Why the U.S. is terrible at collecting Indigenous data
Abigail Echo-Hawk discusses the state of Indigenous public health.
Indigenous peoples in the United States sorely need health data. Yet health-care centers and public health institutions regularly overlook Native Americans, Alaskan Natives and other Indigenous peoples when collecting data and conducting research — a problem compounded by the coronavirus pandemic.
Without data, public health systems can’t identify populations at risk or monitor the effectiveness of programs. To improve Indigenous health inequities, United States needs to partner with tribal health departments, collecting data that reveals the full scope of Indian Country’s health issues. The incoming Biden administration has pledged to tackle the problem. The Biden-Harris plan for tribal nations includes increasing Native health data collection and sharing health data, like COVID-19 data, from the Centers of Disease Control (CDC) and Department of Health and Human Services with tribal public health agencies.
Abigail Echo-Hawk (Pawnee) is the chief research officer for the Seattle Indian Health Board and director of the Urban Indigenous Health Institute, which creates health resources like data collection to serve Urban Indian Health organizations across the country. She’s also on the National Institute of Health’s Tribal Collaboration Working Group, assisting with the “All of Us” genetic project, which aims to study diseases through cataloguing and researching genetic samples. High Country News spoke with Echo-Hawk about Biden’s COVID-19 data plan, the racial misclassification of Indigenous peoples, tribal access to federal data and her concerns for Indian Country as a vaccine is rolled out. This interview has been edited and condensed for clarity.
High Country News: The Urban Indian Health Institute developed a “Best Practices for American Indian and Alaskan Native data collection” fact sheet on collecting data on Indigenous peoples for public health departments. What are the nuances of collecting such data?
Abigail Echo-Hawk: When we look at the data on American Indians and Alaska Natives, we are able to see that there is a substantial amount of data missing on the race and ethnicity of Indigenous peoples. So we put up that “Best Practices” document, drawing on all of the work of many other scholars. We also make recommendations based on the gaps in information that my team and I have come across as we have tried to get the most up-to-date information to tribal leadership, to urban Indian leadership and to policymakers. This is so tribes can make policy-driven decisions on allocation of resources, interventions and programming.
The main nuance of Indigenous data is recognizing that, right now, the data simply isn’t being collected, or it’s being collected in a manner that still effectively excludes us — or we’re being racially misclassified. So what we broke down in the “Best Practices” document is the way data effectively “invisibilized” us.
It doesn’t make any sense. However, it’s become standard data-collection practice.
HCN: How common is racially misclassifying an Indigenous person?
AEH: It is unfortunately all too common. In fact, a 2005 study of Indian Health Service hospitals and clinics in the Pacific Northwest looked at patient deaths by racial classification data and linked tribal registry death certificates. It found that 17% of American Indian and Alaskan Native deaths were misclassified, with many input as “White.” This resulted in a significant undercount of deaths. It happens all the time. A lot of it has to do with non-people of color, predominantly white people, feeling uncomfortable about asking about race and ethnicity.
By not collecting this information and racially misclassifying data, you’re making Native people and other people of color absolutely invisible.
By not collecting this information and racially misclassifying data, you’re making Native people and other people of color absolutely invisible.
And with COVID-19 right now, people are going to hospitals for emergencies, and their relatives are not being able to come into the hospital systems to help racially identify them. How do we know that when our people are inputted into the hospital systems during the pandemic, they are actually being correctly classified? We probably won’t know for another year or two, when we go back and do the research.
HCN: Are there any comprehensive data on COVID-19 cases and deaths among urban Indigenous peoples?
AEH: No. Right now, all of that data flowing from urban Indian populations are being reported predominantly to the county public health departments, which report data to the states, and the states report to the Center for Disease Control. All the while, data on Indigenous people are not being reported in a standardized way across every county or state, and nothing is cohesive when it gets to the CDC.
As a tribal public health authority, the Urban Indian Health Institute, one of 12 tribal epidemiology centers, we have a legal right through the 2010 Affordable Healthcare Act — I say legal rights through treaty law — that gives us access to federal data. However, the CDC originally would not give it to me. They cited privacy concerns and the fact that they're not allowed to release this kind of information to researchers. But my answer to them is: I’m not a researcher. We are a tribal public health authority. So we actually had to work with members of Congress, who began to push the CDC. After several congressional hearings on this issue, we finally got a sliver of the data.
Right now, the Urban Indian Health Institute has access to the CDC data that looks at the urban Indian population nationwide and epidemiological surveillance of the urban Indian health programs. But what we found is with this sliver of data, because the way that the states are reporting the information to the CDC, that there’s very little there shared on American Indian and Alaskan Natives. They’re not doing a good job in reporting race and ethnicity. And as a result, it’s very difficult as to find any data on our urban Indian populations.
HCN: The incoming Biden-Harris administration’s Indian Country plan includes transparency of federal COVID-19 data for tribes, increasing public health data collection and greater sharing of this data. What do they need to do to accomplish this?
AEH: What they need to do is start instituting more accountability for the actual gathering of this data. I believe a lot of the Biden-Harris platform is based off work and the advocacy that we have been doing in regard to getting access to the data from the CDC and off the struggles of many tribes. That accountability has not been there.
They need to put into key leadership positions those who understand what it's going to take to halt this pandemic in our country and what it means to respect tribal sovereignty and tribal public health authorities. The incoming administration has the opportunity to create policies that ensure this flow of information to tribal communities and tribal public health authorities, like the Urban Indian Health Institute.
HCN: The Navajo Nation and White Mountain Apache Tribe both have built really robust contact tracing teams and a public health workforce and have partnered with a variety of institutions like John Hopkins, state universities and Indian Health Service to surveil COVID-19. Do you see this these kinds of partnerships as a good model?
We have to look at and recognize that each individual community is going to do something a little bit different, because everybody’s environment is different.
AEH: Yeah, for those individual tribes — I’ve been watching that really closely — that is absolutely fantastic. I strongly believe that county, state and federal public health entities can learn from trusting individual tribal communities, urban Indian organizations and their public health entities on how best to address COVID at the community level. Those are the strong partnerships that need to exist, and they need to be built on trust. There needs to be relationships on, and there needs to be in an agreement on how things are done and how information is reported back to the tribe.
But not every tribe is going to have that same situation. Some tribes exist in states and counties where there’s a lot of outright racism directed towards them. The same goes for urban Indian communities nationwide. And so, we have to look at and recognize that each individual community is going to do something a little bit different, because everybody’s environment is different.
HCN: What do tribes need to do to prepare for the COVID-19 vaccine rollout?
AEH: It is going to be very important for tribal communities and their federal and state and Indian Health Service partners to communicate the risks and the benefits of a COVID-19 vaccine when one does emerge. We’re looking at December as a possibility of the approval of a first COVID vaccine. We need to meet up and demand of our federal, state and county partners that tribal voices are at the table when decisions are being made on how this vaccine is going to be prioritized and allocated. I’m worried about what this vaccine rollout is going to look like. How are they making decisions on the allocation in regard to the data when the data is so bad?
Kalen Goodluck is an editorial fellow at High Country News. Email him at [email protected] or submit a letter to the editor.
