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In this first of a two-part video series, Briana Contreras, associate editor of Managed Healthcare Executive spoke with Dr. Sheldon Fields Associate Dean for Equity Inclusion and Research Professor in the College of Nursing at Penn State University, about the ongoing All of Us research program. All of Us is an initiative through partners of the National Black Nurses Association, which Fields is vice president of, and the National Institutes of Health that invites one million people across the U.S. to help build one of the most diverse health databases in U.S. history.
Below is a brief Q&A from the interview with Dr. Fields. The text has been edited for clarity and length.
Q: What inspired the All of Us project? Is this an effort to correct the under representation of black patients in healthcare research?
A: The National Institute of Health actually formed something called the Precision Medicine Initiative working group of the Advisory Committee to the director of NIH back in March of 2015. The group concluded its work in September of that year, with a very detailed report. That report provided a framework for setting up the All of Us research program. This program was stretched over 10 years, but it may go even longer.
Now, All of Us is actually working to improve healthcare through research. Unlike research studies that focus only on one disease or one group of people, All of Us is really building a very diverse database that can inform thousands of studies on a variety of different health conditions. Also, it is trying to correct some underrepresentation. Everyone is different. You know, where we live, how we live, even our background can all affect our health, right? So what works for one community might not necessarily work for another community.
So, by helping correct those representation gaps that we know we have in the research, we can address specific diversities in healthcare. Also, researchers know less about patients who are underrepresented in healthcare research. By studying data from as a diverse group of people as possible. We researchers can really learn more about what makes people sick, or what keeps them healthy. What researchers learn could also lead to a better treatment and disease prevention for everyone.
Q: How does the program work? Who is able to participate?
So we're really, really clear and we really do mean that anyone is welcome to participate.
The All of Us research project is free to join. It will remain free to participate in. Anyone can sign up directly by going to the website. Join AllofUs.org, or at any participating healthcare provider organization.
It works like this: people will take part in a program by answering surveys on different topics, they will be asked to share their electronic health record, they may give samples of blood urine and your saliva for lab and DNA tests. The information that participants share through All of Us will then go into a very secure database. Then researchers from all over the world will have to apply to use that database to actually study the different health conditions that are that are present within the million people sample. This really will lead to better treatments and for better ways of preventing all kinds of diseases.