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#149 - Lily Lou / Ed Ehlinger / Janelle Palacios - Perinatal care in AI/AN Communities


ACIMM Lily Lou Janelle Palacios Ed Ehlinger Incubator Podcast


Hello Friends 👋

We have a special interview for you this week. We are joined by three exceptional individuals: Dr. Lily Lou, Dr. Ed Ehlinger and Dr. Janelle Palacios. In this week's episode of the podcast, we chat about the perinatal health of American Indians and Alaska Natives in the US. This is an important topic that deserves more attention.We're discussing the power of personal narratives in shaping healthcare policies. This episode starts off with a riveting exploration of a pivotal HRSA meeting on tribal grounds that triggered a sea-change in the federal perspective. We dissect the report titled, "Making Amends Recommended Strategies and Actions to Improve the Health and Safety of American, Indian and Alaska Native Mothers and Infants", which identifies key areas of action.


The journey doesn't stop there. The unique legal status of these communities as sovereign entities, and the resultant challenges they face in the healthcare system, is a pivotal topic in our discussion. We're not just talking about the need to hold healthcare systems accountable for their impact on these communities but also shedding light on the role of individuals within the healthcare ecosystem. From professionals to trainees, we discuss how each one can contribute to bridging healthcare disparities.



You get in touch with our guests via email at:


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You can access some of the reports mentioned on today's episode here 👇

Pregnancy-Related-Deaths-AIAN-Data-MMRCs-2017-2019-H
.pdf
Download PDF • 421KB
birth-outcomes-AI-AN-mothers-infants
.pdf
Download PDF • 1.12MB
AI-AN-report-cover-letter-dec-2022
.pdf
Download PDF • 119KB

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The transcript of today's episode can be found below 👇

[00:00:00] Ben: Hello, everybody. Welcome back to the incubator podcast. We are back. With a new interview for you guys today, Daphna, how are you feeling


[00:00:10] Daphna: I'm feeling better. Thanks. It's a little under the weather in the middle of the week, but I'm doing fine now. I'm doing fine


[00:00:16] Ben: a little, just a little, huh?


[00:00:19] Daphna: I'm doing fine and I'm super excited about this interview because when one of the guests, when Dr. Lily Liu asks you, hey, what do you think about this? You, the only answer is, yeah, that sounds awesome. Let's totally do it. So that's, that's how we got introduced to the topic.


[00:00:41] Ben: Yeah. So we're, we're doing a special episode on with a group of, uh, doctors from the advisory committee on infant And maternal mortality. Um, it's a very exciting episode, by the way, for the people who may wonder, uh, [00:01:00] we record this, we recorded this episode before Daphne got sick. So it's not like she's going to get better in the span of five seconds.


[00:01:06] Ben: Uh, but just in case you're still figuring out our process. Um, and, um, yeah, and we talk to them about, um, maternal and neonatal, uh, mortality. And care in the American Indian and Alaska native population. It's a fascinating topic. And this this week we have, um, really the pleasure and the honor of having on the show.


[00:01:35] Ben: Three guests and their bios are extremely long. So we're, we're going to try to get straight into the episode and give you just a brief introduction as to who they are. As you mentioned, Daphna, we have, um, the pleasure of having with us. Dr. Lily, Lily, Dr. Lily. Lou who is the immediate past chair on the section on neonatal perinatal medicine.


[00:01:57] Ben: We also have Dr. Janelle [00:02:00] Palacios who is an ACIMM, the advisory committee on infant and maternal mortality member. She was on the ACIMM committee and is a nurse midwife in the San Francisco area. She has helped actually bring many. Of the native voices to the table of the discussion, and you'll hear from her.


[00:02:24] Ben: And we also have the pleasure of having with us. Dr. Ed Ellinger, who is the former chair of the HHS Secretary's Advisory Committee on infant mortality. And so we're very excited to bring a topic that, um, I had personally not really, uh, known much about before this episode. And, um, I think, I think this is going to be a super informative for, um, anyone really not familiar with this topic.


[00:02:50] Ben: So, uh, without further ado, please join us in welcoming Dr. Lily Lu, Dr. Janelle Palacios and Dr. Ellinger to the show[00:03:00]


[00:03:00] Ben: Dr. Lily Lou, Dr. Janelle Palacios, Dr. Ed Ellinger. Thank you so much for joining us on the podcast this morning.


[00:03:08] Ed: great to be with you.


[00:03:09] Janelle: Thank you.


[00:03:11] Ben: So we, I have to thank Daphna for this, for this episode, because you Daphna, you, you're the, the mastermind behind this recording. And, and I'm very


[00:03:20] Daphna: Dr. Lou is the mastermind


[00:03:22] Ben: Lewis, the mastermind. Um,


[00:03:24] Daphna: to be the conduit. So,


[00:03:26] Ben: and I'm very happy that we are talking about, um, About the, the, the state of affairs when it comes to, uh, maternal and infant mortality in the context of, um, our, uh, American Indian and Alaskan native, um, friends and colleagues, and talking about the advisory committee on infant and maternal and maternal mortality, the a i, the A C I M M I am wondering, um, if, if, uh, you guys can give us a little bit of a. Brief introduction as to why do we [00:04:00] even need to address this issue of maternal mortality, infant mortality, specifically. In that population of American Indian and Alaska Natives.


[00:04:11] Ed: I think that everybody knows that the United States, compared to other countries, is not doing well. Wealthiest country in the world, we have infant mortality rates and maternal mortality rates that are markedly higher than any other high income country. And then if you look within our country, we have huge disparities in outcomes, uh, particularly BIPOC folks, you know, black, indigenous, people of color, their outcomes are markedly different than and worse than whites, uh, and within the, the, uh, realm of disparities, a lot of the effort has been focusing on black infant mortality because the numbers are large and the statistics are horrible.


[00:04:53] Ed: So, And the American Indian Alaska Native, even though their outcomes are as bad or worse at times, because of the [00:05:00] size of the population and because of their invisibility, they are often ignored and overlooked. And so we wanted to shine light on infant mortality, maternal mortality, particularly then focusing it on where the huge disparities are.


[00:05:14] Ed: And in particular, because of American Indian, Alaska Native outcomes being overlooked so often, we figured we, they needed some special attention. So the last couple of years of our, uh, term on, uh, the advisory committee and infant mortality and maternal mortality, that's where we focused our energy.


[00:05:30] Ben: Yeah, that's, that's, that's a good point you're making. I was actually not aware of this at all. And so for the, for the purpose of this interview, I did, I did some research and, and the numbers are, very impressive. Um, looking at infant mortality rate. I think I was able to find some data from 2018 looking at the infant mortality rate per 1000 live birth, looking at all races combined.


[00:05:50] Ben: It's about like 5. 8, but for American Indian and Alaska Natives, it's 8. 2. And that is, it's, it's interesting that, that this, this is [00:06:00] very, very significant. Um, can, um, my, my, my follow up question is why, why are the numbers so different, um, compared to other, other ethnicities and other groups?


[00:06:12] Ed: This is the 20th anniversary of the unequal treatment report that came out of the National Academies for Science, Engineering and Medicine, and they're just reviewing it and they're, and in looking at unequal treatment, uh, yesterday on a, on a podcast or a seminar that they did, they looked at the fact that it's not about the care necessarily.


[00:06:33] Ed: Yes, unequal treatment does occur in, in, in facilities, in, in healthcare provider offices and hospitals. And as important as that care is, the most important thing is the living conditions in which people exist. The environment, the social, the cultural, uh, environment, the economic environment. And it's the, the bias, the racial bias, the racism, uh, [00:07:00] the, the genocide, the historical trauma that has occurred in those that is just playing a huge role on the outcomes of both mothers and babies.


[00:07:10] Ed: And so it's really the social, economic, and cultural conditions within our country that puts toxic stress. On these populations that is leading to the huge disparities that we have, and the medical care that they get is also insufficient and poor quality and


[00:07:29] Ed: does not have the accountability. So it's a whole host of factors.


[00:07:33] Ben: Lily, I think you wanted


[00:07:34] Ben: to say


[00:07:35] Lily: Oh, I just think that, um, healthcare is not just the care that we provide, but it's the way that the community and the members of the community look at healthcare and how they feel about what it's like to come into population to population, even if we're in the same zip codes.


[00:07:51] Daphna: Yeah.


[00:07:52] Ed: And also, I know Janelle, when she's on our committee, is really articulate and she's actually changing the perspective of our [00:08:00] committee in terms of. Uh, why this happens because of her lived experience and her professional experience. So I'm just curious, Janelle, you know, how you would respond to that question, you know, in, in a different way than I might.


[00:08:12] Ben: Yeah, as a nurse midwife, I think, I think your perspective is, is quite, it's quite interesting.


[00:08:16] Janelle: Yeah, I'm a nurse midwife and I'm a researcher and, uh, it does come back to this whole area of it's multifaceted. It is definitely related to historical events that have, um, really shaped systemic policies. Uh, amongst Native people, amongst American and Alaskan Native people, and if we look at history, it was, um, extermination followed by assimilation, followed by sterilization as part of that, and, um, relocation, and now the, there's this erasure that's happening.


[00:08:54] Janelle: because native people are not counted correctly. So if you're looking at state and national [00:09:00] data, we are always the asterisk nation. There's always an asterisk next to our, our population. Um, or where there's something else group, because the amount of population is so small, they're not able to make meaningful.


[00:09:14] Janelle: Um, estimates or decisions about what's happening, but I would advocate that that in itself is an issue when we talk about data. Um, so for example, the data that you're referring to, Ben, that is 2018 data, and if you look at a spread that is like 2015 to 2019, the rate of infant mortality among Native children or infants is 8.


[00:09:38] Janelle: 4, it's a little bit higher, it just bubbles back and forth, but I suspect it's even higher. It's probably higher than 10 because we're not counting infants


[00:09:48] Daphna: mm,


[00:09:49] Janelle: American Indian Alaskan native infants, because we count it by single race. And studies have shown that when you pull. Multiple races and that include American Indian Alaska [00:10:00] native and because of our history where we are a population that is highly mixed, highly mixed, possibly far, far more highly mixed than any other group that when you pull, um, more than just the single race, but you include multiple races and, and you include Hispanic ethnicity, there, I suspect you're going to find regional variation. And amongst that, you're going to find regional variation that is over 10. Thank you. And possibly nationwide variation over 10. So it's data issues.


[00:10:31] Lily: Janelle, I think, that's a really important point. I think, um, in the conferences I've went, gone to recently, there's been a lot presented about lumping Asian populations together and how their outcomes and their experiences are so very different. And two of the places I've gotten. to practice include New Mexico and Alaska and the populations and the culture and the way that they access care are so very [00:11:00] different from region


[00:11:01] Ben: Which, which, which groups are being bundled together specifically, just because for our audience, I'm not familiar with that as well, but when you're, when, when you're mentioning that, can you, can you explain a little bit more specifically which groups you're referring to and what does that look like in the data?


[00:11:15] Janelle: If you're talking about American Indian, Alaska native, we're clumped together as American Indian, Alaska native. And our histories are slightly different, although we have a very similar colonized history, um, and our cultures are very different. There are many different cultures in many different languages, but we're clumped together. As a single race. And so it depends. It depends from day one, how someone identifies the parent, right? And what they identify their child or their infant as but, um, there's even an argument to go even further than that to look at region wide, right? You have, um, people who live in the plains area, people in the Midwest, right?


[00:11:54] Janelle: Yeah. Versus the Southwest versus the Southeast versus Alaska versus the Pacific Northwest. [00:12:00] And then do you go micro? Do you look at intertribal? differences. So do you look at, uh, for example, I'm Salish and Kootenai from Montana. Do you look at Salish and Kootenai versus Apache in New Mexico or somewhere in the Southwest?


[00:12:16] Janelle: But then again, there are differences because we are a, because of our history and because of government policies, and this is going back to that history pace place where. American and Alaskan Native people, um, in general, there were policies that have shifted people off their ancestral lands and then later on tried to, um, tried to dissolve tribes and reservations by, uh, terminating them.


[00:12:45] Janelle: And so there was this flood in the 1950s of, of over 200, 000 Native people that went into cities on a government program sponsored by the federal and it was a way to assimilate Native people and to also [00:13:00] Dissolve a tribe and take away that land absorb it back into federal land holdings. And when that happened, then we are all over.


[00:13:08] Janelle: We're not just localized anymore. So you have people who are originally from the southeast or the southwest living now in Oakland and San Francisco or in the Bay Area in California. So now we are a mobile, highly mobile population too. Um, so it is, it is difficult. To really pin us down because we have a story of of migration of removal and that story part of that story is there are some of us who live in an urban setting, but we have roots that are in our very rural area and we might go back back and forth to the between these two places.


[00:13:46] Janelle: And then there are those of us who are in that rural area. on or off the reservation itself, um, but still living in an, in a rural community. So [00:14:00] if you're looking at regions, it's hard to say that all the Pacific Northwest is going to be representative of all the tribes in the Pacific Northwest, all the people in the Southwest, you cannot place them as monolithic, it's really difficult, but. I do believe because of those social determinants of health that Ed was talking about, the geographic isolation of which reservations were placed geographically isolated away from European settlers, that so as a way to, um, um, prevent any war that was happening. So if you're looking at American Indian and Alaskan Native people in rural communities, they're going to have different sorts of access to health care and different ability to like have a neonate that is hospitalized or have, have appropriate care because of just their location.


[00:14:53] Janelle: So that is


[00:14:54] Janelle: a whole other issue with this.


[00:14:57] Ed: And Ben, one of the things related to your question, a lot of [00:15:00] times. The way we collect data, we have one race, and with your multi race, you just choose one, and oftentimes the American Indian and Alaskan Natives will not choose, for a whole variety of reasons, uh, you know, their, their indigenous roots. Uh, also, when you come into the hospital, oftentimes people make Assume they'll assume certain races and without really checking with the individuals.


[00:15:21] Ed: So there's, I think there's a huge undercount and, and we don't, we don't capture the complexity of race in our society by, by the right kind of collection of data.


[00:15:33] Ed: I think the feds are working on that, but we're not yet to a place where we can actually count and trust the racial data


[00:15:39] Ed: that we have.


[00:15:41] Daphna: Yeah, I think that's such an important point. We've talked about it so many times on the podcast about, um, right. How are, how are people counted or described? And then especially even in our own research, right? For so much, so much of our community is in academic medicine. They're doing research. Um, do we offer all of the racial and [00:16:00] ethnic choices even, you know, on our survey data?


[00:16:04] Daphna: Um, And I think you're highlighting, um, when we talk about really the scope of the problem, um, some of, uh, you know, some of the other complicating factors. Um, I heard you talk about obviously discrimination in, uh, you know, healthcare environments. Access to care, um, and this, uh, maybe mistrust of the system given this, um, complicated, um, history.


[00:16:38] Daphna: And so I'm hoping you guys can speak a little bit to Some of those kind of modern barriers. Um, you know, we're really interested in infant mortality, but it's obvious that this is from a prenatal, this is a problem in access to care, access to resources, adequate nutrition. Um, and maybe you can talk about some [00:17:00] of those, um, kind of concrete barriers to, to care.


[00:17:05] Ed: Certainly in our report, we identified a list of reasons why, you know, sometimes it's language and cultural factors that, uh, you know, interfere with actually collecting the data. Uh, there's the fear of the data collector person.


[00:17:22] Ed: Uh, you know, you don't trust that person. Um, you know, and. And, and, and then there's, as, as Janelle pointed out, there's the, the urban or non tribal folks that often don't get counted, uh, because they're in the cities and so they, they don't get looked at at all.


[00:17:42] Ed: So all of those factors, you know, weigh into the fact that they get undercounted, um, and people have a history of not trusting, you know, the people who are collecting the data. So they hold back on a lot of the information.


[00:17:56] Janelle: There was a recent study that looked at, uh, it was a [00:18:00] qualitative study that interviewed, um, pregnant people, American Indian women who are seeking prenatal care, and it was asking them barriers about accessing prenatal care, which is then that precursor to infant health, right? So, um, in the qualitative study, they found That, um, transportation, right?


[00:18:17] Janelle: Just that geographic isolation and then being far from care and having reliable transportation. So that care might be 20 miles. It might be a hundred miles away, but having transportation, reliable transportation was an issue. Another one was, um, the lack of. Concordant care, like racially concordant or culturally concordant care that they would go to, uh, to receive care, but the people who are providing care did not understand them and were not, did not have enough humility to make them comfortable to seek care again.


[00:18:50] Janelle: Right. Another issue was, and this is a big issue is the fear, the mistrust, the fear that if they were to [00:19:00] access care and depending upon the. National recommendation for universal toxicology testing on pregnant people. And depending on which state or which reservation you lived on or which community, you could be put in jail for having a positive toxicology screen while you're pregnant, let alone as you're delivering a baby.


[00:19:24] Janelle: So there is also that fear and mistrust of, I don't want anything to happen to my family. And if I access care, they might find this and some other things might happen. So whether it's child protection services or law enforcement, so it is, that is a genuine fear and that, that happens today. I was on the phone recently with colleagues in Montana where they


[00:19:50] Janelle: were talking about


[00:19:51] Janelle: a particular group of people who were not accessing care


[00:19:54] Janelle: because of that specific fear. So,


[00:19:59] Lily: People [00:20:00] feel like that about answering the census, So, um, and with the, the way information, our third cycle of grant funding, and we're providing grants to members just to do things that we think further our strategic goals, and one of the ones we're finding in this cycle. Is on ascertaination is so pervasive, um, information gathering.


[00:20:24] Lily: Uh, I think we all have a little element of, I wonder who's going to get this information and what they're going to do with it. So, the, um, AAP section on neonatal perinatal medicine is actually in a race. So, um, Dr. Lamia Sojour is going to look at how we do that and what questions we ask and how we can do it better so that we can get better data.


[00:20:46] Ed: You know, we've, we've been talking about this, you know, around data. And I think people who are listening for this may not recognize the implications that this lack of data has. And I particularly have, was impressed with the fact that [00:21:00] missing and murdered indigenous women and girls gets totally undercounted because of this data collection issue.


[00:21:08] Ed: They're off reservation, so they're not identified as American Indians. Uh, they're, the focus mostly on those who are on tribal land. And it's a huge undercount, and it's a huge issue, particularly for American Indian Alaska Natives. And yet, it gets ignored because of the data collection. So it has major on the ground implications for the health of indigenous women and girls in particular.


[00:21:32] Daphna: Can you speak a little bit again, as we're kind of describing the full scope of the, the problem, um, some of the major barriers to even being insured for this population?


[00:21:48] Janelle: Yeah, so this is very complicated. Um, so, um, so first, when we talk about insured. Um, it is a misconception that, um, Native [00:22:00] American Indian Alaska Native people, um, have insurance, everyone has insurance, no one pays taxes, everyone has casinos. Those are like some big stereotypes among this population, right?


[00:22:10] Janelle: But because of our history where a number of tribes Signed treaties. We had nation to nation government relationships to the federal government. Because we signed treaties with the federal government, and we gave up large portions of our historical ancestral land in exchange for smaller reservations, one of the benefits, one of the ways of payment was health care access.


[00:22:40] Janelle: So, we are a group of people who prepaid for our healthcare. We have a prepaid plan, okay? That comes with a lot of strings, okay? So, that care comes in the form of Indian Health Service, which was Started in the 1950s, and you have to think about these treaties were signed in the 1800s, [00:23:00] 1700s to 1800s, okay, and it wasn't until the 1950s we had Indian Health Service.


[00:23:05] Janelle: So Indian Health Service provides care to a select group, not all American Indian Alaska Native people. It's a select group of people. Um, and, and there's a whole lot of criteria that goes into it, but let's just say, um, to make it easy, you have to be an enrolled member. And if you're not an enrolled member, based on your tribe's decision of what that means, you can be a first generation descendant or a child that is not enrolled and you can also receive care until you're about 18.


[00:23:34] Janelle: That's that's in a nutshell, that's making it very easy for those who don't meet those requirements and who do not live. In an Indian health service service site where there is a there is a hospital or a clinic, um, some communities, some tribes have taken the money that is part of the money that is given to Indian health service.


[00:23:53] Janelle: And let me just say it's not given it's every year Indian health service has to go before Congress and [00:24:00] ask. for funding and Congress decides year to year how much to give. Okay. So it's a congressional appropriation. There is no foundational base measurement. It changes every year and it's been underfunded for ages.


[00:24:13] Janelle: But, um, once, uh, the, some tribes have decided they do not want Indian health service per se, but they'll take the money instead and then they will create their own clinic. And so they decide to have. to hire their own providers. So then you have those tribes, um, on reservations that have their own health clinic or an Indian health service clinic or hospital.


[00:24:36] Janelle: There are very few Indian health hospitals in our nation that keep closing and especially the labor and delivery units keep closing. So there's a shortage in that area. If you do not have Indian health service, Then you have to look at all the arrays of other healthcare access that everyone else has access to, like Medicaid and Medicare.


[00:24:56] Janelle: Um, if you're in the military, right, TRICARE. [00:25:00] Um, if you have private insurance or if you are uninsured, that's, that, that's then the pathway for American and Alaska Native people. It's complicated and it has been shown that the per capita expenditure that IHS monies spend On a patient is roughly a little over 4, 000, and this is like 2017, 2018 data.


[00:25:23] Janelle: It's about 4, 000. The military is about 7, 000 per person and, um, Medicaid, Medicare was close to 11, 000 per person. It is a big difference. I just want to go back for a moment, if I can, that when we're talking about identity and deciding to include, um, a more inclusive, broader definition of American Indian Alaska Native, including more than just a single race, the National Center for Fatality Review and Prevention, the people who are responsible for coordinating, [00:26:00] um, fetal and infant maternal or mortality reviews, FEMARS, they went back and they looked at their data.


[00:26:07] Janelle: And they included single race and multiple race and ethnicity, and they found an increase of deaths and infant deaths, and it was higher than if you just looked at single race. Similarly, the CDC just released a report, which I will share with you that they looked at their maternal mortality between a certain period of time recently across 36 maternal mortality review committees.


[00:26:33] Janelle: And they had originally about, uh, eight or nine, I think maybe nine, nine maternal deaths that were labeled as American Indian Alaskan native. But when they included more than one race and Hispanic ethnicity, it almost doubled. So they had 17 total deaths in a, in a few, um, year period that they were then able to distinguish that there were, there were more disparities than originally appeared.[00:27:00]


[00:27:00] Janelle: So it is very important how we categorize people and how we count people, and it will give us a better picture because if we don't, then we're able to brush everything aside and say, there's no problem here. There's no, no need for extra resources. There definitely is.


[00:27:19] Lily: And Janelle, you, you mentioned something that's a really, um, important concept and that's, we have overlaying healthcare systems. One is what everybody. that, um, on this call probably accesses, um, is the mainstream health care system. Then there's the IHS and there's the network of, um, federal health, the FQHCs.


[00:27:44] Lily: And each of the populations served by those different, um, systems have


[00:27:50] Lily: access to differently funded resources.


[00:27:54] Ed: And I was surprised to learn, you know, as part of our committee, that of [00:28:00] the money that the Indian Health Service provides, Only 1 percent of those dollars actually go to urban Indian organizations, and yet that is where, you know, between 50 and 70 percent of the actual American Indian Alaskan Natives, uh, live.


[00:28:15] Ed: Uh, so it's really an under, well, the system overall is underfunded,


[00:28:20] Ed: and it's particularly underfunded for those American Indian Alaskan Natives who


[00:28:24] Ed: live off


[00:28:24] Ed: reservations.


[00:28:26] Lily: It pleases me to see that people are Making conscious efforts to do land acknowledgements when presentations are given, but that doesn't address Janelle's point of people don't always live in the same place where, you know, in the place that was their land. Many people have been dispersed and if there's, if we can find a way to acknowledge everybody wherever they have.


[00:28:54] Lily: Come from and where they've ended up, then that's what we really need to do. You know, we talked as


[00:28:59] Lily: [00:29:00] we were getting


[00:29:00] Lily: started that we're talking today from five different time


[00:29:03] Lily: zones.


[00:29:05] Ben: Janelle, you mentioned something about the IHS and, and one of the points you made was that a lot of the places where people can get care are shutting down. Um, can you tell us a little bit more about why that is? I think we addressed some of these issues. Um, so we circumvented a lot of these, uh, issues in the discussion about about funding and so on.


[00:29:26] Ben: But I'm just curious as to what are the key driving factors that are causing


[00:29:31] Ben: these centers to just completely shut down.


[00:29:34] Janelle: Well, I think it's really important to put this in context in just in general. We know that the March of Dimes report that there is a, uh, growing maternal, uh, maternity care deserts right across our nation, and especially impacting rural communities. And so if it's already impacting rural communities for just, you know, the nationwide, can you imagine what it's happening to a historically continuously marginalized community [00:30:00] like American Indians, Alaska native people.


[00:30:01] Janelle: So in the lower 48. I would say that Indian Health Service hospitals are closing for a number of reasons. Um, First of all, some of them are closing because they just don't have the providers that can staff it appropriately. And because this is a chronic problem in Indian Health Service, we have what's called purchased, uh, referred care.


[00:30:27] Janelle: And so basically, if, if I'm a midwife at an Indian Health, service hospital and there is someone that comes in and is, um, very complicated, pregnant person to take care of. And maybe the physician is not in house and I don't have the resources to take care of that. a complicated patient, then I can transfer that patient, you know, with mtala stably to a different hospital.


[00:30:53] Janelle: And or if I was in clinic seeing someone and this person is risking out of my care, I can make a referral [00:31:00] to someone else. But that does not necessarily mean that it's going to be covered 100%. by Indian Health Service money because that money runs out really quickly. This is really disturbing, but there is this policy called loss of life or limb.


[00:31:15] Janelle: And that's basically what it comes down to in terms of how Indian Health Service is funded, that their money runs out so quickly that they have to then decide who they're going to, um, pay for their care, who are they going to refer out for different surgeries that might be needed, preventative medicine based on loss of life.


[00:31:35] Janelle: or loss of limb. Sorry, it's loss of limb or loss of care. Sorry, loss of life or loss of limb. So, it comes down to whether you're going to lose a limb or you're going to lose your life at some point that the Indian Health Service has to make these decisions. So, chronic underfunding, being understaffed, not having the appropriate staff.


[00:31:53] Janelle: Another one is the Indian Health Service facilities. Our 10 years ago, the [00:32:00] average age of these facilities were 40 years old on average. That was 10 years ago. And there's a long line and a long list of facilities and clinics that are awaiting trying to be updated or renovated. And it takes a long time.


[00:32:17] Janelle: So a number of these clinic sites and hospitals have aged out and they no longer work. They're dangerous. The other issue is that patients have gotten the message. In many different forms, whether it's the kind of care you receive at Indian Health Service, um, whether that's tied to long wait times or you're just going to be referred any way out.


[00:32:41] Janelle: In some communities, people have stopped going. They have stopped using the Indian Health Service and they prefer going elsewhere.


[00:32:48] Janelle: So those are a number of reasons why the hospitals are closing down and why L& D is closing down. There are probably more and, um,


[00:32:59] Janelle: And [00:33:00] probably, uh, more negative reasons why Indian Health Service sites are closing down, especially labor and delivery units.


[00:33:09] Janelle: But that is not public knowledge. And even though Indian Health Service, um, has been asked multiple times amongst the ACIMM committee, the ACIMM committee by, uh, chaired by Dr. Ellinger, Indian Health Service is not able to articulate. Well, enough answers, um, to the full extent giving a, uh, a straight answer versus talking in circles.


[00:33:36] Janelle: So it's, it's difficult to really understand the problems and what I'm sharing with you is widely known publicly pointed out and government, uh, GAO reports, government, government accountability office reports that have gone in to, um, investigate different sectors of, um, our, uh, the federal government's, um, uh, um, [00:34:00] Programs.


[00:34:01] Janelle: And so a number of these GAO reports have actually looked at indian Health Service on a number of areas. And so what I've shared with you comes from some of those reports.


[00:34:09] Lily: And the, I think the closure of, um, I think the closure of hospitals in the Native serving areas is a magnification of what's happening in rural areas across the country, no matter what populations they serve. And, um, some of it involves the fact that when you're in a rural area, you typically serve less people.


[00:34:30] Lily: And so your volume is not high enough to provide a good living for. a doctor or a nurse to go to go there. And the part of that is how do you attract people to stay and serve that community long term rather than, um, doing their time in an underserved area? And then they're going to move on to, um, a more lucrative practice area.


[00:34:55] Lily: Um, part of it is expertise. When you have [00:35:00] people, um, not staying as long, and part of it is, this is really important, is the payment structure for the services that are needed close to home, um, does not match what it takes to live there and provide


[00:35:14] Lily: service on a smaller scale. It's, you know, there are economies of scale


[00:35:18] Ed: and, and Janelle, Janelle, pointed out the Indian Health Service, and I think this relates to the very first recommendation we made in our report. Is that we have not prioritized American Indian Alaskan Natives in our country for a whole variety of reasons, and it has huge impacts. The data are there, the Indian Health Service is inadequately funded, it is inadequately overseen, it is over, it is inadequately managed.


[00:35:45] Ed: Um, people know that. The data are highlighting the fact that American Indian Alaskan Natives don't have access to care. The care that they get is, is in, uh, inappropriately poor. Um. And yet we don't, excuse me, we don't act on it because we've [00:36:00] not prioritized this group and it continues to be that way. And that was so our recommendation is.


[00:36:05] Ed: Very, the first one is that we must prioritize this because everybody will benefit if we prioritize American Indian Alaskan Natives. I mean, Julia Lathrop mentioned this back in 1912 when she started the Children's Bureau, that if we focus on the most needy population, the most underserved population, actually everybody's going to benefit because it basically forms a basis that everybody will improve.


[00:36:27] Ed: So if we can improve the outcomes of American Indian Alaskan Natives, African Americans are also going to improve. Hispanics are going to improve. All, all groups are going to improve. So it's, it's attended upon us to prioritize American indians and Alaska natives.


[00:36:44] Lily: One of my favorite aphorisms is that a rising tide floats all boats. So if we can figure out how to provide care to those who are most vulnerable and, um, most disadvantaged, then we can figure out how to do things better for everyone. [00:37:00] So, there, I wanted to mention a few things about, um, this report that I think it are so great.


[00:37:08] Lily: Um, one is, I, I think it's very articulately, um, making a plea to finally do something about these things, but I loved that the meeting was not in Washington, D. C. It was where Native populations live and work, and people who have lived experience were invited to be in the discussion. So, So,


[00:37:32] Lily: um, Ed, do you want to talk a little bit


[00:37:34] Ed: Well, Lily, I'm glad you brought that up because this is important.


[00:37:37] Ed: the


[00:37:38] Ed: HRSA has never had a meeting outside of Rockville, Maryland. In the 31 years of the, the advisory committee, I always met in Rockville and trying to get them to move out of Rockville took a lot of work. But I said, if we're going to talk about American Indian and Alaska Natives, we have to be on tribal land.


[00:37:57] Ed: So it took a lot of work, and we, they finally agreed. And, you know, and [00:38:00] then they facilitated that. We met on the land of the Shakopee Mdewakanton Sioux community. Made all the difference in the world for the conversation.


[00:38:07] Ed: First of all, people from across the country, American Indians, Alaskan Natives, felt much more willing to actually show up in person and be there and form relationships because they


[00:38:17] Ed: felt a little, a lot safer.


[00:38:19] Ed: They felt heard. Um, they formed some relationships and the committee that was there could hear these stories firsthand. This, this amazed me. These people who are experts in the field of maternal and infant care said, Oh, I knew the data all along. Um, but. I didn't know how important it was until I heard these stories and that's the other point that came out of this is that we have a lot of the objective data, but the personal stories, the living experience, our data, just as important, actually, and more powerful than the birth certificates and death certificate data.


[00:38:54] Ed: And so I think the feds saw the power of this and said, Oh, my goodness, we have made a mistake [00:39:00] over all of these years not to be meeting in the communities that are


[00:39:03] Ed: being affected. So they've actually changed their policies. So


[00:39:05] Ed: every other meeting is now going to be


[00:39:07] Ed: in a community where they can hear those community voices.


[00:39:10] Ed: So something is happening because of that


[00:39:13] Ben: That's great. And for the people who are listening, the report we're referring to is called Making Amends


[00:39:18] Ben: Recommended Strategies and Actions to Improve the Health and Safety of American Indian and Alaska Native Mothers and Infants. It's available online, but we'll link it directly on the episode show notes.


[00:39:27] Ben: So even then you don't really have to look too far for it. And it's, it's very extensive. It's very well written and has a lot of very, very good


[00:39:35] Ben: information about


[00:39:36] Ben: both the state of affairs and the perspective of,


[00:39:39] Ben: like you said, the


[00:39:40] Ben: people in the community.


[00:39:45] Lily: And it doesn't only talk about healthcare data. I thought it was very interesting that you addressed the idea of how women are


[00:39:52] Lily: viewed. And, you know, just added cultural attitudes


[00:39:56] Ed: I think most clinicians then, you know, they look at the [00:40:00] end product. They look at the


[00:40:01] Ed: interaction in the office in the hospital, and they don't realize the context from which all of these things evolve. And our report really focused more on the context than on the services and programs. And, and so that was the other unique characteristic of our report.


[00:40:18] Ed: It actually, it was a report about context and it put all of the data into a perspective that could be understood. And as Lily pointed out, the medical care is important, but it's all of the stuff leading up to that, that is the most important, it leads to all of those


[00:40:35] Ed: outcomes.


[00:40:37] Daphna: Yeah, what you guys are describing is really kind of the underpinnings of culturally competent Mm hmm. care. Um, but before we get too far away from the report, um, you guys did make, uh, three recommended areas for strategic action. Since it sounds like there are so many systemic factors at play. And maybe you can speak to some of those, [00:41:00] um, actions, tasks that we can take from a healthcare systems


[00:41:04] Daphna: perspective.


[00:41:08] Ed: Well, certainly the three general areas. One is make American Indian Alaska Natives a priority, and that meant being represented at the table, you know, having the voices at the table, changing the data collection so that it is important, um, and then change, change some of the focus, particularly of federal agencies.


[00:41:32] Ed: So that was all about the data piece and making it important. The second was recognizing that. Thank you. Uh, American Indians, Alaskan Natives, just like everybody else, are affected by the care that they receive and by the social conditions. So, we want all the federal agencies to work interactively to focus on those social determinants of health.


[00:41:52] Ed: We made a big plea to reform and evaluate the Indian Health Service. And also then work on [00:42:00] workforce, because as Janelle said, you know, race concordant care has been shown to be important. And then the third area of recommendations was about these issues that are particularly, uh, crucial for American Indian Alaska Natives, missing and murdered indigenous women and girls.


[00:42:15] Ed: The incarceration of pregnant women, particularly among indigenous populations, where they're overrepresented. Mental health issues, violence, SIDS. So, so we, general recommendations, prioritizing social conditions and access to care and some of these special projects. Then we had a whole variety of recommendations under each


[00:42:35] Ed: one of those categories.


[00:42:39] Ben: So we're getting into the second half of the of the episode and you are describing A problem that is very depressing because it is both complex and and it's a problem that Many other people may say well these other groups are also dealing with similar issues And so now i'm wondering when you're looking at the state [00:43:00] of things right now What are the and I have some ideas that I want to bring up, but I want to hear your thoughts first Where do you think?


[00:43:08] Ben: The solutions will come from what are the tools that are becoming more and more available that you think will help address these action These strategic action items that will help improve the care for For alaska native and american indian Where where is where do you see hope on the horizon?


[00:43:29] Ed: Before you get to that, answering that last part of, I want to, the first statement that you made is about this group compared to other racial groups. There's, American Indians, Alaskan, don't consider themselves a minority. They are sovereign nations, and that is a huge issue. Uh, because they, the tribes view their relationship with the feds in a totally different way.


[00:43:53] Ed: They are sovereign nations, not a minority group. And so this, their mindset. So they have some [00:44:00] expectations from the federal government because the government promised all of these things


[00:44:03] Ed: and they're trying to hold the government. to those, those promises. The sovereignty also changes the relationships that the tribes have in states because states don't know how to deal with sovereign nations.


[00:44:17] Ed: Um, so they oftentimes get ignored and some of the, and, and the feds have the same problem. Most of their funding comes from, you know, the federal to state to local, but the tribes are not part of that. You know, that that cascade of funding. So I think before we talk about, you know, some of the specific actions, I think people have to recognize


[00:44:39] Ed: the sovereign nation


[00:44:42] Ed: issue should be at the basis of their interaction with people from tribal communities.


[00:44:47] Ben: I want to clarify then because I I it's like you're


[00:44:49] Ben: making a good point My I guess what I was trying to say was


[00:44:51] Ben: as Daphna mentioned that a lot of the issues that we talked about. Um in this context are very often also Uh issues with our health care system [00:45:00] in general where our health care system is failing across the board And so I guess that's what I was I was trying to get at where um that that Um, yeah, so


[00:45:08] Ben: that that's but but thank you for for for making that point


[00:45:11] Ed: So, so one of the things so, you know, and I wanted to bring it because I didn't before we got into into this program, I want to make sure we brought up the sovereign issue,


[00:45:19] Ed: but I also think that health care systems. are not held accountable for the community impacts. And so I think one of the things that we need to do, like Rush Medical Center in Chicago is actually looking at how many people do they employ from the community?


[00:45:34] Ed: How, what are the community outputs that, that occur? How are they changing housing factors? So I think that we need to broaden our definition of what we hold healthcare accountable to. Uh, and the impacts they have on that is one of the way to change the care we can have, you know, the best. I mean, I say, you know, the, you know, when, when my work and the neonatal intensive care unit, this was back in the 70s when we were just [00:46:00] getting, you know, we could save babies really, really small.


[00:46:03] Ed: And, but a lot of energy went into that, but it didn't change the overall outcome because so many people were still at risk and the low birth weight still occurred, we need to shift, you know, away from all of our dollars at the end of life kind of there's, and actually change on some of the preconditions that, that lead to


[00:46:22] Daphna: I love this idea that, um, our healthcare systems, which are moving more into the business sector than the service sector, you know, are responsible for what happens in our communities. Um, and we've talked a lot about some of the major system, um, issues. And I wonder for a lot of our listeners who maybe individual healthcare professionals, uh, even trainees, um, what do you think we can do in our individual?


[00:46:50] Daphna: Healthcare systems or individual?


[00:46:52] Daphna: communities, one on one basis with families, um, to, to move the needle. [00:47:00]


[00:47:01] Janelle: I would, I agree with everything


[00:47:03] Janelle: that has been said, and I would like


[00:47:05] Janelle: to just take a step back and say, Ben, the fact that the, what we are talking


[00:47:10] Janelle: about today was surprising to you is such a crucial part of


[00:47:14] Janelle: this. If we're going to make changes, there needs to be wider awareness that there's this history that has shaped outcomes, and so we have to be able to, as a nation, come to terms with.


[00:47:27] Janelle: The United States history and how systemic policies


[00:47:31] Janelle: have shaped social determinants of health today, and why certain populations may be overpoliced or why they have may have housing or food insecurity, why they may be self-medicating, um, through substances if they have issues going on. Chronic issues, intergenerational issues, right?


[00:47:50] Janelle: So like that's all a part of this, and we have to step away from what I've heard people call the pain Olympics. You know, like, the, we cannot [00:48:00] separate out. That, uh, this group over here and this group over here and this group over here have, uh, these wildly, um, poor outcomes. And we have to look at this as a nation and decide, do we want to be a better nation?


[00:48:14] Janelle: Because what we've been doing and how we've been doing things isn't working. And we have all this data that shows that. So maybe. One of the ways we need to try is an integrated model, right, where we have a holistic model, and it's not just parsed out. So there's a number of things that could be changed.


[00:48:32] Janelle: But whatever we do, if we continue along the way that we're doing, likely the disparities are going to become greater, especially as we have global warming and climate change that, uh, people are going, people are going to be, continue to be more disenfranchised. As time goes on, 50 years from now, when I am close to 100, I do not want to see that, uh, my community.


[00:48:58] Janelle: Is still at the [00:49:00] bottom or is still struggling, but that is that is likely going to happen if the nation as a whole doesn't make changes. And part of those changes would be looking at an integrated model. Look at holistically the whole person talking to community members because communities know and understand what the needs are.


[00:49:17] Janelle: Right? The local people. The local control and power of that the information, the lived experience. So I would only add to that on an individual day to day basis. Yes. Becoming aware of that it's important to understand someone's context. And understanding their history and their context is going to help us understand their preterm


[00:49:46] Janelle: delivery, their, um, you know, any kind of risk factors or any kind of, um, problems that when people are born or infants accumulate or sudden infant death, you know, like those things are going to [00:50:00] be understood better and possibly prevented if we understand context and work on ameliorating those contexts.


[00:50:10] Ben: Yeah, and I think, um, to, to the point you were making, I think I, I'm in a unique position because I am not from the U. S., right? And I, and I came to the U. S., um, pretty late. I mean, I came to the U.


[00:50:21] Ben: S. after, like, when I was in my 20s. And so what's interesting is that I did learn history in Europe, but the history of the U.


[00:50:29] Ben: S. was, what, maybe a week, a week in 11th grade. And so when we're talking about genocide, it's like, yes, that, that, that, that. That I'm aware of. But then when you read the report, you read everything that happened and all these implications into how we deliver care today. And you're like, Oh, my God. And I think, fortunately, our country is a country of, uh, populated by a mixed group of people and doctors coming from all walks of life in all parts of the world.


[00:50:56] Ben: And like, and I think just like me, We may be familiar [00:51:00] with the big tenets of American history, but not the continuous history that has led to where we are today. And that's why I think it's, it's a, the report itself is a, is an eye opener. And even, and, and not only out of, you should not read it out of curiosity, because if you are going to care for these patients, you have a duty to know, uh,


[00:51:19] Ben: to know that.


[00:51:19] Ben: So, yeah, I wanted, I wanted to


[00:51:21] Janelle: Um, and then we live in


[00:51:22] Janelle: a time in our country where


[00:51:25] Janelle: there are some states that are saying learning our nation's history, our


[00:51:28] Janelle: true history is not appropriate. You can't teach my child that. So I would say that you're not alone, Ben, and not, I'm not knowing a lot about American Indian history in particular, because that is something I encounter because I have a whole other presentation where I educate people and help them understand this context.


[00:51:46] Janelle: For understanding health outcomes among native people and, and it's a surprise every time


[00:51:52] Ben: Yeah.


[00:51:53] Ed: And I want to get back to what Daphna asked about, you know, what can individuals do? So two, two


[00:51:57] Ed: points with that. I've been in health care [00:52:00] long enough.


[00:52:00] Ed: You mentioned that, that it's turning in more into a business. So most physicians are really discouraged, uh, clinicians are discouraged with what's happening and it's not meeting their expectations.


[00:52:10] Ed: I'm finding that the people who actually spend, the clinicians who actually do some public health work actually have more satisfaction in their work. So get engaged in the community activities. Thank you. Policymaking, you know, in other things,


[00:52:24] Ed: in addition to the clinical point. The other thing that very specifically has changed your view from portrait view to landscape view,


[00:52:32] Ed: and, you know, look using the zoom terms, you know.


[00:52:35] Ed: If you just look at the portrait view, you get a different picture. We need a landscape view on, on our, on our clinical work and our, and that


[00:52:42] Ed: includes some of the community issues. So


[00:52:45] Ed: it is a way of looking at the world that I think they need to do, recognizing that more and more is going to go into the business aspects because that's the way healthcare


[00:52:54] Ed: has become a big business.


[00:52:55] Ed: So if they're going to maintain their sanity, they have to get involved upstream with some of


[00:52:58] Ed: the community oriented. [00:53:00] And that means they're more


[00:53:01] Ed: important now than ever. into these social issues, uh, that really


[00:53:06] Ed: impact health.


[00:53:07] Ben: Like our radiologists say. A second view on x ray gives you better perspective


[00:53:13] Daphna: That's right. That's right. Thank you. I, I just wanted to ask, you know, as advocates for the community, for people, um, who want to learn more, who want to make their facilities and their units and their offices a more welcoming place since what I'm hearing is there's


[00:53:31] Daphna: likely A lot of mistrust and frustration and anger, um, in the community.


[00:53:37] Daphna: What are some, uh, maybe some resources for people


[00:53:41] Daphna: to take a look at in addition to the report?


[00:53:43] Ed: First of all, who do they hire? Who do they have on their committees? You know, that's, who's around the table is


[00:53:51] Ed: really important. So look at HR, you know, who are you hiring? And what are you, what are you evaluating in terms of your impact in the [00:54:00] community? Um, and then for the resources, I think there's, An incredible number of resources that are out there, but we've no people have not read them. They've not paid attention to them. You know, we need to advocate the, the, the issue related to the Indian health service. It's been known for a long time, but no action has been taken. So we need to talk to our legislators to say, put some resources into this and let's, let's make some changes.


[00:54:23] Ben: my last question for you guys is is a tech related one and I feel like circling back to some of the things that we've discussed at the beginning of this episode talking about how people Identify themselves how complex that can be. I am wondering if you are all looking at artificial intelligence and potentially um, it's it's potential use when it comes to the ability to handle complex data As something that could be an outlet to provide not all the solutions obviously, but part of the solution and while I understand that Um, and and while we understand that ai is is is the way we think about it today [00:55:00] Are trained models and and how we train the model really is critical in making sure the biases are not Continued over time. I'm just wondering if you're looking at the ability of ai to handle complex data as a potential outlet for Helping move the needle forward on this issue


[00:55:16] Ed: Well,


[00:55:16] Ben: Janelle, you were, you were, you were, you were,


[00:55:18] Ben: smiling. I'm curious to hear what you think


[00:55:20] Ed: yeah, I'm going to, I think this is what a huge risk. Because AI only uses the data that's already out there. I mean, I asked some, you know, chat GPT to do some stuff and they said, I don't have access to those data. Our racist system has kept American Indians and Alaska Natives out of the literature. And so, AI has no way of pulling that that


[00:55:43] Ben: Right. But, but we could train, we could, we could, we could provide the data sets to the artificial intelligence models to train them. And I'm wondering, with that information, if we were the agents that trained AI to, to, to look at the data that we have available, could that provide, uh, [00:56:00] potential, potential hope for the future?


[00:56:02] Ed: well, we would have to train it to deal with the context, not just the data, because we, we don't have the data historically. We've ignored those data. Moving forward, yes, we do need to have those data, and that'll, that'll be helpful. So we need to train AI to actually understand the context in the, and that's going to be really difficult.


[00:56:20] Ed: Uh, because who's, who's programming those things? My guess is that there aren't a whole American, a lot of American Indians, Alaskan natives around there trying to develop the, the, the criteria for AI. Um, I, I have some real concerns about how that's going to look.


[00:56:35] Janelle: I, I would echo that just it. Yes, it is. It is all about the trainer. It is the, the people who are manipulating the outputs and what is. How, uh, AI is learning something. So then there at least has to be a discussion about collaboration or partnership, not even collaboration. It has to be like a 50, 50 partnership, um, which there's a movement in research, right, of trying to engage communities and collaborate [00:57:00] with communities because it's again, building trust.


[00:57:02] Janelle: So then with AI probably would, it would probably improve AI to have partnership, true partnership. of communities building that, not just some, you know, someone in an office deciding, Oh, this is really important because think of this. What if we had the ability to a patient, we have a patient list that we're going to see today.


[00:57:25] Janelle: And our patient list tells us and gives a, um, a score, a risk score, right. Based on all this AI technology and information, which could be pulling. Even GIS information from that patient's phone, right? Like it could be pulling a lot of information. So, um, and, and maybe this patient, um, you know, has, has poor health is smoking, um, you know, is, uh, living in this, uh, uh, lower, uh, socioeconomic, uh, community.


[00:57:57] Janelle: Um, so like all these risk [00:58:00] factors, all these risks are piling up. So then you have this and you have this patient profile and you're like, Oh, it's. is likely going to change, right? For good or for worse, how a provider could possibly interact with someone that has this information from AI, right? So, the AI part, Is there still going to be that personal human connection?


[00:58:22] Janelle: And if we become a business health care system, where time is money and we have limited time to spend with people. We have limited time getting to know their context, getting to know them, getting to know their story. And if we turn to AI as one of the, the gospel ways of trying to articulate someone's risk and what we need to be talking to them about or be careful about.


[00:58:46] Janelle: It takes. It complicates that ability to be


[00:58:50] Janelle: in that moment with that person and give them the time that they actually could need. Right.


[00:58:56] Ben: Mm-hmm.


[00:58:56] Lily: But AI uses the predominant [00:59:00] information. I think that there's tremendous potential in AI in terms of how to process and handle information, but that's out there. And, um, one of the things I've learned as I've moved across the country is that, um, the stories about the, uh, American Indians and Alaska natives are. Often hidden, you know, you and I, one of the pieces of advice I have for every pediatrician, um, every one of my friends is be curious, you know, ask, why is there an Indian school road in every southwest city? You know, what happened during the relocation during the war in Alaska, because those. I didn't hear about those until I was there talking to people who experienced them.


[00:59:47] Janelle: One last thing, which is a new thing, and that's, you know, Ed brought up sovereignty, tribal sovereignty, and that also is conferred to data sovereignty, the ability to community or tribe to own their [01:00:00] data. And so because of the mistrust because of past communities being ostracized economically, even. Because of health outcomes or research that has come out of their community, there has been this Movement towards ownership of communities taking over their data and not sharing their data like they don't want their data shared. They don't want their blood samples kept. They don't want their high rates


[01:00:26] Janelle: of congenital syphilis amongst their infants known, right?


[01:00:30] Janelle: Like they don't, there's certain parts that they don't want because that is private to them because it has impact on them as a community, economic impact. Um, yeah. So I'm also going to leave you with that, which is another piece of this puzzle, which is new to many people.


[01:00:50] Daphna: Well, we have tons more questions that we were, are not able to get to, but I, I definitely, for people who want to join you in your advocacy and [01:01:00] legislative efforts, how can they get involved?


[01:01:04] Lily: Well, the AAP has an amazing, robust advocacy network. And as Ed mentioned, being involved in public health is, um, rejuvenating. And, um, it's very fulfilling. And being involved in advocacy, learning these stories, making sure that the data and the people are included in the considerations for where we should allocate our resources.


[01:01:29] Lily: Um, being, uh, an engaged member of your community, um, is. It's good for you. It's good for your soul. Um, but I would just, um, send people to the AAP. The AAP is actually one of the really important voices in saying we need to get away from these race based algorithms so that we treat everybody, you know, we're race aware, but we don't.


[01:01:57] Lily: Uh, allocate our time and our resources [01:02:00] according to some formula that may not take everything into consideration and as, as we've talked about, importantly, may not take context and, um, including the social determinants of, of our health, uh, into consideration enough.


[01:02:20] Ed: Just a couple of specific things. You can join your local public health association. Every state has a public health association. So, and they're, it's cheap to get into, but that gives you a different context. Also, you know, many providers are no longer part of organized medicine, but if you are, if you can join your state health association, your medical association, actually, you can start to change the conversation.


[01:02:43] Ed: And most medical associations are now starting to say, we need to look at the social condition and equity is a huge issue. So being at those conversations, uh, need to be part of it. Uh, you know, mentoring, getting involved with students. I'm impressed with the fact that. Students that are coming on board now, you know, [01:03:00] into practice are much more response are socially conscious and I really focusing on social justice issues.


[01:03:07] Ed: First of all, we need to maintain that focus and also learn some of the things from these, these new groups coming on new individuals command. So get involved in some of the mentoring. You'll learn a whole lot. Uh, and then as Lily said, just be curious, why is all of this happening? What's the background of this?


[01:03:23] Ed: And as Ben, you mentioned that, you know, this, the history, it is not something in the past. It, history is a live thing. It's informing what happens today. So people just need to read a whole lot more, expand the, you know, get away from the New England Journal of Medicine and actually read some of this, the stories that are coming out of people in your own community.


[01:03:42] Lily: One other thing that Ed mentioned is to get involved in public health and we have two pediatricians in Congress now But you don't have to do it on that scale. You can You can be involved in your local community. You can serve on an advisory committee at in the [01:04:00] state's health Department You can be on a community committee. You can work with the March of Dimes in your community So I think people it's important for people to recognize The expertise and the perspective they have as health care providers and engage and share that knowledge and step up and let your voice be heard.


[01:04:24] Janelle: I would advocate that if you're more clinically oriented, let's say, um, You know, infants like newborn infants, um, that maybe you'd look for connections in the community. So you, you try to make connections to the local doula community, whether it's the American Indian Alaska native, um, focused doula community or, um, midwifery community, or if it's, it's, if it's a different population, but really try to make connections with the birth workers in the community that are trying to actually bridge that The, the work that goes on in [01:05:00] helping people that are coming from different socioeconomic groups that have, uh, different kinds of hurdles to live through, but have a good pregnancy, have a good experience during their labor and delivery and have a great outcome for mother and baby.


[01:05:16] Ed: Yeah, and your health systems actually pay for that care. Here in Minnesota we actually increase the payment for doulas, you know, to 1, 500 per delivery and 120 per prenatal visit, where doula can actually be a, a profession that actually pays enough that you can live on it. So get your systems to pay for doula care.


[01:05:37] Ben: that's that's great. That's great. I think I think we we will we will leave people with that message. Uh, dr Lou, dr. Ellinger. Dr. Palacios. Thank you so much for making the time to


[01:05:46] Ben: chat with us. Uh this morning We will uh link all the resources that we mentioned in the episode on the episode page on the website Of the incubator and we'll leave some contact info for people who are interested [01:06:00] in uh, getting involved so that they can get in touch with you all and and and uh, and be part of this of this positive


[01:06:06] Lily: Thanks for paying


[01:06:07] Ben: so thank you all for for being with us today and and we wish you the best.


[01:06:11] Ed: Thank you for your time.


[01:06:14] Janelle: Thank you.


[01:06:15] Ben: You're welcome[01:07:00]




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