The HUMAN Project is an interdisciplinary research platform that serves as a public resource for learning everything possible about the connections between our minds, bodies, and environment to enable the development of new theories, therapeutics, and policy recommendations to solve the toughest societal challenges facing us today. These goals are achieved through a partnership between the Project’s participants, the Project’s staff, and their company: Data Cubed Inc.
What is The HUMAN Project: Human Understanding through Measurement and Analysis
The HUMAN Project is a new research study out of New York University, one of the world’s most influential universities in research that has been committed to enriching New York and its citizens since 1831. The Project is the first to develop a rigorous interdisciplinary research platform, giving scientists a single place to better understand the connections between our biology, behavior, and our environment.
The HUMAN Project (THP) doesn’t want to study just one thing: it wants to create a resource, the platform, which can enable all kinds of studies across many different disciplines and domains all at once, like a research Swiss Army Knife. Unlike previous long-term research studies, it will gather as many different types of data from its 10,000 participants as possible, because things like Alzheimer’s, obesity, and depression, to name just a few, result from the interaction of many different factors of our biology, behavior, and environment—we just don’t know yet which factors and to what degree. (Learn more about the types of data we’ll collect in our FAQs.)
The HUMAN Project is the next big step in multi-decadal, or longitudinal, research studies that have revolutionized medicine and healthcare—like the Framingham Heart Study, which followed the cardiovascular health of thousands of Americans for decades and is the study that found definitive links between smoking and heart disease in the 1960s. That wasn’t one of the original goals of the Framingham study, but that’s what the data pointed to, and that study continues its research to this day.
Our researchers have detailed many kinds of research that can be done with The HUMAN Project’s platform, but it’s hard to predict with certainty all of discoveries that might come out of The HUMAN Project in the years ahead. That’s precisely why THP is needed today: it will give researchers and scientists the means to put together all the pieces of the puzzle that define the human experience and research our most perplexing problems, from Alzheimer’s to the effects of air pollution on our long-term health. The goal is to build a holistic understanding of the factors and influences that shape our lives and affect our health and well-being, leading to new theories, therapeutics, and policies that will improve millions of lives.
The HUMAN Project was initiated by The Kavli Foundation in 2014 to expand what is possible in interdisciplinary research to fully understand all of the factors that affect human health and behavior, and quantify the interactions between biology, behavior, and our environment (the bio-behavioral complex). Partnering with NYU’s Institute for the Study of Decision Making (NYU ISDM), The Kavli Foundation funded a 3-year development cycle for The HUMAN Project. The HUMAN Project is currently operated out of NYU ISDM in New York City.
Where Are We?
The HUMAN Project is wrapping up its development cycle and getting ready to launch its participant recruitment in Fall 2017! In the meantime, The HUMAN Project team has begun field-testing the processes and technologies and that will be used by THP in complementary study called The Sentinel Group. The participants of The Sentinel Group are like beta-testers for the tools, technologies, and methods that will be used in The HUMAN Project, and this study will continuously run alongside The HUMAN Project as we continue to develop and refine the study’s tools.
In the coming months and throughout our enrollment period, The HUMAN Project will continue to hold events for the public, the research community, and policymakers to ensure an open and transparent study design process and continually solicit feedback to improve the study. Check our Events page for upcoming events of interest to you. In the meantime, we are always looking for input from the public, so feel free to send thoughts our way at firstname.lastname@example.org.
Privacy & Cybersecurity Safeguards: A Top Priority
The HUMAN Project takes the privacy of its volunteers and protection of the data collected very seriously. So seriously in fact that we have an advisory council dedicated to overseeing this aspect of the study and providing the THP with the knowledge and resources necessary to ensure that the data provided remains secure. Our Privacy & Security Advisory Council is filled with experts from industry and academia on these topics, including bioethicists and patient privacy advocates. We know you’ve gotten used to hearing about a company or government agency being hacked, but we can’t—and won’t—take any chances. The success of the THP depends on the security of its data and peace of mind of our volunteers.
The THP will exceed healthcare industry levels of privacy protection, and combine those protections with a robust cybersecurity infrastructure to make sure that your data is properly anonymized and secured. We will use a state-of-the-art data warehouse in a secure location that will only be accessible to researchers approved by our Data Governance Advisory Council and under the supervision of THP staff when accessing the database.
Participants as Partners
Participants in our study will contribute a complete catalog of information about their health, environment, and lifestyle to form a rich data repository. The resulting research platform, powered by our participants, will be available to researchers across diverse disciplines to probe the confluence of factors that shape individual differences in outcomes.
However, where past studies involving humans look at their subjects as simply that, participants for The HUMAN Project will not only be providing their data for the Project, but will be actively engaged in the governance of the Project. Members of the THP will have the opportunity to be a part of the Project’s Research Governance Advisory Council, which will vet the research proposals that would use THP’s platform.
Researchers will submit their research applications to this council—which makes sure the research has merit, is ethical, and has safe outputs—and if approved they would only have temporary access to just the data they need to conduct their research. Anyone working with the data would have to do so at the Project’s on-site facility under supervision; they wouldn’t be able to take the data with them, and they wouldn’t have access to the main database.
The HUMAN Project’s participants will be an essential conduit for communicating the research conducted with THP data to their fellow study volunteers. Even more importantly, participants will be contributing their data for the greater good of their community, in addition to helping accomplish groundbreaking science.
Interested in being a participant in our study? The makeup of THP’s study population will represent all of New York City. As a result, our study participants will be selected at random using rigorous survey methodologies to be as representative a sample of the population of New York City (all five boroughs) as possible. But if you live in New York City we hope you join the study will if you’re selected!
Frequently Asked Questions
However, some people will ultimately leave New York City. The outmigration rate in NYC is surprisingly low. Although thousands of people move out of NYC every year, it is actually only about 5% of the total city population. As a result, we expect that we would lose about that percentage of our study population to outmigration each year. However, even these levels of outmigration are not necessarily detrimental to the survey, particularly as so much of the data collection will be automated. We expect that we will still be able to follow those who move to the nearby suburbs or leave the area temporarily (such as elders traveling to warmer climates for the winter or students traveling to college), as we can make face-to-face contact with these participants without too much difficulty. Even those who permanently leave the New York City area could be at least partially retained, as long as they allow us to continue all passive and non-physical data collection. Only those who migrate out of the country will be completely lost from the study.
Privacy and Security
Three features of the data marts enhance the security of the data. Each data mart is created for a specific project, and researchers have access to only the data mart(s) required for their own project for the amount of time required to perform the necessary analyses. After the researcher is finished, the data mart is removed by deletion (though the data itself always remains safely stored in the facility in its original form), so that it is not vulnerable to unauthorized access. The data marts themselves are thus heavily partitioned project silos.
Other security measures include integrity checking of the data that comes off participants’ phones, computers and outside servers, detailed network segmentation, login and behavioral monitoring of activity on the network and stringent access controls (both physical and electronic).