For 33 years, the NHLBI’s Strong Heart Study has focused on learning why American Indians have one of the highest heart disease rates in the nation—almost double that of the general population. And during that time, it has made important discoveries – confirming, for example, that risk factors like diabetes, high blood pressure, and elevated cholesterol have been driving the alarming numbers.
But when the COVID-19 pandemic hit, Strong Heart Study staff took on a new and unexpected role: They helped the American Indian communities fight COVID-19.
For months now, the Study staff—many of whom are American Indian—have volunteered their time and skills to distribute masks, hand out educational materials, and more recently, administer COVID-19 vaccines. Their focus has been on preventing the spread of the virus at the study’s three main field centers in Arizona, Oklahoma, and the Dakotas, where many study participants live. Each Center faces different challenges.
For those involved in Strong Heart – the largest and longest study of heart disease among American Indians – the change made sense.
“The Strong Heart Study already had a long-term partnership with tribal communities that focused on conducting research, disseminating findings, and organizing community engagement activities,” said Mona Puggal, M.P.H., NHLBI’s program officer for the study. “The field centers pivoted during the pandemic by using the study’s existing resources and expertise to collaborate with the communities on these public health efforts.” The staff extended these outreach efforts to all the surrounding tribal communities, not just to the Strong Heart Study participants, she added.
Enhancing communication in Arizona
The Arizona Strong Heart Center was one of the first field centers to be hard-hit by COVID-19, said Cynthia West, director of the center. The Arizona Center is home to many reservations, which tend to have densely packed households where viruses can quickly spread.
“When the states shut down in March 2020, the reservations shut down immediately,” West said. “The tribes shut down the casinos, and the tribal police shut down access to roads leading to the tribal communities. They didn’t really allow people going out or coming in. Our Interaction with tribes was gone as an option.”
In response, the Arizona Field Center developed a COVID-19 outreach strategy that was largely driven by phone, mail, and the Internet. Staff began calling the study’s participants in Arizona and offering resources that could be delivered to their homes, such as medications and groceries, particularly for the tribal elders. They used mail and social media to distribute COVID-19 resources, including information about social distancing and guidelines on the use of personal protective equipment (PPE) such as gloves and face masks.
For those who lacked access to smart phones and Wi-Fi—which includes many households on the reservations—Strong Heart staff made door-to-door house visits, often decked out in full PPE, to see how families were doing. “We had to do that from a distance because we weren’t allowed in,” West said. “And we got pretty good at it.”
Since shutdowns have been lifted, the Arizona Center has focused its COVID outreach efforts on brainstorming with tribal health departments on ways to get younger tribal members vaccinated.
Building back communities in the Dakotas
Marcia O’Leary, R.N., the director of the Strong Heart field center in the Dakotas, witnessed firsthand how COVID has impacted the communities in her region. The Dakotas Center covers North and South Dakota. Many tribal members there live on reservations, which often face financial challenges in addition to limitations in accessing fresh and healthful food choices.
“This has been a difficult time for the tribal communities here,” said O’Leary, who has been with the program since 1992 and lives on the Cheyenne River Reservation. “There’s always been tremendous pride in being a tribal nation, and it offers a great deal of strength to the people here. But COVID has interrupted that sense of community.”
Tribal members who had once attended large ceremonies and events could no longer gather. People became isolated. “That’s devastating to a community-based culture where people gather strength from these relationships. There’s a lot of loneliness,” O’Leary said.
The Dakotas Center addressed some of these challenges by working with tribal partners to distribute radios, masks, and food vouchers to the community. Radios are an important means of getting information to people on the reservations, as many homes lack access to the Internet. And because tribal nations operate their own radio stations, news about events and activities going on in the community can get out fast. O’Leary said the study staffers were able to take advantage of that.
“Strong Heart has figured out how to promote good health practices during isolation, whether it’s physical, behavioral, or psychosocial,” she said. “And this has allowed the communities here to emerge stronger.”
Masking up and getting vaccinated in Oklahoma
At the Oklahoma Strong Heart Center, tribal members reside on the non-reservation land located in the southwest part of the state, which includes both urban and rural communities. Staff members there organized a face mask distribution campaign. They designed 900 special masks with the Strong Heart logo on one side and American Indian art on the other.
Staff also partnered with local tribes to host two drive-through events. At the first, which happened in the city of Anadarko in collaboration with the Wichita and Affiliated Tribes, study staffers distributed face masks at a COVID-19 vaccination drive. The second event took place at the Comanche Nation Tribal Complex. Organizers announced the events on the Strong Heart Study Facebook page and on the social media platforms of the partner tribes.
“These two drive-through events were hugely successful. People drove long distances for the masks,” said Tauqeer Ali, Ph.D., M.P.H., principal investigator of the Oklahoma Center. “American Indian tribes have been very pro-active in the fight against COVID-19 by implementing preventive measures early during this pandemic, such as organizing COVID-19 vaccination drives; distributing face masks and hand sanitizers; and making public health announcements to emphasize the importance of wearing masks and social distancing,” added Ali, who also is a professor of research in the Department of Biostatistics and Epidemiology at the University of Oklahoma Health Sciences Center in Oklahoma City. Ali has been with the Strong Heart program since its early days.
In addition to the drive-through events, the Oklahoma Strong Heart Study Center also worked with the participating tribes’ elder nutrition programs, which provide free home-delivered meals and face masks to the tribal elders. Strong Heart Study staff members have also been calling study participants to check on them and to tell them about COVID-19-related services being offered by the local tribes and community members.
Looking toward a healthier future
Despite the challenges brought on by the pandemic, Strong Heart Study staff continue to push forward with a sense of urgency, its leaders said. It recently partnered with the NHLBI-funded Collaborative Cohort of Cohorts for COVID-19 Research (C4R), an observational study of more than 50,000 individuals nationwide to determine factors that predict disease severity and long-term health impacts of COVID-19. Heart disease, which is prevalent in the Strong Heart population, is a known risk factor for severe COVID.
Participants in C4R, who were enrolled from 14 long-term cohort studies, range in age from young adulthood to elderly and reflect the racial/ethnic, socioeconomic, and geographic diversity of the United States. The Strong Heart Study represents the only American Indian group in this new study. The C4R study is ongoing and final results are not available. “COVID has changed everything – how we collect data, how people live, the stressors in our life, how we go to the doctor,” said Strong Heart’s Marcia O’Leary. “We don’t know exactly how this will play out as far as how COVID impacts cardiovascular disease in this population in the long-term. But hopefully we can get ahead of it. We’re just on the brink of really understanding it.”
O’Leary said she’s optimistic that tribal members will prevail. “Nobody’s more resilient or accustomed to having to adjust and rebound than our American Indian partners,” she said.