LOS ANGELES (KABC) — A groundbreaking national health study is underway that could help generations to come.
The goal is to recruit one million Americans, and diversity is key. That’s why one local group is trying to make sure everyone is well represented.
A search for an identity
Like all college students, Daphna Patel of Artesia is on a mission to find herself.
“My family gets really confused that I’m pursuing geography because I’m always lost,” Patel said as she laughed.
It may be a running joke, but Patel has always been searching for where she fits in.
“So I am biracial, biracial South Indian, so I am Latina,” she said.
A shocking diagnosis she received 20 years ago made her feel even more out of place.
“At 15, I developed symptoms … symptoms were fatigue, blurry vision, numbness,” Patel recalled.
An MRI revealed it was multiple sclerosis. Patel sought the support of patients like her, but since doctors told her MS generally strikes adult white women, she felt isolated.
Yet somehow she knew the data was lacking.
“You can’t really buy into that. You have to do your own research,” Patel said.
Working toward a solution
Her research led her to Asians and Pacific Islanders with Disabilities of California or APIDC.
“Asians with disabilities are, in many respects, a double minority,” said APIDC Co-Founder Patricia Kinaga.
Part of APIDC’s mission is to break down service and cultural barriers.
So helping the National Institutes of Health recruit Asian American groups for a groundbreaking study called “All of Us” is a natural fit.
“Asian and Pacific Islanders have not traditionally been involved in many research studies,” Kinaga said.
Dr. Marc Goodman, the director of cancer prevention and genetics at Cedars-Sinai said homogenous medical advice based on studies done mainly on white populations is a disservice to everyone.
“Japanese Americans are more susceptible to diabetes than are whites,” he said. “This is really unprecedented and really a next step in trying to determine differences in disease on an individual basis.”
Also, did you know that certain Asian groups are more vulnerable to the effects of cigarettes? More evidence can help doctors order better tests.
“We might want to up lung cancer screening among certain racial ethnic groups that are more susceptible to tobacco smoke as an example,” Goodman said.
“When you think about the API population throughout the United States, we’re talking about over 20 countries, and many, many different types of languages, lifestyles,” Kinaga said.
With all that diversity, doctors said even a standard measure like body mass index can be misleading.
“A Filipino woman or a Chinese woman may have what’s considered to be a normal body weight, but she may have a lot of peripheral fat which could change her risk of disease,” Goodman said.
What does this study involve?
The study involves filling out a detailed questionnaire, sharing some electronic health records and possibly giving a blood and urine sample.
Because it’s an NIH study, your information will be kept safe and private.
“We have things called certificates of confidentiality, protection of health records,” said Goodman.
The goal is to follow you for 10 years. Your participation will help future generations receive precision medicine, but you get something out of this too.
“They will receive test results and they will receive an explanation of what the results mean,” said Goodman.
You may get nutrition and exercise advice and insight into your specific situation, and where you live impacts your health and that brings us back to geography.
“Because it’s the study of where and why, which is exactly what we’re speaking about: where and why,” Patel said.
Patel said the environment, economics, ethnicity all play a role, and having that information helps “All of Us.”
“It’s important to have this research. I think it protects us,” said Kinaga.