Data Strategies to Improve Health Outcomes for Indigenous Communities

ROBERT JOHNSON:
This is Public Health Review. I'm Robert Johnson.

On this episode: a call for data to improve the health and safety of American Indian and Alaska Native mothers and their babies.

ED EHLINGER:
This is the first time in 31 years of the Advisory Committee on Infant and Maternal Mortality that they actually focused on American Indian and Alaska Native outcomes.

JANELLE PALACIOS:
I believe our government should prioritize data collection, and we need that to happen now.

KATELYN STRASSER:
Data sharing in any context requires a level of trust. You must build partnerships and continue to show up for these people.

JOHNSON:
Welcome to Public Health Review, a podcast brought to you by the Association of State and Territorial Health Officials. With each episode, we explore what health departments are doing to tackle the most pressing public health issues facing our states and territories.

Today: why data is needed to improve outcomes for American Indian and Alaska Native mothers and their infants. Very little is known about this population. The data either isn't collected or it's hard to collect—whatever the reason, the result is devastating. These mothers and their children are dying at rates higher than rates for white mothers and babies.

Recently, the Federal Advisory Committee on infant and maternal mortality issued a groundbreaking report—the first ever to get into these concerns and issue recommendations that many hope will save lives. We have three people here today to get into the report and the recommendations.

Dr. Janelle Palacios helped write the report. She grew up on the Flathead Indian Reservation in western Montana. Her work includes research and policy advocacy. She's also a nurse midwife. Katelyn Strasser runs the Office of Child and Family Services in South Dakota. Her team is already working to implement many recommendations out of the report. They're along later.

But first, we hear from Dr. Ed Ehlinger. He's the former state health officer in Minnesota, and a former past president of ASTHO. Ehlinger, a pediatrician, also chaired the committee and helped write the report.

EHLINGER:
The committee really was looking at what are the issues that have not been adequately addressed over the last several years. And certainly a lot of work has been done on communities of color related to infant and maternal mortality, but the American Indian and Alaska Native population has never gotten a lot of priority, for several reasons.

One is they're a relatively small population, they're diffused throughout the country, they're non-state entities, they're sovereign nations—so they're almost treated as an asterisk, just because of their number and how they're distributed throughout the country. And so, we recognized though that their birth outcomes were not as good as they should be, in fact they match those of the African American community. And so, we wanted to focus some effort on that.

So for the last two years, we specifically focused on gathering information about this population, both from the research that was out there but also from expert testimony. And then we had a meeting on tribal land to really talk about that with the people themselves, getting first-person stories about the issues that they're facing both in urban settings and tribal settings.

JOHNSON:
What is it about this report that makes it groundbreaking in your view?

EHLINGER:
This is the first time in 31 years of the Advisory Committee on Infant and Maternal Mortality that they actually focused on American Indian and Alaska Native outcomes. That, by itself, was groundbreaking.

The second is that the committee had never met outside of Rockville, Maryland, in those 31 years, and certainly never on tribal land. So we worked to actually get our meeting on the land of the Shakopee, Mdewakanton, and Sioux, so that we could be in the community where people would feel safe coming and telling their stories. And that made all the difference in the world, because the committee all of a sudden saw the stories, heard the stories, saw the people and the passion that they brought in to change their view of how the data were analyzed. And that by itself was groundbreaking in its impact.

JOHNSON:
What are some of the challenges that were identified in the report?

EHLINGER:
How we determine race is sometimes problematic, and particularly for American Indians and Alaska Natives. They oftentimes have several races that are combined, and so when you just choose one you often undercount the American Indian community. So they're linked with other communities, so they're undercounted, and that really decreases the numbers that we can analyze and that really impacts how we can identify what the true issues are.

JOHNSON:
And the people we're talking about are not that easy to find, right?

EHLINGER:
Well, that's the other thing, is that they make up 1.6% of the population, but they're distributed throughout the United States so there's no real concentration of populations. Also, over half of the American Indians and Alaska Natives don't live on reservation, so they're in the broader community—they're in urban areas, and they're in rural communities—so they often don't get counted. They blend into the background. And so that's why I say it's often they're kind of viewed as an asterisk—you know, they're out there somewhere, but we don't have enough to count them.

The other is that they're sovereign nations, and most of our work in public health goes from federal to state to local, and so the sovereign nations don't fit into that paradigm. So they're often overlooked, because they have their own approach to governing and they have their own approach in their relationship to the federal government and state government.

JOHNSON:
How do the recommendations help reshape existing narratives?

EHLINGER:
Our report really helped to identify the fact that context makes a difference. The physical context where people live makes a huge difference; we know that from all of our work on social determinants of health, that living conditions impact health. But we also know that the context and the history of genocide and data erasure and historical trauma that has plagued the American Indian and Alaska Natives for 500 years has really impacted those living conditions. And it impacts all of the other factors that go on that impact maternal and infant mortality.

What happens on the reservations, where they have been starved of resources—financial resources, environmental resources, economic resources; or in cities where they live, where they have poor housing and access to care; Indian Health Service, which is underfunded, and poorly administrated. All that context impacts the health outcomes. And so the narrative that we heard from the stories of the women who gave birth, who treat pregnant women on reservations and in urban communities, is that this context makes it difficult for American Indians and Alaska Natives to be healthy and have positive birth outcomes.

JOHNSON:
Why is having better data so important when it comes to these narratives?

EHLINGER:
Our whole public health system is built on data. And so if you count it, you can measure it, and then you can evaluate the impact of your programs. And if you don't have adequate data, it's difficult to target and set priorities for services and policies.

The other thing about data is that we oftentimes think of data as purely the numbers that we collect from birth certificates and death certificates and service delivery; but we don't think of the stories that people tell, the lived experience, as data that also counts. And this report really highlighted the fact that those stories are just as important pieces of data as the numbers on the birth certificate are.

JOHNSON:
Share with us, if you can now, more detail about each of the recommendations.

EHLINGER:
I think it's important that we had three basic recommendations. One is to make American Indians and Alaska Natives a priority. They have not been a priority in our country, and we'd make them a priority by really focusing on data, getting the right data collection, identifying race and ethnicity in ways that identifies tribal identities and American Indians as a population. And we also raise their priority by having them as part of the structure: have them on advisory committees, that we have them at the table when decisions are made, and developing workforce.

The second piece after the priority is we wanted to make sure that their social conditions were addressed with a Health in All Policies approach, and that the direct care that they received through the Indian Health Service would be improved. So we had some recommendations about how to improve the Indian Health Service, and how to get all federal agencies to work collectively to address those social conditions that impact health.

And then the third set of recommendations was about factors that really impacted American Indians and Alaska Natives more than other populations, like missing and murdered Indigenous women and girls, sudden infant death syndrome, incarceration, intimate partner violence—all of these factors that because of the social conditions impact American Indians and Alaska Natives more than other populations, generally.

JOHNSON:
We hear time and time again that you can't really get anything done if the people in the AI/AN communities don't trust you. So the question is: how can your colleagues begin to build that trust if they don't feel they have it already?

EHLINGER:
Your statement about trust is really important. And that's another reason why we don't have good data about American Indian and Alaska Natives because they oftentimes don't trust giving that information to people outside of their community. They don't know what's going to happen with it, so we have to be respectful of the data. We have to develop the whole idea of data sovereignty, that the collection of data is treated with respect and is managed by the tribal entities, not necessarily by the state entities. So it's a little different paradigm of how we look at the use of data.

The American Indian and Alaska Native data sovereignty is is a huge issue, but also developing relationships, certainly, just from my personal experience. Meeting regularly with the tribal health directors took a while to set up. The fact that they would know enough about me to trust me with certain kinds of things—I don't think we ever gained total trust, but there was a process in building relationships. So meeting on a regular basis and getting their input before you make any decision that reflects or impacts the tribal communities, that helps to build that trust that's so necessary.

JOHNSON:
How important is this report to the goal of saving lives?

EHLINGER:
As I said at the beginning, this was the first report done on American Indian and Alaska Native birth outcomes that the Advisory Committee on Infant Mortality had ever done. That is important, it has raised the issue.

It has also raised the issue that the context and historical factors are important in assessing the needs of this community. It was important in that it helped develop some relationship with tribal communities across the country where they recognize that if the federal government is willing to go to tribal land to hear those stories, they're making an effort to really listen.

Also, the fact that members of the federal administration are from American Indian and Alaska Native backgrounds is also starting to change the narrative about, "We're being represented at the table and our issues are being raised." And also the fact that we only have one member of our committee who was Indigenous, but the fact that she was there at the table made a huge difference in this report. It changed how we interpreted the data, changed how we presented the data, and how we linked to these data to what was going on in tribal communities throughout the country.

JOHNSON:
What would you say to your colleagues right now that might move them to pick up this document and read it and do something with it?

EHLINGER:
I got some pushback about, "Why are you focusing on American Indian and Alaska Natives? They're a relatively small population."

But I go back to the beginning of the Maternal and Child Health Program in this country, back to 1912, and Julia Lathrop was the first director of the Children's Health Bureau. And she said, "The greatest service to the health and education of all children has been gained through efforts to aid those who are disadvantaged. Thus, all service to the disadvantaged children to the community also serves to aid in laying the foundations for the best service to all the children of the Commonwealth."

That means that if you meet the needs of American Indian and Alaska Natives, everybody's going to benefit. They are probably the most disadvantaged population in our society, relative to birth outcomes. If we can meet their needs, we will certainly impact the needs of Hispanic populations, African American populations, immigrant populations, and certainly the white population. That's why it was so important to really focus on the needs of American Indians and Alaska Natives.

JOHNSON:
Dr. Janelle Palacios is direct when talking about this topic: she wants more data, and she wants it now.

PALACIOS:
Well, the Making Amends report is just a very beginning step. It's a needed step, but it's the very beginning. It's still in its infancy of what we really need to do. So there is much more progress to be made at this point in time.

The big recommendation included in our report was that we have standardized data that's collected on this population of American Indian and Alaska Native population—but also in our country in general—and that states and territories and federal agencies need to be clear on collecting this data. And that we can no longer just continue to call this the asterisk nation, or the asterisk population, or the something else nation.

JOHNSON:
Thinking about this issue and how to make an impact, you are laser focused on the data.

PALACIOS:
Data is really important. We have to know where we're starting. And we have to know that, where there are differences, we need to understand why there are differences. I would expect that highly resourced areas and communities might have slightly better outcomes than those communities that are poorly resourced. And this is where the social determinants of geographical, political, environmental health come into play. It's understanding all of that that helps shape outcomes.

And so we do need data. That's essential. But we also need our government and our states' governments to realize that this is important. I work on other projects, and I have come to learn that some Title V agencies and states are limited in their capacity to do some type of data collection. For example, in some states, you cannot say the word "racism" in any kind of data collection work. In some states, the people who are working on what would be racism or bias have to almost speak in code; they have to use another language to kind of approximate what we're really trying to get at.

So we have to really address the system that is in place that we've inherited, that we're operating out of now, that is looking at data, how we collect data. And it will continue to be difficult to collect data if you continue to have mistrust amongst populations and communities.

JOHNSON:
We know that relationships are vital to success in this area, but how can agencies build that kind of trust in these communities?

PALACIOS:
This is a tough question to answer because it requires prolonged engagement, prolonged visibility, and consistent showing up. And always being able to make the right decision that is going to be beneficial for the community, not necessarily for the state.

So, it takes time. And when you have people working in state agencies, people tend to move on in their state agency. So you might have someone there for a few years, who might have started relationships, who might be working with the tribal community or a tribal advisory board or a consortium in the state of tribal community leaders. But then people move on and move into different positions or leave the state. So when you have a well-known, recognized person that shows up from the state within a community and then that person leaves, that can set back that relationship.

The other issue is that on the tribal side, it's difficult sometimes working with tribal government boards because those also change every two to four years—they can change because we have elections every two to four years. So you might have half of the board who are in the tribal government leaving in two years. And sometimes these people come back and they have longevity in the community and that's great, but there's always this constant shifting of who the players are. So it relies upon the state trying to build friendships and partnership and trust with people in the community that are likely not going to be changing or leaving. And those people might be, capacity-wise, tapped out. It might be difficult.

So then, I suggest sometimes state programs partnering with universities, or tribal colleges and universities, and try to work on an alliance in that realm. Because you're trying to look for consistency—who are going to be the people that are going to be there for the next 10 to 20 years?

JOHNSON:
To those already doing this work across the country and in the territories, how does the committee's report help them?

PALACIOS:
So maybe this report is almost like a stamp of a certification that it comes from the federal government, even though it comes from an advisory committee. But there is this like stamp on it because it's on the HRSA's MCHP website.

So now you have this document that says we need better data collection, we need a more diverse workforce. And that includes breaking down barriers so that midwives can practice in all 50 states, making sure that doulas are accessible. In terms of people from the community wanting to become doulas, that it's not set up with hurdles that make it really difficult for people of the community becoming doulas, right, or increasing the number of nurses or physicians.

When you have this in writing, and it's published on this federal website, you then have the ability to say this is really important, look—Montana, North Dakota, Florida, all these states, this is from our federal government. This is what they're saying, this is what the experts are saying we need to do. So there is that credibility that this has been published, and it's out there, and it's on a federal website. So this report has some credibility that can be used by people who are already doing this work who might be working in states and organizations that seem immovable, that seem that they cannot be flexible, that couldn't possibly meet the needs of certain communities. But now you have this document that says yes, you can, and it needs to be done now.

JOHNSON:
Does equity benefit from this discussion?

PALACIOS:
Yes, it does. Equity does benefit when we realize as a nation that we could be so much better and that we have to think holistically, because what we've been doing hasn't been working. Perhaps over the past 50 years, the maternal mortality rate and the infant mortality rate has come down, but it's not to zero. It's not where it should be, which is a lot lower. And when we know for certain that some BIPOC communities have much higher rates and that it varies regionally.

South Dakotan Native American women died seven times the rate of white women in our national maternal mortality rate. There was a report out of South Dakota that had this information. When that report came out and I read it, I was so thrilled because someone did the work, because they understood, because they lived it, probably. And they saw what was happening, and they counted appropriately, and they found that in their state, Native women die seven times the rate of white women in our nation from maternal mortality.

JOHNSON:
What do you want ASTHO members to do with this report? How would you like them to engage with it now that it's available?

PALACIOS:
I would like to see that communities are integrated, and that states and territories really get involved with the communities that they're trying to serve. So that means engagement and that means history. That means a relationship forming and sustaining that relationship.

So it will probably look a little different for every state and territory of how that relationship unfolds; but if you really want to change for the better, then you have to go to the source. You have to ask the community, you have to ask people who are living this what can be done, because they will have better solutions than I can give at this larger national, overseeing level.

I don't know what's going to work in Alaska versus what's going to work in Montana or even Arizona, because I'm not in those communities. I don't live there. I'm not invested in living in that community, so I don't know. But I know who does. And so, back to the states and territories, all those agencies need to be invested; so, get involved with community-based organizations. They're going to be the leaders. And not just one—it needs to be a number of them. And they need to have partnerships across the community, not just with one community organization or one tribal nation out of the state. That does not count because it has to be across different groups of people.

JOHNSON:
Now that the recommendations are available, what should we do next?

PALACIOS:
We need better data collection. That needs to happen now. We need to know exactly where we are. And I understand that when people employ PRAMS—and PRAMS is a great starting point. Especially, I love how experts and others are invited to come and help change and shift the questions for PRAMS, that's wonderful. But when people ask for PRAMS data, they should be free. We should not have to pay to have access to look at certain variables out of PRAMS.

So I believe our government should prioritize data collection, and we need that to happen now. We need to know what's going on in our country, across the nation, regionally, we need to know that right now. And once we learn that, then we can decide what needs to happen next, which is likely going to be community participation and engagement for us to create steps that will be able to meet the needs of the community that will be worth it, that will have meaning.

JOHNSON:
Katelyn Strasser works with nine tribes in South Dakota. American Indians represent about 9% of the state's population.

STRASSER:
South Dakota is already implementing or working towards implementing many of the recommendations. We've been trying to ensure American Indian representation in our coalitions and our committees, such as our child and maternal death review committees. Our maternal mortality review committee reviews all deaths regardless of the cause and uses the Maternal Mortality Review Information Application system, or MMRIA, that's mentioned in the report. And that's so that de-identified information from these reviews can be aggregated into national reports and we can more accurately represent the health status of American Indian women.

Also, our maternal child health programming is guided by the lifecourse theory, and we have several current programs that aim to address social determinants of health for mothers and infants, including expanding our Bright Start home visiting program.

JOHNSON:
How do you see your agency using these recommendations?

STRASSER:
The recommendations suggest increasing surveillance of interpersonal violence, substance use, and mental health questions, particularly in the Pregnancy Risk Assessment Monitoring System, or PRAMS, survey. South Dakota has implemented all of these topics into our statewide survey, and we oversample American Indian mothers to ensure a representative sample.

We're also currently finishing up a project funded by ASTHO where we linked our PRAMS data to our Medicaid claims data. We're very interested to know how the experiences and behaviors before and during pregnancy are associated with care at delivery and postpartum. Our primary research question was whether those women who had an indication of postpartum depressive symptoms in PRAMS had mental healthcare, including screening, treatment, or referrals. And this continued analysis will be very helpful in understanding American Indian access to and utilization of care.

JOHNSON:
What about community voices? How are you incorporating those into this process?

STRASSER:
Well, we try to use qualitative data when possible. Our maternal mortality review committee abstractor conducts interviews of close relatives of the women whose deaths we review. This information is very different from what is found in the medical record and tells the complete story of the circumstances surrounding these deaths. These interviews provide us with valuable insight into the lives of each of these women that can be used to inform prevention recommendations.

JOHNSON:
We've heard a lot about trust and partnerships in this conversation today. How do you incorporate those into your work?

STRASSER:
Well, during the COVID-19 pandemic response, the Department of Health met weekly with South Dakota tribes. And we are still having frequent meetings on various health topics to build trust and identify ways to partner on these health issues. For example, last fall when we saw the very high American Indian infant mortality rate, our staff joined a monthly call with each of the tribes to share data, discuss our resources, and talk about ways to collaborate to reduce infant deaths.

And during our 2020 Title V needs assessment, we heard feedback that data sharing and collaboration should be a top priority for the next five years of our work. So during that time, we created a workgroup of data partners from across the state, including partners who gives Native perspective to address this issue. Our group started discussing many of the data issues that have been brought up in our discussion today, and out of that discussion our group created a tool to guide our work.

JOHNSON:
What advice would you give to your colleagues in the states and territories if they are thinking right now about doing more work in this area?

STRASSER:
My advice is that you can have all the right tools and do the best statistical analysis but, at the end of the day, I think this work starts with relationships. Data sharing in any context requires a level of trust. You must build partnerships and continue to show up for these people. You can't expect to always benefit from the relationship or come in with your own priorities or timeline. You must consider other cultural norms. And above all, show people that you care. So I think if you create that solid foundation, then the rest of the work will come much easier.

JOHNSON:
Thanks for listening to Public Health Review.

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For Public Health Review, I'm Robert Johnson. Be well.