by Camelia Singletary, MPH

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“[W]hen we work with an individual tribe or clinic, we plan together with them, not only how we will collect the data but how we’ll interpret the data. And we will work with them to develop their own capacity to collect data in their own way and how they will want to use that data that is meaningful to them.”

Tribal Epidemiology Centers (TECs) were first established in 1996 by the Indian Health Service (IHS) to improve disease surveillance, infrastructure, and public health data for the American Indian/Alaska Native (AI/AN) population. Today, there are twelve TECs whose common mission is “to improve the health status of American Indians and Alaska Natives by identification and understanding of health risks and inequities, strengthening public health capacity, and assisting in disease prevention and control.” 

The Journal of Public Health Management and Practice has just released a special supplement focusing on the work of TECs titled Tribal Epidemiology Centers: Advancing Public Health in Indian Country for Over 20 years.                            Tribal Epidemiology Cresci James

I spoke with Vanesscia Cresci and Rosalina James, the authors of a new editorial in the supplement, “The Role of Tribal Epidemiology Centers in Serving the Public Health Needs of American Indians and Alaska Natives.”                                                        Tribal Epidemiology Cresci James

Vanesscia Cresci, MSW, MPA, an enrolled member of the Navajo Nation, is the Director of Research and Public Health Department for the California Rural Indian Health Board, Inc (CRIHB) in Roseville, CA.  CRIHB is a network of 18 Tribal Health Programs serving 58 Tribes, which are controlled and sanctioned by Indian people and their Tribal governments. In her role, Ms. Cresci oversees public health, behavioral health, and the California Tribal Epidemiology Center whose mission is to improve American Indian and Alaska Native health in California to the highest level by engaging Tribal communities in collecting and interpreting health information to establish health priorities, monitoring health status, and developing effective public health services that respect cultural values and traditions of the communities. Ms. Cresci was born in Shiprock, NM, and grew up in New Mexico, Utah, and Arizona.

Rose James, PhD, serves as Director of Evaluation and Research at Urban Indian Health Institute (UIHI). In addition to being a division of Seattle Indian Health Board, UIHI is one of 12 Tribal Epidemiology Centers and the only one that serves Urban Indian Health Programs nationwide. Dr. James oversees health program evaluation, several research efforts, and provides qualitative and quantitative data collection, analysis, and reporting support to tribal and urban Indian organizations. She designs and conducts trainings, workshops, and consultation that center data collection and utility through evaluation and research around core indigenous values and practices. In this respect, Dr. James supports UIHI’s commitment to decolonizing data by ensuring that it is accurate and accessible for partners, providers, policy makers, and health advocates, and is informed by the people who know the health needs best—Native people.                                          Tribal Epidemiology Cresci James

In the following podcast, the authors outline the role of Tribal Epidemiology Centers in improving the health of native communities and offer highlights of the research published in their new supplement.

Read the transcript below:

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JPHMP Direct: As you point out in your article, reliable health data are central to community planning and resource allocation. Can you describe how health data has been collected and interpreted in American Indian and Alaska Native (AI/AN) communities and the challenges it’s presented?

Dr. James: In order to address that topic, I think it’s important to put into context the history of the exploitation and abuse that has been associated with American Indian and Alaska Native communities in research or other data-led efforts such as evaluation. There’ve been a number of policies and events in history that have affected how our communities feel about inviting outsiders in to collect data and utilize it for the improvement of health or public health services. For example, the US Public Health Service conducted uranium experiments with Navajo miners to learn how radon affects health outcomes. These types of events have happened in nearly every community that I’ve interacted with across the nation and they’re part of the communal memory that is really feeding the need for addressing the mistrust around data collection and surveillance. So as tribal and urban Indian-serving organizations, we continually work to build trust with our communities, recognizing the value of indigenous knowledge and understanding health needs, and having those ancient teachings to claim those traditional ways that made us healthy for so long for centuries. So this poses special challenges to collecting quality data, and tribal epidemiology centers are in a position to build and maintain that trust with the communities that we serve in a way that brings the communities into the data processes, including data collection and surveillance so that they may utilize the information we provide.   Tribal Epidemiology Cresci James 

Ms. Cresci: Well, the question that you also raise about how it’s collected… most of the data that has been collected in California, specifically, and I think it’s probably also across tribal communities, is that most of the data is collected in person. So, in California, when we work with an individual tribe or clinic, we plan together with them, not only how we will collect the data but how we’ll interpret the data. And we will work with them to develop their own capacity to collect data in their own way and how they will want to use that data that is meaningful to them.                                Tribal Epidemiology Cresci James

JPHMP Direct: As a result of misclassification and underreporting, Tribal Epidemiology Centers were created nationwide to improve public health infrastructure and address the lack of adequate disease surveillance and public health data for the AI/AN population. Can you give us a brief history of the TECs

Ms. Cresci: Yes. So back in 1996, there were actually four Tribal Epidemiology Centers that were created as a result of the passage of the Indian Healthcare Improvement Act. And these four epi centers were the Inter Tribal Council of Arizona, Northwest Portland Area Indian Health Board, the Great Lakes (Intertribal Epidemiology Center), and Alaska TECs. So they were the first four that were developed. A few years afterward, the Urban Indian Health Institute joined, and they’re located in Washington, in Seattle. Then in 2003, the Great Plains TEC joined. Then a couple years later, three TECs joined, and they are the Navajo TEC (they serve the Navajo service area), the California Epidemiology Center, which I’m a part of, and the Oklahoma TEC. And then last, in 2006, were the Albuquerque, the Rocky Mountain, and USET (the United South and Eastern Tribes). Then in 2015, all the TECs came together and jointly agreed to create the Tribal Epidemiology Center Consortium where we work together to identify priorities, work that we can work on as a whole to move forward public health infrastructure and improvements for tribal communities.                                                Tribal Epidemiology Cresci James

“TECs have an important role to play in humanizing this data. These are not just data points. These are not just data bases. Every single number, every single statistic, that we produce or qualitative data that we collect, are the stories of our people. It’s a mother. It’s a grandmother. It’s a tribal leader. It’s somebody who’s going to be a visionary for our communities in bringing us back to the health and wellness we once had. “

JPHMP Direct: Today, there are 12 Tribal Epi Centers, funded by the Indian Health Service (IHS) and Centers for Disease Control and Prevention (CDC) to conduct 7 core functions. Can you tell us about the mission and core functions of TECs?        Podcast Nash Redwood Tribal

Ms. Cresci: Yes. So the primary mission of the epidemiology centers are to improve the health status of American Indians and Alaska Natives by identifying and having a better understanding of what their health risks and inequities are, strengthening public health capacity, not only within the TECs but also with the tribes, and also assisting the tribes with disease prevention and control. We do that through the seven core functions, and each of the epi centers all do it in different ways. 

JPHMP Direct: Do the TECs work independently of one another? 

Ms. Cresci: Yes, they do. They do work independently of one another and they are housed within a parent tribal health board, and they have their own ways of implementing the seven core functions. But we do collaborate on a number of them. So, for example, one tribal epidemiology center could really do a lot around emergency preparedness and host an annual summit for their tribes, and another one may not but do more hands-on work within their tribal communities to help them prepare for an emergency.

Dr. James: Yeah, I’d say that we certainly support each other’s capacities to reach American Indians / Alaska Natives on and off reservations. A good majority of American Indians / Alaska Natives reside in metropolitan areas or outside of reservations, and public health doesn’t stop at those borders as people move on and off reservations to urban areas for things like employment or education. So we certainly strive to make these services and the quality of the data that we provide reflect native people wherever they are. And that includes things like cross-trainings. We’ve attended trainings that were up in Alaska, for example, around program management. And at the Urban Indian Health Institute, we’ve provided trainings around ripple-effect mapping evaluation to better understand how “Train the Trainers” improve public health and improve healthy behavior and lifestyles as they are implemented in the community and shared with others in the community. So, in those ways, both formal and informal, I’d say the TECs work together.                                            Tribal Epidemiology Cresci James

[bctt tweet=”Authors outline the role of Tribal Epidemiology Centers in improving the #health of American Indian and Alaska Native communities and offer highlights of the research published in a new supplement issue @JPHMPDirect.” username=”JPHMPDirect”]

JPHMP Direct: What types of programs and services do they provide their communities?        

Dr. James: Well, we certainly provide a number of services through technical assistance. For us, with urban programs, over 60 of them across the country that Urban Indian Health Institute serves, we support things like if they are writing a grant and they’d like to develop their evaluation section to provide more scientific and cultural rigor, we sit on the phone with them or sometimes have in-person meetings at the Urban Indian Health Program. We also provide data request services, where, again, if they’re writing a grant or if they just want to know about the heart disease incidence in their service area, we respond to them within a few days of that with that data request. 

JPHMP Direct: Can you tell us about some of the research readers will find in this special supplement?

Dr. James: Yes. There’s such a variety of work that the Tribal Epidemiology Centers are doing across the country. A number of ways can describe the content of the supplement, including partnerships with federal and state governments to improve the health of American Indian and Alaska Native communities. We have a paper in the supplement that describes the development of Healthy Alaskans 2020, which is a tribal-state partnership to develop a statewide health improvement plan. There are also public health issues of special concern to American Indian / Alaska Native groups… topics such as cigarette use in different populations, accidental deaths in the Midwest, colorectal cancer risk factors and diagnosis, and the forgotten danger of deaths due to influenza. There are also topics that characterize the burden of unintentional injury mortality of the  American Indians / Alaska Natives in Michigan, Minnesota, and Wisconsin, where they identify top risk factors for unintentional injury mortality, such as poisoning, that are modifiable, and provide a foundational, thorough, rigorous report on the surveillance for tribal leadership and public health agencies to address preventable deaths through additional resources, effective programming, and infrastructure improvements, for example.  

“[This supplement] is a nice compilation of our capacity and passion in the form of everything from linkage projects and epidemiology and statistical work in surveillance to community engagement and the whole process of public health and how that gets done through the methods of including your community members and valuing the knowledge that they bring to everything from survey design to development and collection of data.”

Ms. Cresci: What Dr. James just shared does show that you can see the diversity and breadth of work that these TECs conduct.  And it’s always going to be in partnership with our tribes, too. This diversity is also not only due to the diversity across the United States but also within each state. So these articles demonstrate that diversity. 

JPHMP Direct: What do you hope to gain from publishing this supplement?

Dr. James: Well, TECs play a critical role in making visible the public health needs of our populations. I really want to emphasize that as Ms. Cresci commented on, TECs have an important role to play in humanizing this data. These are not just data points. These are not just data bases. Every single number, every single statistic, that we produce or qualitative data that we collect, are the stories of our people. It’s a mother. It’s a grandmother. It’s a tribal leader. It’s somebody who’s going to be a visionary for our communities in bringing us back to the health and wellness we once had. So if we really have an investment in the communities, it drives our work. The data itself is not the goal. It’s improving the health of our communities. 

Ms. Cresci: Yes. Many of the Tribal Epidemiology Centers do employ tribal community members, so we are showcasing work that is actually being conducted by tribal community members. I just want to emphasize and show that we can do our own research and evaluation studies and that it’s important that tribal communities are a part of that work. And I think a lot of these articles show that, and I hope that readers will see that as well. 

JPHMP Direct: Would you like to add anything else?

Dr. James: I’d add one thing… Tribal Epidemiology Centers are also an important source for workforce development and have an investment in increasing the number of American Indian / Alaska Native professionals in public health and health.

JPHMP Direct: Thank you both for doing your part to make sure that these underserved communities are getting the attention they need and getting the data that’s needed to perform the best disease surveillance possible. Are there any other particular articles that you would like to recommend specifically in the supplement?

Dr. James: I think it’s a nice compilation of our capacity and passion in the form of everything from linkage projects and epidemiology and statistical work in surveillance to community engagement and the whole process of public health and how that gets done through the methods of including your community members and valuing the knowledge that they bring to everything from survey design to development and collection of data.

Read More:

• Tribal Epidemiology Centers: Advancing Public Health in Indian Country for Over 20 Years
• The Role of Tribal Epidemiology Centers in Serving the Public Health Needs of American Indians and Alaska Natives
• CDC Partnerships With Tribal Epidemiology Centers to Improve the Health of American Indian and Alaska Native Communities
• Effect Modification of the Association Between Race and Stage at Colorectal Cancer Diagnosis by Socioeconomic Status
• Racial Misclassification in Mortality Records Among American Indians/Alaska Natives in Oklahoma From 1991 to 2015

• Tribal Epidemiology Centers – Special Supplement
• Investigating Risk Factors for Colorectal Cancer: Podcast with Drs. Sarah Nash and Diana Redwood

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Camelia Singletary, MPH, received her master’s degree in public health from the University of South Carolina in 2015. Her research interests include exploring the implementation of school physical activity programs in combination with nutritional components. She is also interested in analyzing the adoption of physical activity and healthy eating skills from a social-cognitive perspective.