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Arab American Inclusion in Medical Research is Vital

posted on: May 13, 2018

SOURCE: PRESS & GUIDE

BY: FARAH ERZOUKI

For years, members of the Middle Eastern and North African communities in the United States have been underrepresented in medical research and other data collection, like the U.S. census.

By not being properly accounted for, individuals in these communities are not properly considered in the formation of policy and community health plans. This results in members of our community receiving medical treatment not specifically tailored to our needs.

As the largest Arab American nonprofit in the United States, the Arab Community Center for Economic and Social Services (ACCESS) is seeking to inspire change on this front in order to ensure people of Arab descent receive the public support and equal treatment they need and deserve.

ACCESS is delighted to join a national effort led by the National Institutes of Health (NIH) as they implement the All of Us Research Program, which officially launched across the U.S. on May 6. This initiative focuses on advancing precision medicine by engaging one million or more people living in the United States in the research process.

NIH recognizes that a “one size fits all” approach does not serve the needs of each and every unique individual’s health care situation. Precision medicine implements a holistic approach to assessing and improving health by gathering data on many aspects of an individual’s life, from their biology and health behaviors to their environment, in order to capture specific differences and paint a full picture with the ultimate goal of more effective disease prevention and treatment strategies.

All of Us will involve diverse national populations, including those from geographic regions and communities historically underrepresented in biomedical research. Such populations include low income and rural communities, along with racial and ethnic minorities, including the Middle Eastern and North African (MENA) civilians living in the United States.

ACCESS is proud to join the research initiative as a community engagement partner, along with 29 other community and health provider organizations around the country.

“It’s been essential for us — from the very start — to have diverse voices at the table, weighing in on the best ways to engage and retain diverse communities in this program,” said Dr. Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program. “These organizations will help us take things to the next level. They bring a wealth of experience and deep connections to their communities. It’s a privilege to welcome them to our network.”

ACCESS understands firsthand the barriers that exist in gathering and synthesizing data from the populations we serve, especially given that Arab Americans do not have a separate racial/ethnic category on the census. The lack of systemized data on our populations makes it difficult to assess and respond to the needs of the community, and limits the extent to which we are able to engage in evidence-based programming.

This is why ACCESS is all the more excited to be joining this initiative. The All of Us Research Program will include a MENA category for participants and will be one of the largest data collection efforts in the history of the United States to do so, bringing us one step closer to understanding the complex and dynamic needs of our community.

“As a health and human services agency, we have faced many unique challenges in our programming and advocacy due to the absence of an MENA category on national data collection efforts,” said Mona Makki, director of the ACCESS Community Health and Research Center. “We are eager to work with NIH on this program that has incorporated our perspectives, insights and the needs of the Arab American community by making the creation of such a category possible in the national launch of the program.”

However, we can’t make this partnership a true success without the full support and participation from individuals across our community. We’re calling on all Arab Americans to join us in participating in this revolutionary health research program, so we can better understand the most pressing medical problems our communities face and devise new and innovative strategies to solve them.

To learn more about the research initiative and sign up for updates, visit joinallofus.org.

Farah Erzouki is the public health coordinator for ACCESS Community Health and Research Center in Dearborn.