By Jessica Kent | May 8, 2018
The National Institutes of Health’s (NIH) All of Us precision medicine research program is now open to all individuals 18 and older nationwide, allowing participants across the country to contribute their data to a research resource that will accelerate innovation in medicine.
All of Us aims to collect clinical, lifestyle, EHR, and genomic data from at least one million diverse contributors to advance the development of precision medicine.
“Today, much of our medical care is ‘one-size-fits-all,’ not tailored to the specific needs of the individual patient,” NIH Director Francis Collins wrote in a recent blog post.
“If we are to make the biomedical breakthroughs necessary to realize the full promise of precision medicine, researchers need a lot more data that takes into account individual differences in lifestyle, environment, and biology.”
The program began its initial beta testing phase in May of 2017, aiming to collect data from 10,000 people and establish best practices for recruitment, patient privacy, and data storage before expanding.
Since then, NIH has broadened the program through partnerships with provider organizations that serve underrepresented communities from the Deep South to the Midwest.
In addition, NIH has collaborated with more than 12 professional societies and patient advocacy groups to promote participation, including the American Medical Association.
As of January 2018, more than 18,000 participants had at least started the enrollment process. Of those volunteers, more than 11,500 had completed the full participant protocol.
NIH intends to continue adding enrollment sites now that it has launched nationwide, especially in diverse communities across the country.
Individuals who choose to participate in All of Us will contribute their health data over time by completing surveys, having the option to share their electronic health records, providing blood and urine samples, or contributing data from wearable devices and sensors.
NIH will use advanced security to protect patient data and ensure privacy. The program has teams of experts that will conduct security testing and develop safeguards against the unintended release of data.
Researchers may use patient data to speed breakthroughs in several areas, including discovering biological markers that indicate disease development risk, establishing new disease classifications and relationships, or creating platforms to enable clinical trials of targeted therapies.
Collins also emphasized that the All of Us program will be a collaborative effort between researchers and volunteers. In addition to contributing their health data, participants will have the opportunity to learn more about their own wellness and what they need to do to stay healthy.
“Participation in All of Us will be a two-way street: each volunteer will receive copies of all the information that research program has collected about him or her. In fact, the longer you take part in All of Us, the more you’ll learn about your health and the various steps you might be able to take to improve it,” he wrote.
All of Us is expected to reach its goal of one million or more volunteers within the next five years, and NIH anticipates that children will be able to contribute their data within the next one to two years.
The All of Us research program has the potential to accelerate biomedical innovation and improve the health of communities across the country, Collins said, but participants must enroll in the program in order for that to happen.
“I ask you to consider joining me—and the many, many other Americans who are volunteering for All of Us—in building the foundation for a new era of precision medicine, both for current and future generations,” he concluded.