An ‘asterisk population’: Poor data complicate maternal health research for Native women
Key takeaways:
- Federal and state data collection for American Indian or Alaska Native populations has been historically poor.
- Incomplete data hamper efforts to improve maternal and CV health for Indigenous women.
Editor’s Note: This is part two of a three-part Healio Exclusive series on maternal and cardiovascular outcomes among Indigenous women living in the United States. Part one can be viewed here. Part three can be viewed here.
American Indian and Alaska Native women have some of the highest rates of maternal death and morbidity in the United States, yet challenges with poor data collection continue to complicate efforts to improve health outcomes.
Despite growing recognition that Indigenous women are much more likely to enter pregnancy with suboptimal CV health, data on traditional and sex-specific risk factors among American Indian/Alaska Native pregnancy-capable people are limited. In an American Heart Association scientific statement published in May 2023, the authors noted that research on mental, physical, behavioral or social risk for CVD among American Indian and Alaska Native people — particularly among women of reproductive age — has been scarce and rarely conducted through a culturally relevant framework.
“Suboptimal CV health during pregnancy is also strongly associated with the development of future CVD,” the researchers wrote. “Hence, there is a critical need to track and characterize CV health from preconception and pregnancy to the postpartum period and to identify modifiable factors and intervention opportunities that can significantly improve pregnancy outcomes.”
‘We do not have all the data that we need’
Data collection is a key factor for any initiative that could narrow racial morbidity and mortality gaps; yet, researchers are not adequately collecting data for Native women, according to Healio | Cardiology Today Editorial Board Member Garima Sharma, MD, FAHA, director of women’s cardiovascular health and cardio-obstetrics at Inova Health System in Falls Church, Virginia, and adjunct associate professor of medicine at Johns Hopkins Medicine.
“American Indian and Alaska Native women have the second-highest pregnancy-related mortality in the U.S., after Black women. But to be honest with you, we do not even know if that is accurate,” Sharma said during an interview. “Many times, Native women are giving birth on reservations or in places where obstetrical care is sparse. We are relying on data that are not collected from regional centers. There are issues with data aggregation, but for all practical purposes, the rate of pregnancy-related mortality among these women is high.”
Sharma said any interventions designed to address health disparities among Native women should begin with efforts to collect accurate numbers.
“The CDC has only recently started to look at these Indigenous populations,” Sharma said. “Most of the population reported is American Indian; there is very little information on Alaska Native women, so we have to combine these groups. Disaggregation of the data in terms of CVD rates and CV health, considering population-specific, social-cultural physical environments, will inform what to do.”
There are 574 federally recognized American Indian and Alaska Native tribes across 34 states, according to 2021 data from the Bureau of Indian Affairs. Additionally, as many as 70% of people who identify as American Indian or Alaska Native live in urban areas and away from their home tribal community, reservation or recognized territorial lands.
In a review published in February 2022 in American Indian and Alaska Native Mental Health Research, researchers noted how these distinctions can have far-reaching implications for health research, as tribes are protective of the rights and data of their tribal members, but the extent of the protections of sovereignty for urban Indigenous people are still undefined.
“As it pertains to the maternal mortality crisis in communities of color, the Native American population is often considered an asterisk population,” Rachel M. Bond, MD, FACC, systems director of women’s heart health at Dignity Health in Arizona, told Healio. “This term is used to describe groups for whom data is insufficient or incomplete, often represented in statistical reports with an asterisk instead of specific numbers due to small sample sizes or lack of accurate data collection. As a result, we lack the comprehensive data necessary to fully understand the extent of the crisis.To address this, states are working to implement improved methods for collecting accurate statistics. With more reliable data, we can focus on research efforts to identify the underlying causes of these disparities and make the necessary changes we need.”
Repairing broken trust
The AHA statement authors highlighted that American Indian and Alaska Native people have experienced unethical research practices over generations, including forced sterilization and culturally insensitive studies. That long history of research misuse in Native communities complicates data collection today, according to Jason Deen, MD, FAAP, FAAC, founding director of the Center for Indigenous Health at University of Washington School of Medicine and pediatric cardiologist at Seattle Children’s. Deen, who also serves as a co-principal investigator of the Strong Heart Study, the largest epidemiologic study of CVD and its risk factors among Native American people, is working to make change through research partnerships.
“Efforts like the Strong Heart Study were a model for community-based participatory research before that was a term,” Deen told Healio. “We conduct community-facing research and focus on community empowerment. Successful Native research projects have reciprocity to them. Not only do we learn from our participants, but we take those lessons and make sure the communities have those data so they can use them for initiatives.”
Deen said Strong Heart investigators partner with 12 tribal communities to identify health needs and priority areas of importance to the communities, and then work to develop approaches to address those identified needs. The goals, Deen said, include promoting CV health and risk factor awareness; fostering partnerships with the community representatives, including tribal leaders; and offering training opportunities for researchers and health professionals in the tribal communities.
“Data collection is difficult, and to be successful, you have to focus on community empowerment and relationship building before you collect any data or samples,” Deen told Healio. “That does not follow an NIH timeline for research projects. It is what we at the Center for Indigenous Health talk about — that there are extra complexities, necessary complexities that must happen for these communities to feel empowered to participate in research.
“We have been ringing the bell at Strong Heart that Native women entering pregnancy with abnormal CV health raises the CV risk for their offspring,” Deen said. “That is a powerful statement. We can leverage this time to improve their health and improve their offspring’s health.”
Editor’s Note: Part three of this Healio Exclusive series will discuss strategies to partner with Native women and their communities to improve maternal and CV outcomes.
We want to hear from you:
Healio wants to hear from you: What data are needed to better inform care of Native American and Alaska Native women entering pregnancy? Share your thoughts with Healio by emailing the author at rschaffer@healio.com or posting on social media at @CardiologyToday on X (Twitter). We will contact you if we wish to publish any part of your story.
References:
- Arias E, et al. Vital Statistics Rapid Release. 2022;doi:10.15620/cdc:118999.
- Eberly LA, et al. JAMA Netw Open. 2023;doi:10.1001/jamanetworkopen.2023.34923.
- Sharma G, et al. Circ Cardiovasc Qual Outcomes. 2023;doi:10.1161/HCQ.0000000000000117.
- Strong Heart Study. Available at https://strongheartstudy.org/. Accessed Dec. 18, 2024.
For more information:
Rachel M. Bond, MD, FACC, can be reached at rachel.bond@commonspirit.org; X (Twitter): @DrRachelMBond.
Jason Deen, MD, FAAP, FAAC, can be reached at jason.deen@seattlechildrens.org; X (Twitter): @UWDeptMedicine.
Garima Sharma, MD, FAHA, can be reached at gsharma8@jhmi.edu; X (Twitter): @GarimaVSharmaMD.
Collapse
Healio Interviews