The NIH All of Us Research Program

all of us signup graphic, showing patients with data in white circles on the left, tossing them into a hopper of a great machine, and on the right, a sciency section of the machine with scientists and the All of Us logo printed on the side facing us, all illustrated in a cartoonish style, culminating in shiny light bulbs coming out of the machine on the right with a person holding a clipboard and wearing a yellow t shirt

I signed up this week for AllOfUs, which is a (so far) 5 year project headed up by the NIH to try to gather a truly representative research population for the US. For decades, the rest of us have had to put up with the results of medical studies that rely on “normative” study populations that are made up almost entirely white men. So except in rare cases, medical studies that set standards for expected responses and outcomes for, for example, Black patients, or women, came from study populations consisting primarily of white men. All Of Us is intended to change that.
Because I literally owe my life to medical technology (because of the stem cell transplant used to treat my leukemia, as well as chemo and radiation therapies), I signed up, to try to help, to give back.

If you were to sign up, they might ask you to consent to share your health records, your blood sample, a urine sample, a mucous sample, data for your DNA, physical, mental health survey questions, lifestyle and fitness questions. They might take your body measurements. You would have control over what you volunteered to share, but there might also be privacy concerns, and in this digital age, security risks too. I wouldn’t blame you if you chose not to sign up, but I encourage you to have a look, know about the project, and talk about it. Maybe you know some people, who like me, are willing.

But if you felt like you could sign up, you might help diversify and make data for future research studies more representative of the US population, more useful to all of us. Which is rather the point.

If you’re interested in helping with that and you’re in the US, I strongly recommend having a look and seeing if you think you can trust the NIH and partner institutions.

The regional administrator and collector of data in my neck of the woods is UCSF, which has a very good reputation for administering studies, protecting data, and doing a lot of social good. I found I could trust them, and the NIH (whom I’ve had great regard for since both the HIV crisis as well as when I subcontracted to them in the 2000s), too.

If you’re curious, here’s the site where you can explore more about the program, and perhaps, sign up: https://allofus.nih.gov/

Here’s the specific URL for California programs: https://www.joinallofus.org/california


Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.