All of Us Research Program Seeks to Empower Patients, Healthcare Providers

Izzy Okparanta

Imagine a world in which researchers can accurately measure a person’s risk of developing a wide range of diseases and then provide them with individualized methods of prevention, treatment and care. That world is what the National Institutes of Health (NIH)’s All of Us Research Program is striving to create. All of Us seeks to enroll one million or more volunteers whose biological samples, along with lifestyle and health information, will be analyzed to give researchers better insights into the biological, environmental and behavioral factors that lead to disease.

“So much of what we’ve done in medicine over the years has not really taken into account individual differences,” said Dr. Francis Collins, director of the NIH. Through All of Us, “we’re really building a fundamental base of knowledge about how humans stay healthy or get sick, and what to do about it. I think the practice of medicine will be altered in profound ways.”

Recent widespread adoption of electronic health records, along with advances in data science and increased health research participation among Americans, are some reasons NIH cited for launching the program now. In fact, 84% of Americans say they are willing to share personal health information, assuming that appropriate privacy protections are in place, so researchers can better understand diseases and develop new ways to prevent, treat and cure them, according to a July 2017 national survey commissioned by Research!America.

“[All of Us] participants will be partners in research, not subjects, and will have access to a wide range of study results,” Collins said.

Any U.S. resident over age 18 is eligible to participate in All of Us by visiting the program website or through partner health care organizations. Children will be able to join in as soon as the next 1-2 years.

“We’re committed to ensuring that participant perspectives are considered throughout every aspect of the program,” said Dr. Dara Richardson-Heron, All of Us chief engagement officer. “Guaranteeing a voice to those who are typically underrepresented in medical research is step one.”

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We have health challenges in this country that science will provide answers for if given the chance and we haven't given science that opportunity
Mary Woolley, President and CEO, Research!America