What about All of Us?
Posted on 08/23/2019 @ 01:47 PM
As part of its mission to advance the economic condition, educational attainment, political influence, housing, health and civil rights of the Hispanic population of the United States, the League of United Latin American Citizens (LULAC) has become partners with the All of Us Research Program to promote better health conditions for the Hispanic community. LULAC realizes that our health care system is flawed and still implements a “one-size-fits-all” approach that has not worked for the Hispanic/Latinx community for decades.
The National Institutes of Health launched the All of Us Research Program in May 2018 with the goal of gathering health data from one million or more people living in the United States to accelerate research and improve health. The program takes into account everyone’s differences, such as our lifestyle and the environment we live in, to help researchers uncover ways of delivering precision medicine, or individualized prevention, treatment, and care.
While the Latinx community makes up more than 18% of the U.S. population, we only account for roughly 1% of clinical trial participants nationwide. As a result, the medical treatment our community receives is not tailored to our specific needs. One very important thing to understand about medicine is that treatments and prevention strategies are based on research. If the Latinx community isn’t adequately represented in that research, we won’t have treatments designed with our unique health needs in mind.
One of the most important features of the All of Us Research Program is its emphasis on establishing a diverse group of participants. The program’s goal is to have 75% of its participants come from communities that have been historically underrepresented in biomedical research. LULAC encourages participation in the program because it provides the opportunity to help fight disease and improve the health of future generations, tackling some of the health disparities that plague our communities.
LULAC knows that members of our community who are considering participating may also have very valid concerns about sharing their personal health data. But the program’s approach to privacy and security has been developed by experts with input from a wide range of community partners. The program understands the importance of protecting its participants’ personal information and health data and is taking great measures to do so. The data is encrypted so names and other direct identifiers are removed and replaced with a code. All of Us limits and keeps track of who sees the information and has Certificates of Confidentiality from the U.S. government to help the program fight legal demands, such as court orders, to give out information that could identify participants.
Only approved researchers will be allowed to see data from individual participants. They will be required to register and verify their identity. Each researcher’s name, affiliation, and research purpose will be listed publicly. These researchers must agree to a code of ethics before accessing the data.
To participate, you must be 18 years or older and live in the United States. The program wants people from different backgrounds, geographies, ages, and genders. Participants will not receive any type of treatment; thus, they do not need to have health insurance to participate. To be a participant you do not need to be a U.S. citizen or permanent resident and the program will not ask you about your residency or citizenship status at any time.
From the onset of the program, participants have had full control over how much information they want to offer and can opt out of the program at any time. If you decide to participate, you may also be invited to do other activities, but they will not be required. The All of Us Research Program is available in English and Spanish.
LULAC is one of the 30 plus well-known, trusted and respected national community and provider organizations partnering with the program to raise awareness about the importance of participation from our community. It’ll take all of us to change the future of medicine and eliminate the health inequality that exists today in our country. The All of Us Research Program is an opportunity to ensure that the Hispanic community is included in research studies that can lead to new understanding and new treatments. Currently, more than 180,000 volunteers have joined as full participants, will you be next?