UC Irvine (UCI) is one of the Institutions selected by the National Institute of Health to lead the All of Us Research Program in California, and Dr. Hoda Anton-Culver is the Principal Investigator at UCI. This Research Program is a national effort that aims at engaging one million or more participants nationwide to change the future of health.
UC Irvine has been very successful in leading this effort in California. More than 194,000 people have already joined across the country.
Dr. Anton-Culver, what is the All of Us Research Program?
The All of Us Research Program is led by the National Institutes of Health and part of the larger Precision Medicine Initiative. The goal is to engage one million or more volunteers living in the U.S. to improve health outcomes, fuel the development of new treatments for disease, and catalyze a new era of evidence-based and more precise preventive care and medical treatment. The mission of All of Us is simple: we want to speed up health research and change the future of health towards individualized care. Participants will share different kinds of health information over time to help build one of the largest, most diverse biomedical resources of its kind. Researchers will be able to access the data for a wide range of studies on different health conditions.
What is precision medicine?
Precision medicine is health care that is based on each individual. It takes into account factors like where you live, what you do, and your family health history. At the moment, health care is often one-size-fits-all. But imagine a future where your health treatments are tailored to you. This is called precision medicine. We can help make that future possible.
Why is UCI so successful in conducting the All of Us Research Program?
I think we are successful for a number of reasons. Our research team strongly believes in the importance of this research program as an unprecedented opportunity to change the future of health for our people, our community and our society. We created an amazing network of local healthcare providers, clinic staff members, and collaborators who are enthusiastically helping to promote the mission of the program in different ways. Our staff members are very well trained and mostly bilingual to overcome participants’ language barriers and cultural differences, and the positive experience of our participants is of paramount priority. We work together as a team to accomplish this important mission.
Why should someone consider joining All of Us?
People join for many reasons: to learn more about their health, to help improve the health of their communities and future generations, to help researchers find the best ways for people to stay healthy, and to help researchers one day create better tests and treatments. The longer a person stays involved with All of Us, the more they can learn about themselves and help speed up health research and medical breakthroughs.
Can anyone join?
Yes, all eligible adults, 18 years old or older can join.
What does participation involve?
People can create an account by visiting JoinAllofUs.org and provide their consent to get started. Then they’ll be asked to share their electronic health record and complete surveys. They can do all of this from their computer, tablet, or smartphone, or at one of our locations listed below. They will come to our clinics to have their physical measurements taken and to provide blood and urine sample. At completion of these steps, they will receive a $25 gift card. The All of Us Program will last for at least 10 years. We hope that participants will stay involved over time, responding to questionnaires and participating in other activities as they become available.
What do people need to do to participate at UCI?
The All of Us Research Program is important in Orange County because of the diversity of our population in this area, which includes Asians, Hispanics and other diverse populations including low socioeconomic people who are in general underrepresented in biomedical research.
What will you do to protect participant’s privacy?
We will take great care to protect participants’ information. Here are a few of the steps we will take: a) Information we have about participants will be stored on protected computers. We will limit and keep track of who sees the information; b) we will remove names and other direct identifiers (like your Social Security number) from the participants’ information and replace them with a code; c) Researchers must promise not to try to find out who the participants are. d) We will tell the participant if there is a risk to privacy because of a data breach. e) The All of Us Research Program has Certificates of Confidentiality from the U.S. government. This will help us fight legal demands (such as a court order) to give out information that could identify the participant.
Why is All of Us Research important for Orange County?
The All of Us Research Program is important in Orange County because of the diversity of our population in this area, which includes Asians, Hispanics and other diverse populations including low socioeconomic people who are in general underrepresented in biomedical research. This helps to know more about their health and their risk factors for developing diseases. If we want to do meaningful research for the entire country and not just certain subsets of communities, we’re going to need broad participation. We are particularly interested in groups that are currently underrepresented in biomedical research. As leaders of this research program it is our responsibility to make sure that “all of us” have the opportunity to participate in the program and make a difference. Therefore, we will do our best to engage our community, earn people’s trust and give them the opportunity to participate in this research program.
Where can someone learn more about the All of Us Research Program?
Our staff members will be happy to answer any questions you may have. Please call us at (949) 824-0282. You can also visit allofus.health.uci.edu to learn more about the program.