We must encourage participation in health research across generations

While Latinos represent approximately 18% of the population in the United States, fewer than 5% participate in clinical trials or other forms of health research. Being left out of health research could have a significant negative impact on Latino communities, especially when it comes to understanding how new drugs, devices and therapies affect different people.

Although Latinos are underrepresented in health research, that doesn’t mean that they don’t participate. NHCOA (National Hispanic Council on Aging) spoke with two Latinos from different generations – Baby Boomer and Millennial – about their experiences as both researchers and health research participants. 

A career in research

Freddy Pacheco, age 72, immigrated to the United States with his family when he was 18 from Cochabamba, Bolivia. His parents wanted to provide a better life for him in a country that was not dealing with political unrest and where he could obtain a good education. Mr. Pacheco attended college, got his Master’s in microbiology and began working toward a PhD. His career goal was to be a researcher.

Fast forward 54 years, Mr. Pacheco is now retired from a long fruitful career in allergy and immunology research at the region’s premier children’s hospital. He still teaches part-time at a community college – teaching future nurses about chemistry, biology and microbiology.

Mr. Pacheco spent some time discussing not only his career as a researcher, but also his experience participating in various health research initiatives.

What motivated you to want to work in research? I liked the challenge and the ability to discover new ways to address the challenges various diseases presented. I first realized that I wanted to be a researcher when I was pursuing my masters. As a researcher, I had the space to pursue my interests. I was always learning something new, and I was able to challenge myself in new ways while exploring ways to enhance the health of my communities and the greater population.

What were some of your biggest career accomplishments? The accomplishments that my research team and I were obtain include:

Identifying the causative environmental agents of allergies in children;

Developing rapid allergenic tests for mold and fungal spores – allowing allergists and physicians to communicate results to patients, eliminating wait times;

We were the first group to identify the major allergen in one of the most prevalent molds (Alternaria) for respiratory illness; and

Developing the extraction procedures for different environmental allergens – in which we were able to isolate allergens and purify them so that they could be used for allergy skin testing, which is still done today.

Have you personally participated in health research? Yes, I have participated in several health research studies. One study was a colorectal cancer screening study that looked at the efficacy of a culturally tailored touch screen computer intervention. The purpose was to improve screening rates among at-risk populations. I also participated in a brain health study that focused on the ability of exercise to improve cognitive abilities.

What are some of the benefits of participating in health research? I am helping researchers learn about different ways to improve health, and even if it is too late to help me, my kids and grandkids could benefit from my participation. It also lets me learn about my own health, and some of the studies are interesting. I also got gift cards for participating in some of the studies.

Did you have any concerns about participating in research? I did not have any concerns about the studies I participated in. But whenever I think about participating in research, safety is my biggest concern. Is this study safe. My studies were all safe. If I was participating in a drug trial, I would be more concerned about side effects.

Why do you think other Latino older adults are less willing to participate in research? I think it’s culture and a lack of exposure. In Bolivia, I do not remember it being a thing that people did. Here, in the U.S., you hear about research on the news and on the radio – it was not the same in Bolivia. I also think it is a generational thing. The benefits are not realized for many years to come, sometimes decades. It also depends on the type of research – people are more willing to take a survey than to be poked and prodded. Today, my children are more likely to participate in research because they grew up around research. They played in research labs and were taught from a young age about its value. In fact, two of my three children have become health researchers themselves.

Any closing thoughts? Latinos should participate in research to benefit our communities. When we are not represented in research, we lose out. New drugs, therapies, and interventions are advanced and it is unclear how they affect our people. Do it for La Raza!

A personal motivation for helping others

Christine Perez, age 29, is Puerto Rican and has worked in health research and running scientifically backed health interventions for the last five years. She received her master’s in environmental science. In addition to coordinating the All of Us Research Program education and awareness campaign for the National Hispanic Council on Aging, she is also a participant. She shared with us her personal story about why she decided to participate in All of Us.

“As a patient with psoriasis, I decided to participate in the All of Us Research program so that scientists and researchers can learn more about this skin condition and, in the near future, find new individualized treatments for people like me, who suffer from psoriasis. Unfortunately, psoriasis is a rare skin condition that has no cure. While there are a number of different treatments (medications, topical creams, steroids), they are costly and have side effects.

“As a participant in the All of Us Research Program, I can share my health and lifestyle information through online surveys and by allowing them to access my electronic health records. My personal information goes into a secure database that the program established. My contribution to this program allows scientists and researchers to advance individualized prevention, treatment, and care for people of all backgrounds, including Hispanic women, such as myself.  

In the near future, I will provide my DNA to the All of Us Research program to help advance their research. By providing my DNA, I can learn about my genetics and learn about my risks for other health conditions.”

Joining the All of Us Research program can help increase scientific knowledge about psoriasis, and other diseases, and help find an individualized treatment that can help me and the other 7.5 million people suffering from this rare skin condition in the United States. Learn more about the program by visiting www.joinallofus.org/Together.

This article originally appeared on the National Hispanic Council on Aging website, http://www.nhcoa.org, and is part of an ongoing Senior Voice series by the Diverse Elders Coalition.