Solomon Crenshaw Jr.
For The Birmingham Times
Cathy Cartagena is a program manager for the All of Us Research Program at UAB, but she is never far from her initial role as a recruiter for the program.
“It has been 16 years now at UAB and everyone can tell you that I’m a natural recruiter,” she said. “Once you convince me about the program, you’ve got me.”
Cartagena recalled wearing an All of Us jacket on a winter trip to New York. During the trip, another passenger asked her about the program.
“I gave her all the information about joining and she didn’t even live in Birmingham,” she said with a laugh. “I said, ‘You need it. You need to check on this … find a location near you. Please enroll.
“Once we got to that certain level in the air that we got wi-fi, she went online and she enrolled,” said the program manager whose roots extend to Puerto Rico. “My husband would say, ‘You are crazy. Can you stop thinking about your job one minute?’”
He, like most of Cartagena’s friends, know the answer to that question is an emphatic, “No.”
“When you see the opportunity, that is the time,” she said. “Everyone who comes to my life, I’m going to share the good stuff that I have for them (on) All of Us. I take every opportunity to share with everyone, specifically with minorities because I know all the barriers we have been going through as minorities.
“It is important to me,” Cartagena continued. “I want to get to the point where we are on the same level with all the health systems, the outcomes, the results, and all the information for us as minorities. That’s my passion.”
That passion grew out of seeing the benefits of the program when she began her tenure as a recruiter.
“When I was in training and seeing all the benefits, I got so amazed (by) the way that the program was presented to me that I wanted to share with everyone,” said Cartagena. “Actually, everyone who knows me (knows) I’m always recruiting, even if I’m working or not. To me, All of Us is (such) an amazing program, looking forward to the future (to) we’re going to have in the next few years.”
In a few words, could you explain what the All of Us Research Program is?
Cartagena: This has been actually one of the largest research programs from the NIH (National Institutes of Health). And the intention is to try to help researchers understand why people get sick or stay healthy. That’s one of the main purposes of this program.
What will participants be asked to do?
Cartagena: First, we have to create an account because you use a portal, a digital portal for participants since this is at least a 10-year program. That person is going to have an account with us and start receiving some information in their account. It is all password protected. They’re going to give us consent to join, including electronic health record consent and consent to receive their DNA results. After that person completes those consents, they’re going to go through a few surveys. At the end, we’re going to get a sample of blood and that person has completed the entire enrollment.
How long would the program last?
Cartagena: It’s going to be at least 10 years. And I forgot to mention that once the participant completes the full enrollment, we’re going to give them a $25 gift card to say “thank you” for their partnership in joining the All of Us Research Program.
Who is eligible to enroll?
Cartagena: Any person who is older than 19 years old is eligible to enroll.
What are some of the benefits to a participant after joining the program?
Cartagena: We have multiple benefits but one of the most important benefits for me has been receiving a copy of my DNA results. We have the list of the things that need attention that we as a patient also want to be receiving. For me, that is another opportunity to be proactive, if I have something that I might need to share with my doctor.
What would you say to someone who is hesitant about signing up for the All of Us Research Program?
Cartagena: To be honest, we have that kind of participant every other day. They ask me and I always share my experience as a participant, but I also share my history about why it is important for me as a woman. If I get breast cancer today, I will want to get the best outcome, the best result. But at this point, we have general information to give you. The purpose of this program is to get more personalized information on each type of race or each type of person in the future. Like individual medicine, that is what I always say. If you think today what happens to you if you get a certain condition, you want to get the best outcome. Once people understand the importance to be part of the program in order to have the new changes, that is what always changes their mind to say, ‘Oh, that’s right.’ When my mother got cancer and when we got that terrible news, all of us who were in shock. We were trying to find all types of treatment, even out of Puerto Rico, even here in the United States. We went everywhere, calling everywhere to get the best results. In order to be part of change and better health outcomes, we have to be part of the partnership and be part of the program in order to get a better outcome.
What if I’m already part of the All of Us Research Program? Is there any more that I can do?
Cartagena: Yes. Over the next few years, participants are going to continue receiving some surveys and also some other information from your DNA. My best recommendation is always to continue checking that portal that you created – that account – and be looking for those surveys or any extra information available from All of Us.
If a participant doesn’t have access to a computer, how can they stay involved in the program?
Cartagena: We have several options. We have a CATI (computer-assisted telephone interview) program. That is a system where we do a video conference with the participants. CATI is available to those participants who are still interested in participating, not only for those who (don’t have) access to a computer but also for those who maybe are not friendly (with the) computer . We help the participant if the participant doesn’t know how to navigate the portal, or (if) those kinds of surveys are kind of confusing and the participant doesn’t know how to fill it out, we help them do that also. We also have an option that if the participant wanted to come to set up an appointment with us on site, we set up an appointment for that participant to meet with a recruiter or a navigator specifically for that person. We also have that service in Spanish so people who speak the language can go through the whole thing (enrollment process) in Spanish, even the surveys.
… to great information? [FD1]
need help with this section please [FD3]
You can’t consent participants through CATI, correct? [FD7]
Maybe just say “We help them go through some of the enrollment steps and surveys.”? [FD8]