What is 'All of Us' all about?

Last year, the National Institutes of Health announced the All of Us research program. The goal of this project is to collect genomic data from more than one million participants, in order to use that data for research. Ultimately, All of Us hopes to gain a better understanding of how biology, environment, and behavioral choices impact health, and to use that information towards advancements in precision medicine. By providing genomic and health data, the All of Us program considers it's participants as "partners" in research, and aims to contribute to advancements in precision medicine and improve methods of disease diagnosis, management, and treatment.

I joined All of Us at the end of March, for two reasons. First, I simply wanted to learn more about genomic health, and I had head that All of Us, despite being a research program, does inform their participants of any health information they discover based on the data you submit. Secondly, I wanted to experience what it was like to be a participant in a research study, with the goal of being able to experience the patient's perspective with regards to clinical research. 

I had first heard about the All of Us research program at a conference I attended at UCI where it was announced that UCI would be one of the participating medical centers for the project. What initially drew me to All of Us was the emphasis on obtaining a research population that reflected the diversity of the United States. Currently, most genomic databases are disproportionately comprised of samples provided by individuals of European descent. So, when I finally decided I wanted to be a part of the All of Us research, I decided I would document the process on my blog!

I just want to make it very clear that this post is not written in collaboration with the All of Us program, and is more an opportunity for me to share with you my experiences as a participant!

The Consenting Process

Since I currently work in clinical research, I was really curious to see how I would be consented for this research program. I've been present for many screening visits, and have observed many individuals be consented for different studies and because of this I was wary about the consenting process for All of Us. The program aims to consent over one million participants, which is a much larger scale than any of the studies I have ever been a part of. I assumed that my consenting process would not be done by a representative of the research program, who would be available to me to answer any questions that I had or could assess whether or not I had a complete understanding of what I signed up for. 

At first, I had assumed that I would be given a general consent form online and asked to read a long document (that, admittedly, I would probably skim through) and asked to check a box, agreeing that I read and understood what was being required of me. This was a concern for me because (in theory) pretty much anyone* with an internet connection could sign up for All of Us; and in a culture where most people click 'agree' before actually reading the "Terms of Agreement" (I'm guilty of this), I could see how this would result in uninformed consents. 

*Not just anyone can sign up for All of Us, currently they are not recruiting individuals in prison.

However, I was pleasantly surprised to see that the consenting process was extremely interactive and engaging. Each section of the consent form was broken down in to short animated videos that explained (with captions) exactly what would be asked of me, should I choose to participate in All of Us. The videos were entertaining to watch and brief, which kept my attention–which was important because at the end of the entire consenting process, I was given a little quiz to assess whether I fully understood what my participation entailed! I also learned that consenting could be completed at a participating site, with the assistance of a representative. 

Getting Started

Overall, I was pretty impressed with the consenting process for individuals who chose to sign up for All of Us online. The user interface of your account is clean and appears to be pretty simple to navigate, which is definitely appealing both aesthetically and technically. Once the consenting process was completed, I was asked to complete some initial surveys. 

I finished all my surveys, but they appear as little modules for you to complete!

Right away, I loved how detailed each of the surveys were. They took the time to try to represent each ethnic group, and was much more expansive in providing extensive options for gender identities and sexual orientations. In all honestly, as someone who identifies as queer, in a very vague general sense, I felt very validated by having an option I actually identified with! The surveys were quick, and communicated effectively that not all answers were required to continue participation in the study–which was good because some of them were extremely personal.

Another little feature that I really like is the ability to compare your responses for the basic survey to the other participant responses! For me, this conveys a huge sense of trust and transparency between the program and it's participants. In clinical trials that I've worked on in the past, everything is very tight lipped, for good reasons, but being able to see how you fit in amongst the (soon to be) one million participants is really cool! 

How my answers for marital status compare to other participants!

Initial Thoughts

Overall, I was impressed at the design of the All of Us online portal and consenting process. All of the information easy to understand, and I could tell that a lot of thought went into making everything accessible for all participants. I am excited to see what kind of data comes of the All of Us project, and I am excited to know that my health data may contribute to new research. I am definitely eager to contribute biological samples, height, and weight data to see how that impacts my All of Us profile. However, I am reluctant to release my electronic health records, mostly because I haven't even seen those myself! Perhaps in the future I will feel more comfortable, but for now I will be keeping my electronic health records and social security information to myself. Here's to the next 10 years!