregivers — increasing our ability to provide the most realistic, practical and effective resources and tools.

QS technology will continue to be a cornerstone of Atlas’ research and development. On June 17, Rajiv will speak at the annual QS Conference in Amsterdam to share crucial insights on how family caregivers can truly discover themselves through self-tracking. He will discuss how experienced self-trackers can guide family caregivers in learning about their caring activities and its impacts on their family, community, and overall quality of life.