The HUMAN Project: An Atlas for the Human Experience
July 14, 2017
Would you be willing to help researchers change the world by securely sharing your bloodwork, health information, purchasing habits, and even your social interactions for the next two decades? If you’re one of 10,000 New Yorkers invited to be part of the HUMAN Project, you could have the opportunity to do exactly that.
The HUMAN Project will partner with 10,000 participants to collect an unprecedented array of data in an effort to quantify the entirety of the human condition for the first time. The study's uniquely expansive approach will foster a deeper understanding of the interactions between biology, behavior, and environment—information that can be used to strengthen public health, education, public policy, and more.
The HUMAN Project is a pioneering exercise in big data which could transform the social sciences in the same way the Sloan Digital Sky Survey transformed astronomy. The Sloan Digital Sky Survey—one of the world’s largest astronomical mapping projects—revolutionized society’s understanding of the cosmos through creating a comprehensive field guide to the universe, a kind of ‘celestial census.’
Before Sloan, scientists would book time on a telescope for two to three nights a year and study images in isolation. But the invention of a telescope that would capture more than a third of the sky allowed scientists to download exhaustive data on thousands of astronomical objects at one time. This shift in the way data is collected is helping scientists retrace the history of the universe and guide future discoveries into the universe’s greatest mysteries. This is exactly what the HUMAN Project is trying to replicate, but for the social sciences.
“We will be getting one hundred times more data per person than any study has ever before attempted to get.”
—Paul Glimcher, Director, The HUMAN Project
Project director Paul Glimcher—who is also the Director at NYU's Institute for the Interdisciplinary Study of Decision Making and a professor of Neural Science, Economics and Psychology—says there are currently no databases that combine long-term health, financial, social, criminal justice, and educational data about a representative sample of the population to make links between health and lifestyle (for example). The HUMAN Project resolves this issue by capturing a huge amount of data from all corners of society, allowing researchers to tease out patterns and uncover new ways of understanding how we live.
The HUMAN Project takes some cues from the Framingham Heart Study which tracked thousands of adults’ cardiovascular health in Framingham, Massachusetts beginning in 1948. The study didn’t set out to prove anything in particular, but years of data pointed researchers to the direct link between smoking and emphysema.
Before the study, doctors were still prescribing cigarettes.
“Once the study had enough data, it showed that 85 percent of people who smoked had emphysema. That is a stunningly simple insight, but you needed to have continuous data to see it,” Glimcher says.
“One of the things we often say is that we’re trying to put together the puzzle or work out the roadmap that connects our previous behaviors. We don’t know what we will find.”
“We know that people get diabetes at unprecedented rates, we know people get hypertension at unprecedented rates. We actually don’t know what the major causes of these things are and to know that we need to build a map.”
While it is still unclear exactly what this treasure trove of data will uncover, the project aims to make new discoveries about the causes of Alzheimer’s disease, the impact of city development (such as the Barclays Center and Hudson Yards) on communities, and much more.
And researchers already see the impact they can make at the individual level.
“We know for example that people who have acute depression change their behaviors in very specific ways in the weeks before they end up in the hospital. They get out of their apartments less, they make fewer social contacts, and they seem to engage in less social behavior.”
“We can actually measure that stuff in real time. We could build an app that once we have two years’ worth of data, would say to you or to your healthcare provider ‘there’s a 75 percent chance you’re going to wind up in the hospital. Think about seeing your therapist or upping your antidepressant dose,” Glimcher says.
A study of this scale raises many questions about data security and privacy, but Glimcher says protecting participant data is their number one priority—and they would destroy it before they gave it away. The data will be stored in a secure facility at the NYU Tandon School of Engineering at the Brooklyn campus, complete with thumbprint scans, key cards, and no internet connection.
“We couldn’t be doing more to keep the data secure. Having said that, we do need to analyze the data. We’ll figure out the answers inside our secure facility and work with accredited academics or policymakers to do the analysis—but they wouldn’t be able to look at the data per se,” Glimcher says.
“They would leave with the insights. If we’re trying to figure out whether people get richer or poorer when we do economic development projects, they’ll leave with information about the neighborhoods that got better and worse, the ethnicities that got better and worse, et cetera.”
These findings could have a major impact on decision-making at the local level, but Glimcher says they won’t be pushing any policy positions based on what they discover.
“We’re scientists and our job, as we see it, is to figure out the truth. Our job is to make the data available and widely known and to let citizens decide how to use that data to make a better city.”
“It’s a little bit like the Sloan Digital Sky Survey in that whether you’re an astronomer who studies black holes or star types, the Sloan Digital Sky Survey database is the thing that you use.”
“We want that to be true for people interested in healthcare, social science, and policy. This is the database you need regardless. We think a database like this will be transformative for the city.”
Glimcher hopes to launch similar databases in Chicago, Los Angeles, Miami, and Dallas, essentially creating an atlas for the human experience in America’s largest cities.
And if history has shown us anything, it’s that the efforts to unravel the ties between the seemingly unrelated aspects of our lives could be a major breakthrough for the social sciences, for data-driven policy, and for the world.
Want to learn more about the research tools of the future? The Sentinel Group—NYU’s smartphone-based study—is currently recruiting volunteers to help develop user-friendly and engaging data-collection technologies to study people and our environment. Learn more at thehumanproject.org/sentinelgroup.