"All Of Us": A Research Program Focused on the Individual
“All of Us”: A Research Program Focused on the Individual
“The average American commutes one hour a day.” “The average American sees a doctor four times a year.” How many times have you heard statistics like this?
The often-discussed “average American” is a combination of the American people’s diverse traits, needs, and experiences to develop one generic point of reference. Most medical care and treatment protocols were developed based on this outdated idea of the so-called average person, with White males historically serving as the basis. The National Institutes of Health’s (NIH) All of Us Research Program shifts the focus to each individual because no one is an “average American.”
Differences in race or ethnicity, sexual orientation, gender identity, disability, and geographic or financial access affect our health in many ways. Treatments based on an average do not consider these differences, which can cause some people to experience poorer health outcomes.
How can health equity — a fair and just opportunity to be as healthy as possible — be advanced when we ignore the socio-cultural elements that can lead to health disparities?
Instead of consolidating data into an average, we need to expand the breadth and depth of data to address health disparities as well as individuality, thereby advancing health equity and health outcomes. The NIH’s All of Us Research Program can help move the entire health system toward that goal.
What is the All of Us Research Program?
The All of Us Research Program gathers a broad range of health data on people from all backgrounds, including those who historically have not been fully represented in health research programs. It aims to build a large database that reflects the diversity of the people of the United States. Custom tools and software on a secure platform help researchers analyze the data and ensure it is included in future health research studies in a secure manner. This critical data may help researchers develop more effective treatments and potentially improve access to equitable healthcare for more people.
What Makes the All of Us Database Different?
NIH’s All of Us seeks to enroll at least 1 million or more people in the U.S. who will continually share their unique data over an extended period. The database will be one of the largest of its kind, making it easier for researchers to detect emerging patterns.
A wide range of sources will fuel the database — from standard lab results to apps and devices like fitness trackers to electronic health records. Making this data easily available to scientists and researchers while keeping participants’ personal information private is paramount to the program’s success and key to leveraging its power. Also vital is empowering program participants as partners, meaning they can choose to access their information and have a say in how the program is run.
How Does the Precision Medicine Initiative fit in with All of Us?
Simply put, the federal Precision Medicine Initiative is about seeing and treating people as individuals in an effort to improve health. Precision medicine focuses on what makes people unique: where they live, their lifestyle, their current health state, as well as their medical history, family history, and genetic makeup. Researchers can use All of Us data to help make personalized recommendations for patients based on their health factors — not those of a fictitious average American.
How does the All of Us Data Contribute to Important Discoveries?
More than 99% of the DNA in any random group of people is identical. It is the remaining 1% that provides the greatest insight into genetic variances. Genetic variances make individuals unique and can help determine if they are predisposed to specific health conditions. There are several examples in which All of Us data helped uncover new information:
- Researchers used the All of Us data to discover that people with a variant in the G6PD gene were more likely to develop a specific form of anemia. The All of Us data helped identify a total of 118 G6PD variants.
- By using the data in over 125,000 electronic health records of All of Us participants, researchers found a correlation between high blood pressure and increased risk for developing dementia but did not find the same link with Type 2 diabetes.
- In another discovery, researchers accessed Fitbit data shared by All of Us participants and compared it to data in their electronic health records to learn whether taking 10,000 steps each day can really improve health. After analyzing more than 1,700 conditions, they determined that people who took at least 8,200 steps per day had lower rates of certain health conditions, including sleep apnea, acid reflux, and depression.
Who Pays for the All of Us Research Program?
The program, part of the NIH, is funded through the federal government. Researchers, technology companies, community groups, healthcare providers, and other related entities can apply for grants and funding through the program to conduct studies and collect data that will enhance the database.
What is Elevance Health’s Role in All of Us?
We strongly support the goals and methods of the All of Us Research Program. We promote the program because we believe it can help shape the future of healthcare by addressing health disparities, making solutions more personal and thereby improving outcomes. We are dedicated to advancing health equity so all people have a fair and just opportunity to be as healthy as possible. If you would like to learn more, visit the All of Us Research Program website.
Editor’s note: All of Us and Precision Medicine Initiative are service marks of the U.S. Department of Health and Human Services. Elevance Health and Scripps Research are funded by National Institutes of Health Award U24 OD023176.
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