The purpose of the All of Us Research Program is to help researchers make discoveries.Your electronic health record (EHR) contains information about your health care. You can choose to share your EHR with researchers. Your EHR information may help speed up health research and medical breakthroughs, which is the purpose of the All of Us Research Program. So how does your EHR get to researchers?
First, we gather your EHR data. To do this, we will write a small computer program called a query. The query looks for specific data in the EHR. It gathers these data from your EHR and from everyone else who has said yes to sharing their EHR.
Then, we need to standardize the EHR data. This means we label it clearly using standard terms. We also format the EHR data so it matches the central All of Us database. Finally, your EHR data is sent to the central All of Us database.
Small teams of computer experts do this work for the All of Us Research Program. They have special training in how to keep EHR data safe. These teams may work directly for your health care organization or for a service provider. A service provider is someone who is helping with a part of All of Us — in this case, getting EHR data ready for the central All of Us database.
It is important to note that we will try to access your EHR data from everywhere you have gotten health care. This means that we will ask other health care organizations and providers if they have any of your EHR data. If they do, we will ask them to gather, standardize, format it, and send it to the central All of Us database.
When your EHR data gets to the central All of Us database, there is more standardizing and formatting to do. Again, small teams of computer experts to this work. They also have special training on how to keep EHR data safe. This includes using state-of-the-art technologies and processes to protect the data you give us from being destroyed, tampered with, or stolen. These experts work for the All of Us Data and Research Center (DRC). Once the DRC finishes its work, EHR data is ready for researchers to use to make discoveries.