Good eating habits and healthy lifestyles are keys to maintaining our well-being. But our family history also plays a part in determining our long-term health.
At UnidosUS we work to improve Latinos’ health and well-being and promote equal access to affordable quality health care. We believe that every person has the right to be actively engaged in health and have a voice in their treatment options. That is why we have joined the All of Us Research Program, whose goal is to help researchers understand more precisely about why people get sick or stay healthy.
The All of Us Research Program is based on precision medicine. This approach for disease prevention and treatment takes into account a person’s lifestyle, environment, and family medical history.
The program—led by the National Institutes of Health—aims to do this by enrolling one million or more volunteers from all across America. Working with key partners, both nationally and locally, the hope is to use this information to better understand health and disease and finding cures.
The findings from All of Us may lead to new, more targeted treatments. Instead of working on one-size-fits-all solutions, medications could be made that specifically take into account the unique makeup from diverse populations for better treatment options.
SERVING THE COMMUNITY
UnidosUS Affiliates are the heart of our organization and serve communities directly. They know the concerns people have as they try to remain healthy amid all their responsibilities and challenges of daily life.
That’s why our Affiliates are playing an important role in getting the word out about this program. One of those Affiliates is San Ysidro Health Community Health Center (San Ysidro Health).
The nonprofit organization was started in August 1969 literally in a little house—called La Casita—by a group of mothers in San Diego County. They wanted to bring health services to the population of 7,000 mostly Mexican Americans who lived in the agricultural community.
When La Casita opened they saw about 40 patients per day two days a week with 4 volunteers. Today, San Ysidro Health cares for more than 95,000 patients in 15 clinics, and have a staff of more than 1,300.
“We are honored to be the only Federally Qualified Health Center on the west coast chosen to participate in the All of Us Research Program. Since our founding we have developed relationships and trust with our community, and these relationships have been the basis for our efforts to inform patients about the program and its benefits,” said Dr. Maria Carriedo-Ceniceros, Vice President and Chief Medical Officer.
Last summer San Ysidro ran initial phases of the All of Us Research Program in two of their clinics. They found that direct invitation was the best way to get the word out to their community, both in-person and via phone calls.
TAKING NOTE OF THE CHALLENGES
In a recent webinar, Fatima Munoz, Director of Research and Health Promotion at San Ysidro Health, talked about the challenges they faced in this initial rollout during a webinar UnidosUS hosted with a panel of experts.
WATCH: Munoz talks about San Ysidro Health’s role in the program (Spanish)
She mentioned that between 60 and 80% of the population they serve speaks only Spanish. They did not have enrollment materials in Spanish available until January, so they missed out on this important population. Munoz said they are now reaching out to this sector with the Spanish enrollment materials they’ve received as part of the All of Us Research Program.
By February 1, they invited 2,127 people, but just 171 completed the entire enrollment. Munoz mentioned that 1,524 people declined to participate. Of those, 1,102 people provided feedback on why they chose not to participate. Over 40% of those said they declined due to the time commitment. The program does ask that participants stay on for a period of years, since that’s the time it takes to get useful data.
But those who chose to participate have a clear goal in mind—they want to help their families and community. Of those who agreed to participate, some of the reasons they mentioned for wanting to enroll was the possibility of benefit to personal or family health (50 people) and helping the community (35). These results demonstrate the important role we have as community leaders and health advocates in educating diverse populations about the value add this program can have for our family and future generations.
A PROMISING START
Munoz said that some of the challenges they encountered was the fact that it’s a digital process, and they only had materials available in English. San Ysidro is currently working to contact patients who were interested in receiving information in Spanish.
Dr. Gregory Talavera, SYHealth Chief of Research and Health Promotion, professor at San Diego State University and Founder and Co-Director of the South Bay Latino Research Center, also participated in the webinar and stressed that this is a program, and not just a stand-alone research study.
Participants are told at every step what data the program collects, what lab analyses are done, what research is conducted, and how data gets returned, Talavera said.
WATCH: Talavera on the All of Us Research Program (Spanish)
And the program is ultimately about la salud del futuro—the future of our family’s health.
“You have the power to help your family down the line. You as an individual are not going to see immediate relief right now (in this program), but it’s for future generations. La salud futura. In the future, my children may have a better chance for survival for certain diseases” because of the knowledge gained in this program, said Dr. Donney John, Executive Director of NOVA ScriptsCentral and guest speaker for UnidosUS webinar
And this is just the beginning. The program will officially kick off its alpha stage this spring. You can find out more about the program here: https://www.joinallofus.org/. You can also see more about UnidosUS’s participation in the program here: http://allofus.unidosus.org/