How the All of Us Program Handles Suspicions of Participating in Healthcare Research Among the Black Community

In this final part 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: Partly because of the Tuskegee study and Henrietta Lacks case and because of structural racism, there is reluctance and suspicion about participating in healthcare research in the Black community. How will All of Us deal with those beliefs and obstacles?

A:
I completely understand why some people may be reluctant due to what are these really horrific medical atrocities. So first and foremost, I want to acknowledge and really point out that yes, they did happen, because we cannot pretend they did not. However, the All of Us research program is actually quite different from almost any of those other programs that happened before.

The first thing is, the program isn't doing the research itself. It is simply creating a database from all of the information that is volunteered by the participants, that the participants themselves are making available for the researchers who then are going to again have to undergo a very rigorous vetting process to get access to the database. Every identifiable piece of information is completely stripped out of that database before it enters before we enter it. And everything is stored in state of the art platforms that are very secure.

The second thing is our volunteers are really partners. These partners really helped to shape the program as we go along. If you were to participate in a program you can share as much information or as little information as you're comfortable with. Because this is a partnership, it really will help improve healthcare for generations to come. Unlike a lot of traditional research studies that only focus again, on one disease, a one group of people, All of Us is building this very big database that can inform many studies on a variety of healthcare issues that are present. People will come up with their own researchers, will come up with their own questions, and then come to the database to really apply them.

To a certain extent, All of Us is going to be really able to have a lot more success at addressing more than one disease, and more importantly, enable the researchers to really focus on what we call precision medicine. What will work for this group may not work for another group, and then really be able to delve into why it will enable the researchers to ask any number of untold questions. So we're not going into this thing like "here are the questions that we want to answer," because we don't know what those questions are. We really are opening it up. This way, generations even behind us are going to come in and be able to use this database as technology improves. Also, the sample gets older because this is a longitudinal study. Now, we're going to have 10 years, on average, of data points for every participant that volunteers. That's the goal.