All of Us Program Reaches 110,000 Participants – What’s Next?
By Jeemin Kwon
The ambitious national research program launched in 2018; how far has it come, and what will come out of it?
The All of Us health research program, run by the National Institutes of Health, started in 2018 with a lofty goal: enroll one million people to advance precision medicine (aka personalized medicine). The more data points researchers have, the easier it gets to identify the signals in the noise that makes each of us unique individuals; with this information, researchers can develop treatments designed to treat you, not an average population. Nine months later, the participant count has reached 100,000, and by mid-March of 2019, it was well over 110,000 which is a great milestone but still far from the finish line.
Anyone who lives in the US, is over the age of 18, and has an email address is eligible to join. All it takes is creating an account here. From there, the portal will take you through a consent process (a step required by all research studies) approximately 15-30 minutes long. Once you consent to the study, health questionnaires become available, as does the option to make an appointment with a local participating clinic to share health data (height, weight, waist circumference, etc.) and biosamples (blood and urine). As of now, the program has not run tests on any biosamples collected from participants. Participants who share biosamples are offered a $25 gift card. While this level of participation is encouraged, it’s not mandatory.
There are plenty of reasons to consider contributing your personal health data to All of Us. The project has great potential to drive treatments that are tailored to individuals, rather than the “average” person. All of Us is also trying to do something most research trials fail to do: accurately represent the diversity of the population that will benefit from the research. Having health data that mirrors the racial demographics of the United States can help inform research questions and future benefits. Finally, you just might learn something about your own health, as all health data is returned and saved in your participant portal. The ultimate goal is to sequence participant DNA (opt-in only). Health data is not yet available to researchers, but the Research Hub is expected to launch later in 2019. Click here to learn more.
While we were preparing this story, we learned of a fantastic conversation series with Dr. Francis Collins, the Director of the National Institutes of Health, and Dr. Dara Richardson-Heron, the Chief Engagement Officer of the All of Us Program. (See below for a recording of the live stream; skip to 4:07). These two highly regarded and inspiring leaders discuss the importance of the All of Us Program, how far the research has come, and provides a preview of the future of the program!