Imagine that a doctor knew everything about how your body worked: what makes it sick, what makes it better, what keeps it healthy. Diagnosing and treating your illnesses would be far more effective because treatments would be designed precisely for you. Now imagine that doctors had this information from a million people. They could discover why some people get sick and some don’t, why some medicines help some people but not others, and what factors may go together that result in people staying healthy or developing a disease.
That’s the idea behind the National Institutes of Health (NIH) massive research program called “All of Us.” We wrote about this last year when the program launched as a beta test. The big news now is that program enrollment is now open for participants nationwide. The researchers hope to enroll one million or more volunteers who are willing to share their health information. Researchers will then be able to use Big Data analytics to search for connections and commonalities among the participants that could be used to help identify traits that could have an impact on the diagnosis and treatment of disease.
Participation is open to anyone 18 years old or older. To join, you sign up on the program’s website where you will fill out enrollment and consent forms. You will then be asked to complete some online health surveys. Some participants will be asked to visit a local partner center where they will take your body measurements and samples of your blood and urine. The program may also ask you to share data from your wearables or other personal devices. Individual volunteers get to choose how much they participate and what data they are willing to share. All data will be encrypted and all direct identifiers such as your name will be removed. (The program’s website has more details about privacy protection and other data security information.) The data from the study will be made available to approved researchers; information from participants could be used to help thousands of studies through this single program.
Big Data analytics have already made breakthrough discoveries on important issues including diabetes and stroke. By making records from a million people available for study, this program could make huge strides at improving diagnosis and treatment, leading to better outcomes and lower costs for all.