Almost 200,000 people have already signed up to a new research program that could mark a “turning point in personalized medicine”. The National Institutes of Health’s (NIH) All of Us initiative aims to collect and anonymize the data of more than 1 million Americans and make it freely available to approved researchers.
During the first in a series of live-streamed conversations with medical experts, Dr. Dara Richardson-Heron, the program’s Chief of Patient Engagement, and NIH Director, Dr. Francis Collins, outlined the scheme.
“This is an ambitious effort to partner with 1 million people or more to speed up health research advances that will result in more personalized and effective prevention and treatment for all of us, based on our own lifestyle, environment and biology,” observes Dr. Richardson-Heron.
The All of Us program will collect genetic and health status information, as well as data on lifestyle, racial and socioeconomic backgrounds.
Ten-year follow up
The intention is for everyone who signs up to be followed-up for at least 10 years. Members will regularly be asked to take part in surveys and other activities designed to help researchers gather real-world data on health and lifestyle.
Having led the Human Genome Project in the 1990s, Dr. Collins explains: “It wound up with the complete sequence of all the letters in the human DNA instruction book in 2008. “Sixteen years later, we are seeing the opportunity to use that along with other kinds of information about environment, health behaviors, socioeconomic status and social background — all the things that play out in terms of whether someone has the opportunity to enjoy good health or whether illness is threatening, and, if it is, how best to manage it.”
To fully understand all that, Dr. Collins points out, researchers needed access to the data of lots of people from a variety of backgrounds, including those who are not usually included in research. “We are looking at all the things that play out in terms of health disparities.”
Three-quarters from under-represented populations
Of the more than 195,000 people who have already signed up, around half are from racial and ethnic minority groups, and more than 75 percent are from populations traditionally under-represented in research. More than 117,000 people have provided biological samples so far, around 500,000 surveys have been completed and members are even sharing their Fitbit data with the database.
Over the coming year or so, the project is set to expand, offering members the ability to compare their own health and wellbeing status with that of other participants, and is even gearing up to enroll children.
“We will learn so much from this,” concludes Dr. Collins. “This will be written about decades from now as one of the signal moments when we went from a one-size-fits-all approach to medicine to understanding things about individuals that allow them to live healthy lives, or, if they do fall ill, to get the kind of interventions that are right for them.”
For more information, or to sign up, go to www.joinallofus.org