All of Us Research Program
About All of Us Research
In May 2018, the National Institutes of Health (NIH) announced that national enrollment for the All of Us Research Program, a momentous effort to advance individualized prevention, treatment and care for people of all backgrounds began. People ages 18 and older, regardless of health status, are now able to enroll.
NHMA and All of Us Research
The National Hispanic Medical Association is proud to be a partner of All of Us Research as it seeks to transform the relationship between researchers and participants, bringing them together as partners to inform the program’s directions, goals and responsible return of research information.
Minorities make up 38% of the U.S. population and are on track to rise to over 56% of the population. But they only make up 10% of clinical trial participants.
Populations underrepresented in biomedical research populations include ethnic minorities, as well as age, sex, gender, sexual orientation, income, education, geography, access to care and disability.
African Americans make up 13.2% of the U.S. population, but only 5% of clinical trial participants nationwide.
Hispanic people make up 17% of the U.S. population, but only 7.6% of NIH clinical trial participants and 1% of clinical trial participants nationwide.
Innovative Aspects of All Of Us
- Diversity at the scale of 1 million people: demographically, geographically, medically, and especially those underrepresented in biomedical research
- Diversity of data types collected longitudinally: clinical, environmental, genetic, behavioral, socioeconomic
- Focus on participants as partners: included in governance, invited to co-invent systems and give input into the science, choice to receive all data and information back
- National, open resource for all: open to the public and all researchers, open source software & tools
What is the promise for participants?
- An opportunity to help fight disease and improve the health of future generations.
- A chance to learn about your own health, including personalized risk factors or exposures.
- The ability and choice to access your own data, including increasingly rich health records.
- An opportunity to ensure that your community is included in the studies that lead to new understanding and new treatments.
- A chance to learn about additional research opportunities that may interest you.
- The choice to meet others like you, perhaps even joining some of them to propose & do research.
As a participant in the All of Us Research Program, your journey might look like this…
- Learn about the All of Us Research Program
- Create an account
- Give consent to enroll and share your data
- Share your electronic health records
- Respond to surveys
- Get measured and provide biosamples
- Track and view your data