If my patient decides to participate, will they be required to change physicians?
They will not. All of Us is not a clinical care program, so patients who opt to participate may keep their current health care teams.
What happens if my patient finds out they have a previously undetected disease?
The All of Us Research Program is a research effort, so it cannot provide any health care.
Right now, the program doesn’t know what tests it may do on blood and urine samples. It also doesn’t know when testing will occur. It may be months, or even several years, until certain tests on samples are conducted.
The program will share the numbers they get back from the tests and may provide educational materials to help participants learn more about the tests. The program always recommends that participants talk to their doctor about their health care needs and concerns.
How will the privacy and security of participants’ data be ensured?
The protection of this data is a top priority of the project. Here are a few of the steps the All of Us Research Program will take:
- Information about participants will be stored on protected computers. The program will limit and keep track of who see the information.
- The program will remove participant names and other direct identifiers (such as patients’ date of birth) from participant information and replace them with a code. There will be a master list linking the codes to names, but the program will keep it separate and secure.
- In order to work with participant health information, researchers must promise not to try to find out who participants are.
- The program will tell participants if there is a data breach.
- The program has Certificates of Confidentiality from the U.S. government. This will help the program fight legal demands (such as a court order) to give out information that could identify participants.
The AMA recently held a webinar providing more information about All of Us. It is available for viewing on demand. The AMA offers online CME on a series of precision medicine education courses to expand your knowledge. Explore precision medicine CME.