By Ariel Worthy
The Birmingham Times
The goal of the All of Us Research Program is to help researchers understand more about why people get sick or stay healthy. People who join will give information about their health, habits, and what it’s like where they live. By looking for patterns, researchers may learn more about what affects people’s health.
James Cimino, M.D., director of the University of Alabama at Birmingham (UAB) Informatics Institute is co-investigator for All of Us. Here, Dr. Cimino discusses the program.
What is your role with All of Us: There’s two parts to the data collection that goes on. There’s the data that happens when participants are enrolled; collect information about their health, demographics, family history. That information is collected directly by the All Of Us Data Research Center. A navigator helps with that part. The data that they are interested in from us is the data that comes from the electronic health record.
All of the sites that are enrolling participants have electronic health records, they are enrolling patients who are in their system. That way they can get more data in their system. Maybe laboratory records, medication records, diagnoses that may happen during and outpatient or inpatient visit. Initially they were just starting with very simple things: drugs, allergies, lab results, demographics. Now they’re going with a broader list of data including full text notes. It would be basically dumping our electronic health record to the All Of Us Research Center.
I’m in charge of coordinating our local group to providing data out of our system, but also to help each of our partner groups if they have any trouble. Most other groups may not have an informatics group, they may just have an IT department. Getting the data out, getting it in standard form and sending it out is basically the job.
Is there a reason to worry about having such personal information out electronically? Well, there’s always a reason to worry about hackers and such things. But we have not had any incidents. We have a great security system here. Hackers would be more likely to shut our information down than actually get in our data system. But we have a secured channel for encrypting data and sending it to a secure server. It only comes from our machine to their machine so they know it can only come from us. It’s as secure as we could possibly make it.
What is the significance of being able to use technology for a research project like this? When we do research on human studies, we have to find people that are appropriate for the study. If you’re looking at treating diseases with a certain drug, not only do you have to have that disease, you have to find people who don’t have other things, like other diseases, or they can’t be too young or too old. Then once you start doing that, you have to find enough people. A lot of research projects fail because they don’t have enough subjects. So All of Us will provide a basis for individuals who would be eligible for studies, or who may be interested in participating. That doesn’t mean you have to participate. That just means a pool of people who are eligible might be available. The second thing is the ability to study populations in a longitudinal way, that is over a period of time. Because we’ll continue to send data quarterly, then researchers will say ‘Okay, people who have this condition, what happens to them over time?’ And we call that a ‘natural history study’. When we have patients who are put on a certain drug, we can have two patients with the same condition who were put on different drugs and look at them. Then maybe actually see if we could compare the outcome of those two groups. We could do a lot of those studies that don’t cost anything except time to do the data analysis.
Why is it important to have a diverse group of participation? If we’re going to do research that’s going to be meaningful for the entire country and not just certain subsets, we’re going to need broad participation. The Veteran’s Administration does lots of research but not too long ago, most of their research was just on male subjects, so they weren’t appropriate for women. We have a lot of groups that are underrepresented in research.
MORE ABOUT ALL OF US
The All of Us Research Program is a large research program. The goal is to help researchers understand more about why people get sick or stay healthy. People who join will give information about their health, habits, and what it’s like where they live. By looking for patterns, researchers may learn more about what affects people’s health.
The mission of All of Us is to speed up health research. One million people are being asked to share their unique health data. This information will be added to a database. Researchers can then access this data to conduct thousands of studies on health and disease.
The goal for the entire Southern Network of All of Us is 20,000 participants per year for five years, total of 100,000. The Southern Network is Alabama, Mississippi and Louisiana.
For more information call (855) 282-2863, email firstname.lastname@example.org, or visit JoinAllofUs.org.