Nationwide Research Program Seeks Help from All of Us
Great advances in healthcare are possible only with the help of research volunteers. That’s why the National Institutes of Health (NIH) and hospitals from around the United States have launched the All of Us Research Program.
The bold goal of this program is to gather health data from one million or more volunteers nationwide. The physician researchers for the program will collect medical records, health survey answers, physical measurements, blood samples and urine samples and store them for future health research.
Elizabeth Karlson, MD, believes that the All of Us effort will uncover the subtle ways our environments, behaviors and biology work together to impact our health, which could lead to more personalized prevention, treatment and care plans. Dr. Karlson and Scott Weiss, MD, both epidemiology researchers at Brigham and Women’s Hospital (BWH), lead the All of Us program at BWH, which is one of over 50 collection centers nationwide.
“This project will help researchers learn how individual lifestyle, environmental and genetic factors work together to affect our health so that all of us can learn how to prevent and treat disease,” says Dr. Karlson.
More than 4,500 people have enrolled at BWH and other sites within Partners Healthcare. The data is expected to help accelerate understanding and drive breakthroughs for multiple diseases across diverse populations.
To volunteer, start online at joinallofus.org or contact one of your region’s collection centers, including the All of Us program at BWH. You will be asked to share electronic health records and fill out surveys. You may be asked to attend a free appointment to provide physical measurements, blood samples or urine samples. You may be given the option to continue providing data over the next 10 years. All steps are optional, and your information and identity are kept private.
Communities that have been historically underrepresented in research are especially encouraged to join the effort. One cornerstone of the program is its emphasis on enrolling participants who reflect the rich diversity of the U.S. population.
“Equitable representation in research is a necessity for improving population health and health care,” says Cheryl Clark, MD, ScD, a BWH All of Us co-investigator along with Robert Green, MD, MPH. “It’s important that we make all efforts to have scientific data reflect the diversity of the U.S. population.”
If the NIH reaches its goal of aggregating data from one million people, the information collected from such a vast number of volunteers will help to capture this diversity. Specifically, the All of Us data will allow researchers to examine the impact of factors such as age, sex, race, ethnicity, gender, sexual orientation, social determinants of health and environmental factors on physical and mental health.
“We want to make sure the treatments we develop really do reflect the needs of every person,” says Dr Clark, “which makes it so important that people from all walks of life participate.”