Have you ever been put on a treatment that just didn’t work for you?
Most people like to think that our doctors will always know what treatment will work best. It turns out that all the things that make people different — DNA, age, gender, race, living conditions — can mean “trial and error” to find a treatment that works for individuals.
The problem isn’t because health care providers are overlooking data and research about what treatments might work best for you. Often, the knowledge simply doesn’t exist. That’s because many groups have been left out of research in the past. The result is less information about the health needs of women, Black, Hispanic, LGBTQ+ and Asian-American patients, and people with multiple conditions.
That can leave your health care provider making best guesses, based on what worked for other patients who may not share the factors that make you unique. Those differences can mean treatments come with extra side effects or might not work at all. For example, because of certain genes, a commonly prescribed blood thinner, clopidogrel, does not work in about 50% of people with Asian ancestry.
To learn why a treatment works better in one patient than another, scientists need data — lots of data. The National Institutes of Health’s All of Us Research Program is well on its way to fill that need by inviting one million people to help build one of the largest and most diverse medical databases in existence. Participants choose what types of data they contribute, and whether they would like to receive information about their DNA, free of charge.
“We know that ‘one-size-fits-all’ medicine fails too many people,” said Joshua Denny, M.D., M.S., Chief Executive Officer of the NIH program. “The more than 400,000 people who have already joined the program are making it possible for researchers to better solve many medical mysteries, diagnose faster, prevent better and treat more accurately.”
Protected by privacy and security safeguards, the data equips registered researchers with real-world information to study better ways to prevent, manage and treat disease, including common conditions like cancer, heart disease and diabetes. Andrea Ramirez, M.D., M.S., Senior Advisor to All of Us, is a practicing endocrinologist and has seen first-hand the challenges of managing patients with diabetes.
“There are so many factors that can impact what treatment will get the best results for a patient, including genetic variations,” says Ramirez. “All of Us goes beyond finding the DNA information and allows researchers to study diabetes therapy in relation to participants’ electronic health records, environment and lifestyle. That combination of data shared through All of Us changes the game and opens doors to answering questions more quickly.”
The participants who join the research program can help make sure scientists like Ramirez won’t be slowed down by the lack of data when they search for answers to the health issues that affect your family or your community.
To learn how you can become a participant and contribute to the effort to better understand how health needs differ from person to person, including your own, visit JoinAllofUs.org.