Aleen Warren didn’t plan on becoming part of a national medical research program when she stepped out of her haircut appointment on Tuesday, but she had the time and was excited to do it.
“I just felt kind of excited that I happened by on a day when I had the time to actually participate and can be a part of something that will stand to help lots and lots of people down the road,” Warren said.
The “something” Warren took part in was “All of Us,” a massive National Institutes of Health data collection effort that aims to fuel medical research.
“All of Us” clinicians will be conducting surveys, collecting medical records and taking blood and urine samples on Washington State University’s Health Sciences campus in Spokane through Friday.
Warren, a foot care nurse, said she was immediately interested when she learned about the program. As a nurse, she said research like this could help providers individualize care for patients in the future.
“We need a different approach for caring for people,” she said.
The “All of Us” program stems from an initiative from President Barack Obama’s administration that aims to advance precision medicine, which seeks to identify unique factors that influence an individual’s health, including genetics, environment and lifestyle. Survey questions focus not just on health habits, like exercise or smoking, but also on race, origin, sex and gender. “All of Us” is an effort to build a database of 1 million Americans to be used for medical research, with a focus on people not traditionally included in health care research.
Francisco Huizar, field director for the program’s mobile initiative, known as “All of Us” Journey, says the aim is to push a specialized and individualized approach for all of health care and medicine.
Anyone interested in participating in “All of Us” can sign up online or visit the mobile unit, but so far only 300 Washingtonians have signed up.
Huizar hopes the next few days in Spokane will boost those numbers.
Nationally, about 230,000 people have participated in the program, after about a year of implementation.
Nonwhite Americans are significantly underrepresented in health care research, and part of the “All of Us” program is working to change that by partnering with community organizations to add a diverse and representative group of Americans to the “All of Us” database.
The National Alliance for Hispanic Health partnered with “All of Us” to get the mobile unit to Spokane. Adolph Falcón, the alliance’s executive vice president, said his organization partnered with NIH on the initiative because the country’s Hispanic population is usually only represented in single-digit percentages, if it’s represented at all, in medical research, despite 18% of the U.S. population identifying as Hispanic, according to census data.
“Hispanics are far, far underrepresented in databases, and in particular genomewide associated studies, and that’s really of concern to us because that’s what driving all future health discovery,” he said. “And the future of health is really going to be tailored to the individuals, and if Hispanics aren’t a part of those research studies now, the cures won’t reflect the needs of Hispanic communities and won’t be tailored to the needs of Hispanic communities.”
The same rings true of other minority groups throughout the country. Huizar points to one of the statistics painted inside the mobile unit: “Fewer than 10% of the U.S. population participate in clinical trials.”
People who sign up for the program sign consent forms that allow researchers to use their data, but personally identifying information will be removed before it is made available to researchers. Information shared with NIH is protected through certificates of confidentiality. NIH research is protected under these certificates, said Alyssa Cotler, director of communications for “All of Us.”
“That means that even if another government agency or law enforcement agency or court order asks for our data, we don’t give it to them,” she said.
The program asks participants to share a lot of personal health data and give blood and urine samples for genetic and DNA research.
“One of the things that sort of sets this research program apart from other genome sequencing research is that we do collect information that you wouldn’t necessarily find in someone’s DNA,” Cotler said.
In the future, researchers will submit proposals to NIH to access the “All of Us” database, although a lot of the collected data is already public. NIH is working to create a code of conduct that researchers would have to agree to in order to access the data. Once the processes and code of conduct is in place, NIH will open up the database to researchers who submit proposals. When a person signs up with “All of Us,” they have the option to be contacted in the future to see if they want to participate in further research.
“What we imagine will happen in the future is there could be a researcher that is looking at an intervention study, and they are interested in reaching people with a certain health condition or meet certain criteria and would invite these sets of folks from our program to be involved in their research separately,” Cotler said, noting that NIH is still working on how confidentiality would be protected in this process.
For now, the “All of Us” program continues to build its database online and in person, through the mobile unit.
The “All of Us” enrollment center is open from 10 a.m. to 4 p.m. through Friday at the corner of Spokane Falls Boulevard and Front Avenue on the WSU Health Sciences Spokane campus.
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