26th Biannual 

CDC/ATSDR Tribal Advisory Committee 

Meeting 

Follow-Up Report

September 6-7, 2023
2

Table of Contents

Introduction ...................................................................................................................................................3

TAC Business..................................................................................................................................................4

Recruitment Process..................................................................................................................................4

2024 Biannual Tribal Advisory Committee Meeting Planning...................................................................4

CDC Budget Update .......................................................................................................................................5

Equitable Access to Funding ......................................................................................................................5

Indigenous Tribal Ecological Knowledge Presentation..................................................................................6

Site Visits and Cultural Engagement:.........................................................................................................6

Support for Traditional Healing and Medicine: .........................................................................................7

Comprehensive Research to Measure Impact ..........................................................................................7

Data Modernization Pilot...........................................................................................................................8

Data Guidelines..........................................................................................................................................8

Technical Support to Tribes.......................................................................................................................9

American Indian and Alaska Native Worker Safety and Health Steering Committee.................................10

Tribal Gaming Enterprises........................................................................................................................10

Tailor Safety Initiatives ............................................................................................................................10

Exploring CDC’s Evaluation Approaches......................................................................................................10

Incorporate Tribal Evaluation Framework...............................................................................................10

Progress Update on Indigenous Evaluation Toolkit - 25th Biannual Meeting Follow-Up...........................11

Promotion of Indigenous Toolkit.............................................................................................................11

Support for Tribal Public Health Initiatives..................................................................................................12

Enhancing Reviews and Surveillance to Eliminate Maternal Mortality (ERASE MM).................................12

Maternal Mortality Data..........................................................................................................................12

Data Sovereignty and Privacy ..................................................................................................................14

Appendix ......................................................................................................................................................15

Acronym List ............................................................................................................................................15
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Introduction

The 26th Biannual Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease 

Registry (CDC/ATSDR) Tribal Advisory Committee (TAC) meeting hosted by Oneida Nation was held inperson and virtually on September 6-7, 2023, in Green Bay, Wisconsin. 

The first day began with a virtual greeting from Dr. Nirav D. Shah, CDC/ATSDR Principal Deputy Director. 

During day one, the TAC reviewed language in the charter around the nomination process, reviewed and 

voted on the Rules of Order (a complement to the TAC charter), and planned for hybrid meetings in 

2024. CDC/ATSDR provided a budget update followed by a discussion with TAC members. The day also 

featured a cultural enrichment activity with site visitations to various Oneida Nation facilities, including 

the Oneida Community Health Center, the Tsyunhehkwa Agriculture Program, the Oneida Orchard, 

Amelia Cornelius Culture Park, and other Oneida Nation facilities. 

On the second day, CDC/ATSDR subject matter experts presented on TAC priority topics. The sessions 

covered topics such as Indigenous Tribal Ecological Knowledge, improving access to data with Electronic 

Case Reporting (eCR), the American Indian and Alaska Native (AI/AN) Worker Safety and Health Steering 

Committee, and updates on CDC/ATSDR's evaluation approaches. In the afternoon, CDC/ATSDR 

presented a progress update on the Indigenous Evaluation Toolkit. The day ended with a discussion on 

maternal mortality prevention, focusing on the need to expand tribal voices in maternal mortality 

review committees and the Enhancing Reviews and Surveillance to Eliminate Maternal Mortality (ERASE 

MM) initiative. 

During the meeting, TAC members provided recommendations and requests for some areas of follow-up 

from agency leaders across CDC centers, institutes, and offices (CIOs). After the meeting, staff members 

from CDC’s National Center for State, Tribal, Local, and Territorial Public Health Infrastructure and 

Workforce, Office of Tribal Affairs and Strategic Alliances (OTASA) collected, categorized, and tracked 

follow-up items using the following categories: “request,” “recommendation,” or “question,” and asked 

the applicable CDC CIOs to respond as needed. The report is organized by agenda topic area, with the

TAC member input or questions received in each area followed by the applicable CIOs’ responses.

For additional information about the meeting, please view the 26th Biannual CDC/ATSDR TAC Meeting 

Minutes on the CDC Tribal Health website.
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Requests/Recommendations/Questions

TAC Business

Recruitment Process

Request

As part of the nomination process, TAC members requested that all official documents from the tribal 

council, including resolutions, be accepted as valid nomination materials when presented.

Response 

National Center for State, Tribal, Local, and Territorial Public Health Infrastructure and 

Workforce (Public Health Infrastructure Center) – OTASA

The discussion concluded with a vote to approve the inclusion of all documents from a 

nominee's corresponding tribe, leading to the update of the TAC Charter.

2024 Biannual Tribal Advisory Committee Meeting Planning

Request 

TAC Member requested for official follow-up with the Substance Abuse and Mental Health Services 

Administration (SAMHSA) to confirm interest in collaborating for the 27th biannual meeting at CDC. 

Response

Public Health Infrastructure Center – OTASA

The 27th Biannual TAC Meeting is scheduled for February 21–22, 2024, at the CDC/ATSDR 

Headquarters in Atlanta, GA. The OTASA team has actively initiated discussions with SAMHSA's 

team. Although confirmation was received that SAMHSA is open to exploring collaboration in 

the future, it is currently deferred due to competing priorities.

Request 

As part of the biannual meeting planning process, TAC members were given the opportunity to host the 

28th biannual meeting to hold the event in Indian Country.

Response

Public Health Infrastructure Center – OTASA

Following a thorough review of available options, the TAC made a collective decision to host the 

28th Biannual meeting in Indian Country on August 7-8, 2024, specifically on Cow Creek lands. 

Dr. Sharon Stanphill, a National At-Large Tribal Member, has been appointed as the TAC 

Delegate lead for this meeting.

 
5

 

CDC Budget Update

Equitable Access to Funding

Recommendation

TAC members recommended that CDC implement a more equitable funding process and work to 

provide direct funding to tribes. 

Response

Public Health Infrastructure Center – OTASA

CDC is considering this recommendation. Under the advisement of the CDC/ATSDR TAC, the CDC 

will continue to explore better ways to provide resources and other CDC support for tribal public 

health more efficiently. The newly formed CDC Grants Governance Board held a tribal listening 

session in December 2023 to improve the administration of grants and recommend agency-wide

solutions to identified issues, including reducing administrative burdens.

Recommendation

Many tribes have voiced support for a tribal set aside across all agency funding. TAC members asked 

whether the CDC would commit to policy changes to enact a 10% set aside that establishes flexibility for 

tribes so that they can address health inequities.

Response

Public Health Infrastructure Center – OTASA

Intramural funding is spent on basic operational functions for the agency (e.g., salaries, benefits, 

rent, utilities, office supplies, management and administrative activities, and programs and 

services directly provided by CDC). CDC strives to maximize its extramural investments as much 

as possible; most CDC funding is provided to the field, and direct funding to tribal nations for 

tribal public health has increased in recent years.

There are two primary conditions affecting the ability to enact a 10% set aside. One of the 

conditions is CDC’s budget and appropriations language that dictates how funds may be 

distributed. CDC’s current budget structure—which is primarily based on disease or public 

health issue areas and not specific populations—is directed by Congress. Secondly, CDC’s budget 

does not work in isolation. It is a part of the Health and Human Services (HHS) budget. For 

example, the CDC received COVID-19 funds to address social determinants of health and there 

was a specific appropriation that went to the Indian Health Service (IHS). There was a specific 

direction from the appropriators and HHS that separated the funds and dictated how they were 

portioned. 

Request

TAC members voiced their discontent over the fact that none of the $3.6 billion allocated by the CDC for 

public health infrastructure reached tribal nations. They are urging the Department of Health and 
6

Human Services (HHS) to advocate for legislative changes that ensure tribal nations are eligible to 

receive a share of all funding allocated to other jurisdictions, like states. Additionally, they call on the 

CDC to utilize its administrative authority to mandate that states collaborate with tribal nations in the 

implementation of all funding initiatives.

Response

Public Health Infrastructure Center – OTASA

CDC acknowledges the need to build infrastructure and capacity in Indian Country. Through 

Congress’ Public Health Infrastructure and Capacity Appropriation, CDC prioritized awarding 

funds directly to tribes and tribal organizations under CDC-RFA-TO-23-0001: Strengthening 

Public Health Systems and Services in Indian Country —to help improve public health outcomes 

and lessen health inequities in Indian Country. This program continues the CDC’s commitment 

to tribal health. As of October 2023, CDC has provided nearly $26 million to 26 federally 

recognized American Indian and Alaska Native (AI/AN) tribes and regional AI/AN tribally 

designated organizations to improve tribal public health infrastructure and services to tribal 

communities. 

In addition, while the Public Health Infrastructure Grant, which is an opportunity to strengthen 

the nation’s public health infrastructure was awarded to over 107 state and local health 

departments, some of the departments provided suballocations to tribes. Oregon’s Public 

Health Division, for example, awarded nine federally recognized tribes and the Urban Indian 

Organization in their state, NARA, a sub-allocation totaling $4,000,000 to help strengthen their 

infrastructure and capacity. 

CDC will continue to engage tribes and tribal serving organizations (TSOs) and work 

collaboratively to identify methods and best practices to ensure they have the support needed 

to improve the public health of their communities.

Request

Engagement with Tribal Interior Budget Council (TIBC): The TAC members requested of CDC to engage 

with the TIBC, which oversees the budgets for 12 regions and various Bureau programs. Collaborative 

efforts will aim to streamline processes and improve coordination between federal agencies and tribes.

Response

Public Health Infrastructure Center – OTASA

CDC will remain engaged with the Tribal Interior Budget Council and will contribute to 

discussions to support AI/AN Communities. 

Indigenous Tribal Ecological Knowledge Presentation 

Site Visits and Cultural Engagement:

Request: 

Site Visits and Cultural Engagement: The CDC should continue regular site visits to tribal communities, 

emphasizing cultural engagement alongside public health assessments, and fostering understanding 

through participation in tribal events and traditions.
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Response

Public Health Infrastructure Center – OD

CDC remains committed to continuing regular site visits to tribal communities emphasizing 

cultural engagement alongside public health assessments and fostering understanding through 

participation in tribal events and traditions.

Support for Traditional Healing and Medicine:

Request:

Improving Access to Data with Electronic Case Reporting (eCR)

The CDC should explore ways to support and integrate traditional healing practices into public health 

programs, collaborating with tribal nations to ensure cultural sensitivity and respect.

Response

National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP)

The CDC acknowledges the value in this recommendation and will share it with programmatic 

leadership for consideration.

Comprehensive Research to Measure Impact 

Request:

The CDC should Share the results and success stories of these programs with other tribes to encourage 

the adoption of effective practices and interventions.

Response

National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP)

CDC’s Division of Diabetes Translation acknowledges and agrees with this suggestion of having 

comprehensive research to measure the impact of community-based health programs on 

various health outcomes in tribal communities. The Special Diabetes Program for Indians (SDPI) 

Diabetes Prevention demonstration project successfully reduced the risk for type 2 diabetes in 

participants within AI/AN communities. Indian Health Service (IHS), tribal, and urban programs 

with experience in type 2 diabetes prevention are well-positioned and encouraged to apply 

for CDC recognition to offer the CDC-led National Diabetes Prevention Program (National 

DPP) lifestyle change program for public/private insurance reimbursement and long-term 

sustainability. Sharing results and success stories from community-based health programs with 

other tribes is also critical to disseminating effective practices and interventions and preventing 

disease burden. The SDPI Diabetes Prevention Program Toolkit is a helpful resource for tribal 

and urban health programs initiating or maintaining a CDC-recognized lifestyle change 

program. The toolkit includes stories, strategies, positive outcomes, and lessons learned by the 

36 SDPI Diabetes Prevention demonstration project health care settings across 80 AI/AN tribes 

and the successes are reported in the Special Diabetes Program for Indians 2014 Report to 

Congress. Building on the longstanding efforts of the SDPI, CDC’s Division of Diabetes 

Translation aims to expand and increase access to the National DPP lifestyle change program by 

expanding venues for delivery of the program by trained Lifestyle Coaches.
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Data Modernization Pilot

Request

Include tribes in Data Modernization Pilot: Initiate discussions with tribal leaders, including those from 

the mentioned Oklahoma reservation, to assess their interest in participating in the pilot program.

Response

Office of Public Health Data, Surveillance, and Technology (OPHDT)

CDC would be happy to discuss connecting to the eCR infrastructure with any interested tribal 

public health agencies. CDC partnered with the National Indian Health Board on this project, and 

their eCR team is Sarah Price SPrice@nihb.org and Jessica Dean <JDean@nihb.org>. The NIHB 

eCR website link is National Indian Health Board | NIHB Public Health Projects.

CDC’s primary contact for the eCR Tribal Project is Sarah Sobonya qkh4@cdc.gov and the 

general eCR email address is eCR@cdc.gov . CDC’s website is Electronic Case Reporting (eCR) | 

CDC. 

eCR is a collaboration between the CDC, the Association of Public Health Laboratories (APHL), 

and the Council of State and Territorial Epidemiologists (CSTE). The APHL website, which 

includes technical requirements, is Public Health Agencies (aimsplatform.org). This webpage 

from CSTE includes a list of all the reportable conditions currently available with eCR: Conditions 

available in RCKMS – RCKMS

Data Guidelines

Request

Develop Transparent Data Guidelines: Collaborate with tribal representatives to create clear guidelines 

for data collection, storage, access, and sharing, prioritizing transparency and data security.

Response

 Office of Public Health Data, Surveillance, and Technology (OPHDT)

eCR data is currently not collected, stored, accessed, or shared by CDC. Data flows from the 

healthcare provider through the APHL AIMS platform and then to any State, Tribal, Local, or 

Territorial public health agency to which the case is reportable. Storage retention with APHL 

AIMS is 7 days to ensure delivery and for processing troubleshooting. In addition to the public 

health agencies receiving the reports, only APHL staff has access during these 7 days for 
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technical troubleshooting. OPHDT is happy to facilitate introductions or provide additional 

information about the APHL, CSTE, or HL7 groups described below.

The HIPAA privacy rule permits covered entities to disclose protected health information, 

without authorization, to public health authorities; such as tribes, who are legally authorized to 

receive such reports for the purpose of preventing or controlling disease, injury, or disability. 

(https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/disclosures-public-healthactivities/index.html). In the case of eCR, the protected health information is being presented to 

APHL AIMS via business associate agreements, or through analogous authorities to support the 

covered entity in performing appropriate public health reporting disclosures.

The data in the (electronic Initial Case Report) eICR were identified as appropriate for an alljurisdiction, all-condition case report by a task force of the Council of State and Territorial 

Epidemiologists (CSTE). The task force data are listed in chart 6.3 “Mapping of CSTE Identified 

Data Elements to the eICR Data Model” in the attached document from the HL7 standard. The 

table demonstrates how data elements identified by the CSTE task force map to the eICR Data 

Model classes and attributes. The full eICR standard can be found at

http://www.hl7.org/dstucomments/showdetail.cfm?dstuid=199

It should also be noted that “covered entities are not required to make a minimum necessary 

determination for public health disclosures that are made pursuant to an individual’s 

authorization, or for disclosures that are required by other law. See 45 CFR 164.502(b).” (also,

from https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/disclosures-public-healthactivities/index.html). The conditions included in the eCR decision support system are required 

by law to be reported in states and territories in the United States. The rules for reporting have 

been authored by the chief epidemiologist, or their representative, from the related 

governmental public health agency.

More information about the APHL AIMS platform security can be found 

at AIMSSecurityOnePager.pdf (aimsplatform.com)

Technical Support to Tribes

Request

Offer Technical Support to tribes: Establish a dedicated technical assistance team to address on-theground challenges and provide support to tribes during the data connection process.

Response

 Office of Public Health Data, Surveillance, and Technology (OPHDT)

The eCR program offers robust technical assistance both during and after the connection 

process. A tribe can express interest in their public health department receiving eCR data by 

emailing eCR@cdc.gov. The Public Health Agency Support Team will coordinate assistance from 

the APHL eCR team in understanding technical requirements and options and creating an eCR 

connection. The Public Health Agency Support Team will also coordinate assistance from CSTE 

Authoring Support Associates to support tribes in entering their reportable conditions in the 

Reportable Conditions Knowledge Management System.
10

American Indian and Alaska Native Worker Safety and Health Steering

Committee

 

Tribal Gaming Enterprises

Request

Identify and Engage Tribal Gaming Enterprises: Compile a comprehensive list of tribal gaming 

enterprises and facilitate contact with their leadership or human resources departments.

Response

National Institute for Occupational Safety and Health

NIOSH is committed to providing information and technical assistance to tribes as they work to 

improve workplace safety and health. The recently published AI/AN Strategic Plan may be useful 

to tribes as they work to achieve occupational safety and health priorities.

Tailor Safety Initiatives

Request

Promote and Tailor Safety Initiatives: Collaborate with tribal gaming and construction industries to 

develop customized safety plans, offer safety presentations, and provide ongoing support to enhance 

occupational safety and health measures.

Response

National Institute for Occupational Safety and Health

NIOSH is committed to providing information and technical assistance to tribes as they work to 

improve workplace safety and health.

Exploring CDC’s Evaluation Approaches

Incorporate Tribal Evaluation Framework

Request

Incorporate Tribal Evaluation Framework and Prioritize Diabetes Programs: Integrate the tribal 

evaluation framework into CDC practices, particularly focusing on diabetes programs, acknowledging 

the successful tribal methodologies.

Response

Office of Policy, Performance, and Evaluation

We appreciate the comment and are diligently and continuously working to improve our 

approaches. CDC programs and evaluators are committed to weaving culturally responsive and 

equitable evaluation principles and practices into their program evaluation planning and 

implementation, including successful tribal methodologies, principles, and practices identified in 

Tribal and Indigenous Evaluation Frameworks. Programs are also funding indigenous groups to 
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develop tools such as the Indigenous Evaluation Toolkit by Seven Directions, which are 

important resources to further understanding how we can apply the concepts to our practices. 

Evaluation is fundamentally about inquiry, learning, and using knowledge to improve, which is 

important to keep in mind as we recognize the many ways we can design and implement 

evaluations. The CDC Framework for Evaluation in Public Health is a practical, non-prescriptive 

tool that identifies key elements of program evaluation. It encourages using methods and 

approaches appropriate to the context, rather than specifying particular methodologies. The 

update to the framework (which is in development) will include key concepts aligned with tribal 

evaluation frameworks such as ensuring interest holders are collaboratively engaged throughout 

the evaluation, and that evaluation can and should promote health equity through how it is 

performed and how results are used. We welcome any additional thoughts and suggestions 

about how we can continue to improve our evaluation practices.

Progress Update on Indigenous Evaluation Toolkit - 25th Biannual 

Meeting Follow-Up

Promotion of Indigenous Toolkit

Request

Promotion of Indigenous Toolkit: Develop a comprehensive strategy to promote the Indigenous Toolkit 

for Overdose Prevention and Response through CDC channels and tribal collaborations.

Response

Division of Injury Prevention, National Center for Injury Prevention and Control

Strategic promotion for Seven Directions’ Indigenous Evaluation Toolkit has been ongoing since 

its release in February 2023. Communication channels include

• Social media: Facebook, Twitter (now X), Instagram

• Seven Directions’ website

• Podcast: Indigenous Insights

• In-person training opportunity at Our Nations Our Journeys 2023

• Dissemination through tribal public health networks

o Seven Directions contacts, CDC internal and external contacts

o Opioid Tribal Advisory Group contacts

o Seven Directions’ Quarterly Gathering Grounds Overdose Prevention Tribal 

Community of Practice

o CDC 1803 Opioid Overdose Prevention funded partners (now closed)

o CDC 1802 supported technical assistance open to tribes nationally.

• Offered along with technical assistance (both virtual and in-person) from Seven Directions to 

CDC’s Division of Injury Prevention’s (DIP) newly funded tribal partners:

o Tribes and tribal organizations funded for alcohol-impaired driving, elder falls, 

overdose, and suicide prevention programs.

o Tribal Epidemiology Centers/Indian Health Boards

o CDC 1802 supported technical assistance open to tribes nationally
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Support for Tribal Public Health Initiatives

Request Support for Tribal Public Health Initiatives: Establish a dedicated CDC team for technical 

assistance and tailored resources, fostering partnerships and offering grants to address tribal 

community needs in overdose prevention.

Response

Division of Injury Prevention, National Center for Injury Prevention and Control

CDC/DIP launched the Program Implementation and Evaluation Branch’s Tribal Support Team 

(TrST) on August 1, 2023. Tribal Support Team Values include

• Respect tribal sovereignty

• Recognize tribes and Tribal Epidemiology Centers as public health authorities

• Support the inclusion of Indigenous knowledge and culture in the prevention

• Promote meaningful collaboration between CDC and tribal partners

• Incorporate an Indigenous Evaluation approach in programming serving tribal 

communities

The TrST administers and provides programmatic technical assistance to the following Tribal 

Overdose Prevention Initiatives through three supplements:

Tribal Epidemiology Center Public Health Infrastructure (TECPHI) Overdose Supplement

• $2M annually

• 10 Tribal Epidemiology Centers

Tribal Overdose Prevention Program (TOPP)

• $11.2M annually

• 16 recipients (5 tribes and 11 tribal organizations)

Strengthening Public Health Systems and Services Through National Partnerships

• Opioid Overdose Prevention in Tribes (NNPHI)

• Opioid Overdose Prevention Conf. Track (NIHB)

• Urban AIAN Overdose Needs Assessment (NCUIH)

Enhancing Reviews and Surveillance to Eliminate Maternal Mortality 

(ERASE MM)

Maternal Mortality Data

Request 

Maternal Mortality Data: Enhance the "MMRIA or Maria" data system for tribal nations, customizing 

tools for indigenous communities. Promote maternal mortality review committees in tribal areas for 

improved data collection.

Response

Division of Reproductive Health, National Center for Chronic Disease Prevention and Health

The Maternal Mortality Review Information Application (MMRIA) is the data system that houses 

data from case abstraction and committee decisions from Maternal Mortality Review 

Committees (MMRCs). It is the repository of medical and non-medical information needed for 

MMRC case review. MMRIA helps MMRCs organize the available data and keep track of where 

they are in the abstraction and review process for each death. The use of one standardized 

system for MMRC data means MMRC data are comparable across the US which will improve 
13

surveillance and better inform prevention of future deaths. While CDC centrally hosts MMRIA, 

each jurisdiction has its own secure and dedicated instance of MMRIA. CDC does not use a 

jurisdiction’s MMRIA data without their permission. Each jurisdiction controls who has access to 

the MMRIA instance and assigns roles within the system. Additionally, each jurisdiction 

completes analysis and creates data products using their MMRIA data. Tribal MMRCs could use 

MMRIA in their processes and have authority over both system access and use of their MMRC 

data. 

The Division of Reproductive Health (DRH) is engaging tribal partners in formative work to 

gather the information necessary to explore the feasibility of and build capacity to establish 

Tribal MMRCs as well as identify potential adaptions to MMRIA. DRH is partnering with tribal 

and tribal-serving partners directly and engaging them for their feedback on MMRIA. 

In November 2023, DRH partnered with the National Indian Health Board to host a convening of 

tribal partners in Santa Ana Pueblo, New Mexico. Attendees included tribal members on current 

state MMRCs, staff from regional Tribal Epidemiology Centers and Indian Health Boards, and 

other tribal-serving organizational representatives working in Maternal and Child Health. This 

convening created an opportunity to gather input and ideas on how a Maternal Mortality 

Review approach could inform maternal health promotion and maternal mortality prevention 

actions among American Indian and Alaska Native communities, including suggested changes to 

MMRIA. DRH is committed to disseminating insights, feedback, and lessons learned from this 

meeting to partners in national forums and continuing conversations at future co-hosted events 

with the National Indian Health Board and other tribal partners.

The learnings from partner experiences and expertise are informing the conceptualization and 

possible structure of Tribal MMRCs. Specifically, DRH has ongoing partnerships carrying forward 

from fiscal year 2023 funding with the Chickasaw Nation, the American Indian Health 

Commission of Washington State, the Rocky Mountain Tribal Leaders Council, and the 

Albuquerque Area Southwest Tribal Epidemiology Center. Newly funded partners in the 

upcoming fiscal year include the Southern Plains Tribal Health Board and an Indigenous Public 

Health Institute that will be identified by the National Network of Public Health Institutes. The 

DRH Maternal Mortality Prevention Team welcomes additional tribal nation collaborations; 

funding may be available via the CDC’s partnership with the CDC Foundation for additional 

partners who express interest in collaboration and engagement with DRH with a focus on 

providing feedback on how to customize MMRIA for tribal MMRC use and promote tribal 

maternal health. 

DRH is continuing to work with partners to collect formative information and feedback on the 

MMRIA data system to better understand the customization needs for use by tribal nations. The 

team will continue to promote engagements and partnership opportunities via CDC platforms 

and partner forums. We also welcome tribal nations and tribal serving organizations to contact 

us if they are interested in collaborating on this work. Please reach out to the CDC Maternal 

Mortality Prevention team at erasemm@cdc.gov, Attention: Danielle Arellano, to learn more or 

to provide feedback. For additional information about the funding available via the CDC 

Foundation specifically, please reach out to Sherry Cohen at scohen@cdcfoundation.org. 
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Data Sovereignty and Privacy

Request

Data Sovereignty and Privacy: Respect tribal sovereignty by letting tribes control data collected on their 

populations. Establish clear data-sharing protocols with tribes, with tribes having final decision-making 

power.

Response

Division of Reproductive Health, National Center for Chronic Disease Prevention and Health

The Maternal Mortality Review Information Application (MMRIA) is a data system designed to 

facilitate Maternal Mortality Review Committees (MMRC) functions through a common data 

language. CDC, in partnership with users from MMRCs and other subject matter experts, 

developed the system. CDC makes MMRIA available to all MMRCs, regardless of whether they 

are CDC-funded. The primary purpose of MMRIA is to serve as a repository of medical and nonmedical information needed for the Maternal Mortality Review Committee case review. Its 

secondary purpose is to standardize maternal mortality data collection so that it can be used for 

surveillance, monitoring, and analysis. MMRIA is centrally hosted by the CDC for jurisdictionspecific use. The data contained within MMRIA are shared with CDC through data-sharing

agreements; the jurisdictions have authority over who accesses the system and who can use the 

data. While the Division of Reproductive Health (DRH) has a template agreement that is used as 

a starting point for data sharing with MMRIA users, this template is modified to fit jurisdictional 

needs. If a tribe or tribal serving organization used MMRIA for tribally led maternal mortality 

review, the jurisdiction will have an opportunity to establish clear data-sharing protocols with 

CDC that respect data sovereignty. As part of the formative work described below, DRH is 

collecting feedback on the wording and content of the data-sharing agreement language.

There are currently no Tribal MMRCs, however deaths of American Indian and Alaska Native 

persons are included in current MMRC jurisdiction data. DRH acknowledges that Tribal MMRCs 

may need to adapt MMRC processes, and MMRIA system elements, to reflect the unique 

characteristics of tribal maternal mortality review, including adaptations to better integrate 

culturally-appropriate approaches; provide public health focused recommendations relevant to 

tribal communities made by a tribally-appointed committee to prevent pregnancy-related 

mortality among Native people; and, have direct access to their data and determine how it will 

be used and by whom. DRH is engaging tribal partners in formative work to gather the 

information necessary for building the capacity to establish Tribal MMRCs, which includes 

ownership of their MMRC data and its management in MMRIA. 

DRH is partnering with tribal and tribal-serving partners directly, engaging them for their 

feedback on data sharing agreements with CDC, and learning from their experience and 

expertise to inform the conceptualization and structure of Tribal MMRCs. Specifically, DRH has 

ongoing partnerships carrying forward from fiscal year 2023 funding with the Chickasaw Nation, 

the American Indian Health Commission of Washington State, the Rocky Mountain Tribal 

Leaders Council, and the Albuquerque Area Southwest Tribal Epidemiology Center. New 

partners with fiscal year 2023 funding include the Southern Plains Tribal Health Board and an 

Indigenous Public Health Institute that will be identified by the National Network of Public 

Health Institutes. The DRH Maternal Mortality Prevention Team welcomes additional tribal 

nation collaborations to understand how Maternal Mortality Review Committee (MMRCs) 

programmatic approaches could gather data and information needed to ensure 
15

recommendations for the prevention of future death are made that acknowledge tribal context, 

culture, and sovereignty.

Please reach out to the CDC Maternal Mortality Prevention team at erasemm@cdc.gov, 

Attention: Danielle Arellano, to learn more or to provide feedback.

Appendix 

Acronym List

AI/AN American Indian/Alaska Native

ATSDR Agency for Toxic Substances and Disease Registry

CDC Centers for Disease Control and Prevention

CEQ Council on Environmental Quality

CSTLTS Center for State, Tribal, Local, and Territorial Support

DD Developmental Disabilities

DFO Designated Federal Official

DMI

ERASE MM

Data Modernization Implementation

Enhancing Reviews and Surveillance to Eliminate Maternal Mortality 

IHS Indian Health Service

NCEH National Center for Environmental Health

NCHS National Center for Health Statistics

NCIPC National Center for Injury Prevention and Control

NIOSH The National Institute for Occupational Safety and Health (NIOSH)

OA Office of Appropriations 

OCOO Office of the Chief Operating Officer 

OD Office of the Director

OFR Office of Financial Resources

OMB Office of Management and Budget

OSHA Occupational Safety and Health Administration

OTASA Office of Tribal Affairs and Strategic Alliances

PHIC National Center for State, Tribal, Local, and Territorial Public Health Infrastructure and 

Workforce

SAMHSA Substance Abuse and Mental Health Services Administration
16

SDPI Special Diabetes Program for Indians

STAC Secretary’s Tribal Advisory Committee

TAC Tribal Advisory Committee

TEC Tribal Epidemiology Center

TECPHI Tribal Epidemiology Centers for Public Health Infrastructure

TEWG Tribal Expert Working Group