When Ambien was introduced to the market, the standard dose was a godsend for those needing a sleeping aid — unless you were a woman. Lipitor helped patients with high cholesterol — unless you were of Asian descent.
Better access to research data could have mitigated these issues, and that’s one of the reasons the All of Us Research Program was created.
The All of Us Research Program, funded by the National Institutes of Health (NIH), is a historic effort to gather data from more than 1 million volunteers living in the United States to advance research for population-specific treatments for disease.
After all, if women and diverse populations are not included in research studies then the results might not reflect them.
“We live in an era of precise medicine,” says Robert Winn, MD, associate vice chancellor for community-based practice at the University of Illinois at Chicago, director of the University of Illinois Cancer Center and a principal investigator for the All of Us program in Illinois. “One size does not fit all.”
All of Us is the “first time in history to get those who are typically under-represented in biomedical research — whether they are minorities, women or elderly — involved, so that we might be able to get the health and genomic information needed to better serve them and the country by way of new discoveries, new knowledge and new information,” Winn says.
The more data available, the better researchers can serve the needs of all patients. All of Us is part of the larger Precision Medicine Initiative, which seeks to use genomics and health information technology to develop tailored treatments for disease.
The goal is to enroll 1 million people nationwide, Winn says. The state of Illinois is hoping to enroll 150,000 through NorthShore University HealthSystem, Northwestern Medicine, Rush, University of Chicago Medicine and University of Illinois at Chicago, starting with beta testers this fall. National enrollment will begin in spring after the beta-testing phase is complete for all partners across the country.
The program’s biggest obstacle? Convincing those who are under-represented to trust the healthcare system.
Jeri Lacks Whye, granddaughter of the late Henrietta Lacks, admits it’s very hard for people of color to trust the system. Cells derived from her grandmother’s cancerous cervical tumor have been used extensively in scientific research and helped make possible some of the most important medical advances of the past 60 years, all without Lacks’ knowledge or consent. Commonly known as HeLa cells, they are the most widely used human cell lines in existence today.
Lacks Whye spoke at UI Health, prior to the kickoff for All of Us, about the importance of including a diverse population in research studies and how the medical system needs to increase trust in the research process.
That trust is important, because All of Us plans to collect medical records and diet and lifestyle information, along with blood and urine samples. The program is actively seeking people of color, women, the elderly and other underrepresented groups to participate.
Winn and his team at the University of Illinois Cancer Center are working to bridge that trust gap by involving the community through a program called the Patient Brigade, which consists of cancer survivors, caregivers and supporters who share their experiences — what works, what doesn’t and more — directly with researchers.
Diverse participation in research programs like All of Us is important, Winn says. “It would be a double whammy if minorities don’t participate or if women don’t participate,” he says.
Without research diversity, the gap of disparities in treatments can widen. “Participating in medical research benefits us all,” Lacks Whye says. “It gives us hope for the future.”
Winn agrees: “This is a project for all of us to benefit from.”
For information about All of Us, as well as enrollment updates, visit joinallofus.org or call 844-842-2855.
