Advancing health research to benefit future generations

All of Us Research Program marks first anniversary at UF Health

May marked the one-year anniversary of UF’s involvement in the groundbreaking nationwide All of Us Research Program. The mission for All of Us complements UF Health’s mission: to support health research and improve health for all Americans.

The National Institutes of Health-funded program is designed to gather health data from at least 1 million people within five years and follow participants for a decade in order to advance precision medicine. Precision medicine is personalized health care based on factors including where an individual lives, what they do and their family health history. Researchers will study the impact of differences in lifestyle, environment and genetic makeup on individual health.

In May 2018, UF joined the SouthEast Enrollment Center (SEEC), which includes the University of Miami, Emory University and Morehouse School of Medicine. More than 25 medical institutions are involved in All of Us. Data gathered by the All of Us Research Program will provide an avenue for use by researchers around the world.

“Our goal at UF is to recruit 15,000 participants from around the state over the next five years,” said Elizabeth Shenkman, UF College of Medicine chair of Health Outcomes and Biomedical Informatics and director of the Institute for Child Health Policy.

Shenkman and Dr. William Hogan, UF College of Medicine professor of Health Outcomes and Biomedical Informatics, are the co-principal investigators for both the All of Us Research Program at UF Health as well as the OneFlorida Clinical Research Consortium. OneFlorida is collaborating closely with the SEEC and serves as the data coordinating center for the consortium.

The UF study team has been recruiting participants including our own faculty, residents, staff, students and volunteers as well as community members. The regional network aims to strengthen the program’s reach into diverse populations, including lower-income, Hispanic and Latino, African-American and rural communities.

“This is the best way to contribute for anyone who wants to help improve health for future generations,” Shenkman said. “The breadth of this project will be astounding. All of Us has the potential to impact thousands of other studies covering a wide variety of health conditions.”

Participants are asked to complete surveys about their health, share their medical record information and contribute a blood and urine sample that will be used for genetic analysis. The SEEC has already contributed nearly 4,000 medical records to program from across the four institutions. This information is stored for researchers to apply to use to study different diseases, populations or trends over time. Precision medicine has the potential to allow health care providers to inform people about the best ways to stay healthy. If someone becomes sick, precision medicine may help health care teams find the best treatment for that individual.

According to Dr. David Nelson, senior vice president for Health Affairs at UF and president of UF Health: “The program needs participants who care about improving the health of everyone, people who are willing to share information about themselves that could help cure diseases in our lifetime. This initiative represents a new era for precision health to enable more proactive and personalized health care that empowers people to lead healthy lives.”

Visit UFHealth.org/research-study/all-us-research-program for information and www.joinallofus.org/en to enroll.

All of Us to date

• The SEEC has recruited more than 8,000 full participants to date.
• UF has recruited more than 1,100 full participants to date.
• UF coordinates data for the SEEC consortium. We have submitted approximately 4,000 electronic health records for this project to date.

Confidentiality: Safeguarding participant information

All participant data, including genetic data, are encrypted on protected computers that are security-tested regularly. Participants’ names and other direct identifiers, such as addresses, are removed and replaced with a code. The data will be accessible to researchers in the U.S. and around the world to accelerate health research and medical breakthroughs. There are strict rules researchers must follow to access the data to keep participant information secure.

Pictured above (from left) are co-principal investigators Hogan and Shenkman with Nelson in front of the All of Us bus—a mobile recruitment hub used during the UF Health kick-off event last May.