A clinic that is part of Essentia Health St. Joseph's Medical Center in Brainerd, Minnesota, in July hosted workers with All of Us, a program led by the National Institutes of Health to build one of the most diverse health databases in history.
The workers met with potential participants in the research program that is aiming to enroll more than 1 million people. So far, the program has more than 685,000 participants nationally. Essentia, St. Joseph's parent system, has helped sign up more than 4,000.
People who sign up are asked to share various kinds of information about themselves over time. They may get an in-person appointment, where research staff takes basic physical measurements, does a blood draw, and collects urine and saliva samples. If a participant agrees, researchers then perform full genetic sequencing on the samples through genotyping and whole genome sequencing. Participants get to see genetic results, such as genetic ancestry and health-related DNA traits. They also learn if they may be more sensitive to certain medications.
The samples collected are sent to the biobank at the Mayo Clinic in Rochester, Minnesota, part of their collection of biospecimens used for research.
All of Us began enrolling participants in 2017. Essentia Health joined the effort in 2018. "Participants want to join to learn more about themselves, but also help the future generations, if you will, to learn more within health research," said Krystal Klicka, a research and evaluation specialist with Essentia Health.
Reaching underrepresented groups
All of Us aims to include people who historically have been underrepresented in health research, including racial and ethnic minorities, sexual and gender minorities, and rural residents. St. Joseph's service area in and around Brainerd, 125 miles northwest of Minneapolis, is classified as rural, as is 84% of Essentia's overall footprint in Minnesota, North Dakota and Wisconsin. Essentia can connect All of Us with that population.
If residents aren't able to come in physically or don't have the technology to participate, researchers offer at-home saliva and measuring kits as well as iPads to sign in and answer questions online.
All of Us researchers follow up with occasional surveys, but participants can choose how much they would like to participate.
The program is for those 18 and up, and anyone can participate and sign up on their own, not just through their health system. "Otherwise, just a little bit of your time is really all you're giving to this program," said Klicka.
Essentia, which includes five Catholic hospitals, is part of the program through the Essentia Institute of Rural Health. Other hospitals may work with the All of Us program's communications and engagement partners, such as the American Academy of Family Physicians and the Black Greek Letter Consortium, to tell people about All of Us and sign them up.
Essentia has used different methods to help sign people up over the years, including community health events and inquiries through MyChart.
"Some people are hesitant, but once we explain it to them, most of them are happy to join," said Nathan Mukai, a research project coordinator for Essentia and communications lead for All of Us. "We have many participants that have been really eager to join in and contribute."
The program is free for participants. The information collected for research is kept confidential and secure and is not tied back to a particular person's name or address, according to the National Institutes of Health. Patients can choose not to receive certain information. They also get to decide whether to discuss any findings with their doctor.
The National Institutes of Health says more than 4,000 projects in the works now are using data from the program, and group information is available in a public database. The agency, part of the Department of Health and Human Services, says researchers have used All of Us data to find 118 previously unknown genetic variants that could cause health problems; link birthplace to cancer risk in Hispanic communities; and learn that lesbian, gay and bisexual cancer survivors reported a lower mental and social quality of life than heterosexual cancer survivors.
"Being able to learn just from our communities and other communities, it can definitely improve the health within our community, which trickles down to our health care system," said Klicka.