HJBR Jul/Aug 2022

Q&A security models help ensure data is pro- tected and used ethically and responsibly. We remove any identifiable details before sharing any information with researchers; personal details will never be shared with law enforcement. Here are some specific ways we protect participant privacy: • We remove names and other identi- fying information from people’s data before researchers can see it. • We follow all federal, state, and local laws and regulations for keeping infor- mation safe. • We have strict internal policies and procedures to prevent misuse of data. • Experts regularly check our systems to make sure they’re secure. • We store information on protected computers. We limit and keep track of who can see it. • To work with your health data, researchers must agree to a number of rules. This includes promising they will not try to find out who participants are. • We will tell participants if there is a risk to their privacy because of a data breach. • We have Certificates of Confidential- ity from the U.S. government. They will help us fight legal demands (such as a court order) to give out information that could identify participants. Can insurance companies or anyone else use this data? Participant data is available for anal- ysis on a secure platform, the All of Us ResearcherWorkbench, and subject to strict data access policies. It may be used only by registered researchers for biomedical or health research. Access to the Researcher Workbench is available to researchers with an institutional agreement in place. Currently, any U.S.-based academic, non- profit, or healthcare institution can enter into our Data Use and Registration Agree- ment. Summary data is also made available to the public via the All of Us Data Browser at ResearchAllofUs.org. In order to protect participant privacy, all data is de-identified. What will I be asked to do when I take part in All of Us ? All of Us is free to join, and participation will always be free. People who take part in the program will answer surveys on differ- ent topics. They will be asked to share their electronic health records. They may give samples of blood, urine, and/or saliva for lab and DNA tests. The health information that participants share with All of Us will go into a secure database. Researchers all over the world can apply to use this data to study many different health conditions. This may lead to better treatments and ways to pre- vent disease. How can we learn more about All of Us ? Visit joinallofus.org/batonrouge. n “We want to create a research program that reflects the diversity of our country and includes communities that have not always benefited from health research. That’s why we need the help of healthcare providers whose opinions are trusted and respected.”