Health by the Numbers
An exhibition at Boston’s Museum of Science tries to find meaning in the sea of personal data that characterizes our age.
The Hall of Human Life
Museum of Science
Throughout recorded history, scholars have preached the value of self-examination. But whereas ancient thinkers, such as Chinese philosopher and poet Lao-tzu, extolled self-knowledge as a route to spiritual growth, today we seek much more tangible results.
Manufacturers are combining wearable sensors, wireless technology, and specialized apps to create personal monitoring systems that let consumers quantify their health. Users can monitor their heart rate, blood pressure, body-mass index, and other variables. They can graph their calorie consumption and sleeping patterns and track patterns over time—and, presumably, use that data to make their lifestyles healthier. Wired has dubbed the use of technology to measure one’s own health “the quantified self.”
Booming worldwide sales of fitness trackers ($238 million in 2013) reflect basic human impulses: we like to learn what we’re capable of, improve ourselves, and perhaps brag about our achievements. But Americans are highly ambivalent about personal health information: they enjoy collecting their own data but have deep concerns about whether to share that information and how it might be used.
To explore those tensions, I visited The Hall of Human Life at the Museum of Science in Boston, a 10,000-square-foot permanent exhibition that opened in late 2013. The exhibition invites visitors to journey inside the human body and learn how it is affected by both internal factors—for example, each person’s individual DNA—and external influences, such as pollution and infectious diseases. The central theme is that humans are always changing, and doing so on many time scales: we grow and develop as individuals during our own lifetime, while the human race evolves over generations. And the exhibition explicitly urges guests to “engage with their own biology” by measuring and sharing personal information—under carefully bounded conditions.
At a series of “link stations” scattered through The Hall of Human Life, visitors can enter personal data and see how their data compare with those of hundreds of other recent subjects. On entering the hall visitors are offered plastic wristbands with bar codes, which they scan to log in at each station and share their information anonymously.
Each link station considers a specific question that connects to nearby exhibits. In a section that focuses on social environments, visitors can construct a map of their own social networks by tallying how many family members, friends, coworkers, and other contacts they have communicated with in the past two weeks, either face-to-face or by phone, e-mail, or other media. Then the station displays graphs comparing the subject’s social network with those of 200 other recent participants.I had 34 people in my network; for comparison recent visitors’ networks ranged from zero to about 60 people. These numbers seemed low (what about Facebook?), but according to the exhibit, people more commonly connect face-to-face with others in their social networks than via social media, phone, or e-mail.
The display brought the focus back to human biology by noting that people with larger amygdalas (the section of the brain that manages social connections) often have larger and more complex social networks. It also pointed out that social-media channels are changing the ways in which people develop and maintain their social networks, and asked visitors to consider how social media might be changing human brains.
Observers have dubbed the idea of sharing personal information for broader social benefit ‘data altruism.’
Other stations measure conditions ranging from allergies to eating habits to foot size. The stations are designed to show interactions between humans and five “environments” (a use of the term that I found confusing): physical forces, such as temperature, gravity, and light; social communities; organisms living around us, such as bacteria; foods; and time. Moving through them and providing personal data at each kiosk (Do you have allergies? Do your parents have them? Did you grow up with these factors known to confer resistance to allergies in your house?), the underlying theme was clear: although we may not perceive it, we are shaped by factors in the world around us, and our bodies are constantly responding to those influences.
In its first seven months of operation The Hall of Human Life distributed more than 400,000 wristbands. “People love learning about themselves,” says Elizabeth Kong, the exhibition manager. “Some visitors spend the whole day there, or keep their bracelets and come back on another day so they can finish all of the link stations. They see that everyone is different and that variability makes us human. They also see that there can be wide variations in what’s considered normal.” Visitors who keep their wristbands can log into the exhibition from home and receive a customized summary of their data.
In another section of the exhibition, the “Living Laboratory,” visitors are invited to participate in real experiments run by scientists from local universities and research centers. In one recent experiment a researcher from Boston University’s dental school collected saliva samples from volunteers and cultured them to assess whether people with gluten intolerance (determined through interviews) had different types of bacteria in their mouths than others who did not have trouble digesting gluten. Earlier studies in the “Living Laboratory” addressed topics ranging from math and language cognition to the relationship between the shape of a person’s foot and his or her walking gait.
The sections of The Hall of Human Life that invite visitor participation were carefully designed to protect privacy and make people feel comfortable about sharing personal information. None of the link stations ask for any type of medical data that would be protected as personal health information by law.
“The moment people feel that they are being tracked, they react very negatively,” says Kong. The museum’s internal review board and legal counsel reviewed all elements of the exhibition, and researchers who solicit volunteers in the “Living Laboratory” are required to obtain clearance for human-subject research from their home institutions.
Without such visible safeguards many Americans have strong reservations about sharing their personal medical information. This is not an abstract fear: the 2009 economic stimulus act and the Affordable Care Act both contain provisions that require doctors and health plans to start converting from paper records to electronic records that can be shared securely; the aim is to cut costs and reduce clerical errors.
And consumers do worry about who can access their medical records. In a 2007 Harris poll 50% of respondents agreed with this statement: “Patients have lost all control today over how their medical records are obtained and used by organizations outside the direct patient health care [sic] such as life insurers, employers and government health agencies.” Even those who use Facebook, LinkedIn, and Twitter—where many users routinely share (and sometimes over-share) personal information—express similar concerns. Surveys show that many adult social-media users in the United States worry that the health data they share with doctors, researchers, or drug companies could be used in ways that would harm them, for example, by denying them health-care benefits or employment. And they have reason to be concerned about whether their information will be protected. A study published in Science in 2013 showed that it was possible to identify people who had donated DNA samples to genomic studies by cross-tabulating the genetic data with other publicly available demographic information, including genealogy databases.
Nonetheless, the vast majority of respondents say they would be willing to share their data (with identifying information removed) to help doctors improve care. Observers have dubbed the idea of sharing personal information for broader social benefit “data altruism.” Thousands of people with medical conditions already practice it on such websites as PatientsLikeMe, where they share information about their medical histories and treatment with other patients, health-care providers, and companies that make drugs and medical equipment. These sites seek to help doctors understand their patients’ conditions and accelerate the development of new treatments. They also can show what doesn’t work. For example, in 2011 the research team at PatientsLikeMe published a study in Nature Biotechnology based on data submitted by 596 members with amyotrophic lateral sclerosis (ALS, commonly known as Lou Gehrig’s disease), showing that lithium did not slow the progression of ALS. The study refuted work published by an Italian team three years earlier that had suggested lithium could have beneficial effects.
Taken together, the Internet, social networks, and mobile technologies are reshaping many aspects of health care. If society can find ways to promote more sharing of personal health information while addressing privacy concerns, more consumers could decide to be data altruists. From visiting The Hall of Human Life, I learned some new things about how my own body works and the insights that can be gained from group data. The Museum of Science has created a valuable experience for visitors by giving them the opportunity to pool and view personal information in a setting that respects their privacy but also shows the value of sharing.