Annual Report of the 

American Indian/Alaska Native 

Health Research Advisory Council 

(HRAC) 

Fiscal Year 2013
 

TABLE OF CONTENTS

Introduction............................................................................................................................................... 1

Background ............................................................................................................................................... 1

Presidential Memoranda and Executive Orders......................................................................................................................1

Formation of the HRAC..........................................................................................................................................................2

HRAC History ........................................................................................................................................................................2

Fiscal Year 2013 Activities ....................................................................................................................... 4

HRAC Research Roundtable ..................................................................................................................................................4

Meetings..................................................................................................................................................................................5

Outreach Activities ................................................................................................................................................................. 9

Annual Health Research Report..............................................................................................................................................9

Recommendations to HHS ....................................................................................................................... 9

Tribal Epidemiology Centers’ Public Health Authority Status.............................................................................................10

National Children’s Study.....................................................................................................................................................10

National Institutes of Health Tribal Consultation Policy ......................................................................................................11

HHS Data Council ................................................................................................................................................................11

General Research Recommendations....................................................................................................................................13

Attachment A:......................................................................................................................................... 15

Member and Partner List for FY 2013 - 2014 ...................................................................................... 15

HRAC Co-Chairs..................................................................................................................................................................15

Members ...............................................................................................................................................................................16

Federal Partners ....................................................................................................................................................................19
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INTRODUCTION 

The Annual Report of the American Indian/Alaska Native Health Research Advisory Council provides 

an overview of the American Indian/Alaska Native (AI/AN) Health Research Advisory Council 

(HRAC) along with its activities and accomplishments in Fiscal Year 2013. The report includes 

summaries of the HRAC meetings, a list of outreach events, and recommendations that the HRAC

submitted to the U.S. Department of Health and Human Services (HHS). A list of current HRAC

members and Federal Partners is included as an attachment. 

BACKGROUND

OMH was established in 1986, following the release of the 1985 Report of the Secretary’s Task Force 

on Black and Minority Health. The mission of OMH is to improve the health of racial and ethnic 

minority populations through the development of health policies and programs that will help eliminate 

health disparities. OMH advises the HHS Secretary, Assistant Secretary for Health, and other 

departmental leadership and works collaboratively with other HHS Operating and Staff Divisions, 

federal agencies, and with other organizations across the country on health-related matters affecting 

AI/AN, Asian American, Black/African American, Hispanic/Latino, Native Hawaiian, and Pacific 

Islander populations. 

OMH serves as the Executive Secretariat for the HRAC. In this role, OMH is responsible for the 

administrative and fiscal operation of the HRAC, solicitation and selection of tribal delegates to the 

HRAC, and for ensuring that delegates and alternates to the HRAC meet Federal Advisory Committee 

Act (FACA) exemption's requirements.

PRESIDENTIAL MEMORANDA AND EXECUTIVE ORDERS

On April 29, 1994, President William J. Clinton issued the Government-to-Government Relationship 

with Native American Tribal Governments memorandum to executive departments and agencies. The 

memorandum reinforced the special relationship between tribal governments and the federal government 

regarding tribal consultation and sovereignty. The Domestic Policy Council (DPC) Working Group on 

Indian Affairs requested that each department develop its own operational definition of “consultation” 

with Indian tribes to meet the requirements of the Indian Self-Determination and Educational Assistance 

Act. This request, along with other DPC recommendations, ultimately led to the creation of HHS’ 

formal tribal consultation policy on August 7, 1997 – developed to strengthen the government-togovernment relationship and ensure that tribes are consulted on matters affecting them. 

A revised Executive Order (13175) was issued on November 6, 2000, by President Clinton that 

reinforced his administration’s commitment to tribal sovereignty and the unique government-togovernment relationship that exists between the United States Government and tribal governments. 

Executive Order 13175 directs agencies to establish regular and meaningful consultation and 

collaboration between tribal nations and the federal government. It directs all federal agencies to 

coordinate and consult with Indian tribal governments whose interest might be directly and substantially 

affected by activities on federally administered lands. 

In 2009, President Barack Obama issued a presidential memorandum on tribal consultation that 

reaffirmed his administration’s commitment to regular and meaningful consultation and collaboration 

with tribal officials through implementation of Executive Order 13175. As a result, HHS worked with

tribal leaders in the development of a revised tribal consultation policy. Signed in December 2010, this
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policy provided more opportunities for tribal input through the development of policies, regulations, and 

budgets. 

FORMATION OF THE HRAC

HHS solicited nominations from tribal leaders in November 2005 to develop the HRAC. The HRAC’s 

role is to facilitate communication between the Department and tribes regarding health research 

priorities and needs in AI/AN communities. Members of the Council are elected or appointed tribal

officials, and include one delegate and one alternate from each of the 12 Indian Health Service (IHS) 

areas, and four National At-Large Members. Federal partners representing HHS Operating and Staff 

Divisions also support the Council. 

The HRAC was established to fulfill three primary functions:

1. Obtain input from tribal leaders on health research priorities and needs for their communities; 

2. Provide a forum through which HHS Operating and Staff Divisions can better communicate 

and coordinate AI/AN health research activities; and

3. Provide a conduit for disseminating information to tribes about research findings from 

studies on the health of AI/AN populations. 

At the HRAC’s first meeting in 2006, the Council elected Councilwoman Cara Cowan Watts and 

President Cecilia Fire Thunder as co-chairs. The co-chairs served as the leaders and facilitators for 

several outreach events and general activities. The HRAC members participated in numerous 

conference calls to plan for and organize activities, including reviewing other HHS advisory models, 

discussing solicitation of research priorities and needs, and planning for future meetings. 

During the second meeting held in Albuquerque, New Mexico, in November 2006, the HRAC reached a 

collective agreement to focus on three objectives:

1. Establish the HRAC Charter (outlining the purpose, background, and structure of the Council 

and processes for voting, membership, and leadership); 

2. Develop a Discussion Guide (a survey to inquire about health research priorities and needs in 

Indian Country); and 

3. Establish future meeting dates.

HRAC HISTORY

From 2006 to 2012, the HRAC held quarterly conference calls and annual meetings. The topics of 

continued concern and interest included the National Children’s Study, National Institutes of Health 

(NIH) Tribal Consultation Policy, data sharing, scholarships for Native researchers, and a Native health 

research database. From these discussions, the HRAC developed and presented recommendations to

HHS through letters to the Secretary and testimony at the annual HHS National Tribal Budget and 

Policy Consultation Sessions. 

The HRAC developed a Discussion Guide to help ascertain health research priorities in Indian Country 

and constructed survey questions to examine healthcare delivery systems and research tribes were 

conducting. The HRAC members distributed the Discussion Guide to tribal leaders in their respective 

IHS areas from 2007 to 2009. During that time, the top health concerns reported (but not listed in 

priority order) were: 
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• Access to care and coordination of care;

• Behavioral health issues, including domestic violence, substance abuse, suicide, and tobacco use;

• Cancer, cardiovascular disease, diabetes, and obesity;

• Health information technology and systems;

• Lack of funding; and

• Recruitment/retention of highly qualified health care professionals/providers. 

The Discussion Guide results provided valuable information to the HRAC from the tribes’ perspective 

regarding health concerns, priorities, and the methodology by which future research should be 

conducted. 

HRAC members attended outreach events to educate and inform tribes of the HRAC’s mission and 

objectives. Events attended included the Annual Native Health Research Conference (2008, 2010, and 

2011); National Indian Health Board (NIHB) Annual Consumer Conference (2008, 2011, and 2012); 

AI/AN Health Policy Conference (2009); IHS/Health Canada Maternal and Child Health Research 

Meeting (2009); Third National Leadership Summit on Eliminating Racial and Ethnic Disparities in 

Health (2009); NIHB Public Health Summit (2010); and the HHS Regional Consultations (2011 and

2012). These events provided an opportunity for tribes to collaborate and share their knowledge and 

experiences regarding the advancement of health care research and its importance in Indian Country. 

In addition, the HRAC collaborated with the Administration for Children and Families; Agency for 

Healthcare Research and Quality (AHRQ); Assistant Secretary for Planning and Evaluation; Centers for 

Disease Control and Prevention (CDC); Health Resources and Services Administration; Indian Health 

Service (IHS); Intergovernmental and External Affairs; National Institutes of Health (NIH); Substance 

Abuse and Mental Health Services Administration (SAMHSA); Tribal Epidemiology Center (TEC) 

staff; OMH; and external researchers and scientists to advance its knowledge base of health care 

research and learn how to best provide healthcare services throughout Indian Country. 

HRAC Members at April 2009 Meeting
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FISCAL YEAR 2013 ACTIVITIES

HRAC RESEARCH ROUNDTABLE

The HRAC Research Roundtable brought together HRAC members, Native health researchers, TEC

representatives, and Federal partners to discuss research priorities in Indian Country. On November 29, 

2012, the Roundtable took place at NIH. Lieutenant Commander (LCDR) Tracy Branch, OMH, 

welcomed attendees and introduced Stephen Kutz, HRAC Co-Chair, and Commander (CDR) Jacqueline 

D. Rodrigue, Deputy Director, OMH. Councilman Kutz welcomed the attendees and thanked the 

participants, then began the meeting with a traditional prayer and prayer song from the Cowlitz Indian 

Tribe. 

Dr. Joyce Hunter, Deputy Director of the National Institute on Minority Health and Health Disparities, 

also welcomed the attendees and shared updates on the NIH Guidance on the Implementation of the 

HHS Tribal Consultation Policy that the 27 institutes and centers must follow. 

Meeting attendees heard a background presentation about the HRAC, including its history, priorities, 

and current activities. 

Carolyn Aoyama, Native American Research Centers for Health (NARCH) Director, facilitated a 

discussion with participants regarding evaluating the NARCH program with a focus on measuring trust 

that included trust between tribal leaders and research partners.

Dr. Shilpa Amin spoke on behalf of AHRQ’s Effective Health Care Program and followed up on a 

presentation she conducted during the Annual HRAC Meeting in September 2012 by providing more 

details on the patient-centered outcomes research (PCOR) process. She noted that the HRAC had been 

discussing research priorities on such broad health areas as cancer and diabetes. She also provided a 

PCOR Process Tree that the HRAC could consider to identify specific research topics and ultimately 

develop a written plan of research recommendations. Lastly, she shared a summary of proposed tasks 

for developing a PCOR plan. 

Throughout the Roundtable, the HRAC members solicited recommendations and comments from 

participants for the HRAC and its Federal partners to consider. Research topics recommended by 

attendees included: 

• Links among human health, human wellness, and environmental health;

• Multiple morbidities, such as the connection among oral health, cancer, and diabetes;

• Food security, including access to food and how climate change affects that access;

• Cancer;

• Motor vehicle fatalities;

• Oral health;

• Alzheimer’s disease; and

• Historical trauma.

Other recommendations included: 

• Support for accreditation, research, and development of standards for health service agencies; 
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• Respect sovereign rights of tribes when biological samples from tribal members are involved in 

research; 

• Facilitation of an understanding between tribes and the Federal Government on issues related to

AI/AN health research and tribal sovereignty; 

• Normalization of evidence-based practices for minority communities and cultures in grant 

programs; 

• Equity in receiving funding for tribes and other groups that respond to Funding Opportunity 

Announcements (FOAs); 

• Sufficient time between the release of an FOA and its deadline to allow for tribal resolutions and 

approval to submit the grant; 

• Requirement of tribal resolutions/letters for any application that proposes to work with Native 

communities; 

• Increased numbers of Native individuals on standing committees in place of simply sponsoring 

special reviews; 

• Development of a training module for non-Native review panel participants; and

• Increased numbers of pre-doctoral and post-doctoral AI/AN researchers in the NIH pipeline. 

MEETINGS (TELECONFERENCE AND IN-PERSON) 

February 26, 2013

The HRAC held its first teleconference for Fiscal Year 2013 on February 26, 2013. LCDR Tracy 

Branch welcomed the HRAC to the call. She reported that Dr. J. Nadine Gracia, Director of OMH, had 

shared at the HHS Secretary’s Tribal Advisory Committee January 2013 meeting that the HRAC was 

concerned about states not recognizing TECs’ public health authority status. She informed the STAC 

members that the HRAC was drafting a letter with recommendations on this issue. 

Dr. Alan Trachtenberg, IHS, reported that he had participated in several meetings of the National 

Children’s Study Federal Consortium. He said the HRAC was concerned that the national probability 

sample did not include the Northern Plains or Alaska and therefore was not fully representative of 

AI/ANs. A potential solution from the National Children’s Study is that out of the 100,000 respondents 

the investigators intend to follow, they will select 90,000 from the national probability sample. The 

study will reserve 10,000 for selection with alternate approaches to address other scientific questions 

and ensure adequate representation, and will begin to address the 10,000 participants in the nonprobability subsample in about one year, so the HRAC members have time to consider how to 

encourage adequate representation of AI/ANs from the Northern Plains and Alaska. 

LCDR Branch held conversations with the National Library of Medicine (NLM), in a follow-up to the 

HRAC discussions at the September 2012 meeting, regarding a Native research database or 

clearinghouse. Specific questions from NLM included the types of materials in the database, the 

proprietary nature of those materials, who would create the database, and which individuals would have 

access to it. Dr. Trachtenberg suggested there is no need for a new database because one exists at the 

University of New Mexico (UNM) that IHS previously funded. While UNM continues to manage the 

database, it still needs maintenance. Councilwoman Cowan Watts, who noted there had been previous 

discussions about that database, said she and Dr. Malia Villegas, National At-Large Alternate, will work 

together on this issue. 
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April 30, 2013

The HRAC teleconference call on April 30, 2013, began with Dr. Gracia welcoming new members of 

the HRAC and thanking the HRAC members for their service and input to HHS, acknowledging their

time and dedication. 

Michael Peercy, National At-Large Delegate, reported a draft letter to the HHS Data Council was being 

developed by a work group that included Dr. Jay Butler, Alaska Area Alternate, and Tom Anderson, 

Oklahoma Area Alternate. The letter to the Data Council addressed data ownership, data sharing, and 

data stewardship—including biologic specimens—and noted the importance of respect for Institutional 

Review Boards (IRBs), research review committees, and the National Data Warehouse (NDW). The 

letter also addressed TECs, their data sharing, and data sampling in large data samples. The work group 

members discussed what to ask from the Data Council, with Councilwoman Cowan Watts replying that 

the HRAC needs to first ask for an HHS-wide data policy surrounding Indian Country. Dr. Villegas

asked if this would be a data-sharing policy with guidelines decided by tribal leaders, adding that the 

letter could identify four or five specific areas and provide examples of what is working in the field 

currently. 

Councilwoman Cowan Watts reported that at the HHS National Tribal Budget and Policy Consultation 

Session she attended during March in Washington, DC, the HRAC had a one-on-one session with NIH 

where they discussed NIH’s Guidance on the Implementation of the HHS Tribal Consultation Policy. 

She also testified during the consultation on HRAC issues and submitted written testimony. 

July 29, 2013 

The HRAC held its in-person meeting for Fiscal Year 2013 on July 29, 2013, in Rockville, Maryland. 

Councilwoman Cowan Watts opened the meeting and welcomed new and returning HRAC members 

and representatives of Federal partners. CDR Jacqueline Rodrigue noted that the HRAC serves as a 

forum for collaboration between tribal leaders and HHS. 

Captain Francis Frazier, Deputy Director, Office of Public Health Support (OPHS) at IHS, highlighted 

OPHS activities linked to HRAC priorities, including: 

• Native American Research Centers for Health. IHS collaborates with the National Institute for 

General Medical Sciences (NIGMS) to support the NARCH program. The OPHS Division of 

Epidemiology and Disease Prevention (DEDP) coordinates NARCH activities for IHS. NIGMS 

provides base funding and liaises with other NIH Institutes; the NIH Center for Scientific Review

reviews NARCH applications. The strong relationship between federal research institutions and 

tribal partners makes the NARCH program successful and provides opportunities for Native students 

to move into the field of research. 

NARCH programs support a wide range of community-based projects for tribes and tribal

organizations across Indian Country. There have been minimal reductions in NARCH funding 

despite federal budget constraints. 

OPHS is currently designing the evaluation of the NARCH program, which will include both 

qualitative and quantitative analysis as well as the HRAC general research recommendations, as 

appropriate. 

• Tribal Epidemiology Centers. The passage of the Indian Health Care Improvement Act under the 

Affordable Care Act permanently reauthorized the TECs. The DEDP manages the TEC cooperative 
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agreements and provides oversight for the centers. TEC core functions include data collection, data 

evaluation, health priorities, recommendations for health services, improvements for the health care 

delivery system, and technical assistance on epidemiology for tribal organizations. 

IHS developed a data-sharing template for TEC activities that does not include personally 

identifiable information (PII). The Epidemiology Data Mart furnishes that information on a projectby-project basis, with IHS planning to augment the existing template to address PII. 

• Division of Program Statistics (DPS). The DPS produces statistical information and publications for 

IHS. It works closely with internal partners, such as the National Patient Information Reporting 

System, NDW, and the HHS Office of Information Technology. The DPS also collaborates with 

partners such as the National Center for Health Statistics. 

Councilman Chester Antone, Delegate, Tucson Area, asked how IHS data from the Resource and Patient 

Management System (RPMS) and non-RPMS data are converted for the NDW. He also expressed 

concern about the use of residency data to determine Health Professional Shortage Areas and service 

delivery. The IHS data system does not allow reporting of certain data, and tribal communities have 

some concern about misuse of the RPMS system. Captain Frazier said OPHS would provide a formal 

response after a careful review of the Councilman’s questions. Councilwoman Cowan Watts noted that 

HRAC members continued to have questions regarding data access and asked how IHS was working 

with tribes to develop IRBs. Dr. Trachtenberg stated that the first step is to develop a Tribal Federal

Wide Assurance (FWA) and then to create a Tribal Research Review Committee, which is not a formal 

IRB, but can identify tribal interests in proposed research. IHS IRBs require some form of tribal

approval, whether by a tribal IRB or a tribal Council. Some area office IRBs have been transitioned to 

tribal IRBs or tribal organization IRBs. IHS has free web-based training to help tribes develop a tribal

FWA or tribal IRB. 

Elizabeth Carr, Tribal Affairs Specialist, Office of Intergovernmental and External Affairs, updated the 

HRAC on the Intradepartmental Council on Native American Affairs (ICNAA) and its new data 

priority. ICNAA is undertaking the data initiative (based on testimony the HRAC provided from 2012 

and 2013) in conjunction with the HHS Chief Technological Officer to address data sharing, data 

collection, and data warehousing. ICNAA plans to provide technical assistance to all HHS branches to 

ensure they are aware of tribal differences and cultural issues pertaining to data collection and data 

sharing. 

Dr. Shobha Srinivasan, Health Disparities Research Coordinator from the National Cancer Institute, 

NIH, provided an overview of NIH funding opportunities relevant to Native communities with a focus 

on the “Interventions for Health Promotion and Disease Prevention in Native American Populations” 

grant program. HRAC members provided feedback on the IRB process, the FOA language pertaining to 

tacit approval, decreased funding for research centers at minority-serving institutions, and the ethics 

involved in studying genetic data and biological samples from Native populations. 

Dr. Kishena Wadhwani, Director of the Division of Scientific Review, Office of Extramural Research, 

presented on the AHRQ and Quality Peer Review Grant Process Review. Highlights included his

explanation of the five study sections of the Division of Scientific Review, criteria for reviewer 

selection, and the peer review process. 

The HRAC reviewed each of the HRAC priorities, including State/Tribal Epidemiology Centers’ 

Relationship and Public Health Authority Status, the National Children’s Study, the HHS Data Council, 

scholarship opportunities/data sharing, general research recommendations, and the Native Research 
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Database/Clearinghouse. The HRAC formed work groups to follow up on action items to address these 

priorities. 

HRAC Members at July 2013 Meeting

September 10, 2013 

The HRAC teleconference call on September 10, 2013, began with Councilwoman Cowan Watts asking 

for brief introductions. Dr. J. Nadine Gracia thanked the HRAC members for their service and input to 

HHS, noting that OMH continues to be strategically focused on the Affordable Care Act — particularly

on outreach and education—with the Affordable Care Act a departmental and administration-wide 

priority. OMH is leading the implementation of the HHS Action Plan to Reduce Racial and Ethnic 

Health Disparities, and the Enhanced National Standards for Culturally and Linguistically Appropriate 

Services in Health and Health Care released in April 2013. OMH, through the National Partnership for 

Action to End Health Disparities, continues to support 10 Regional Health Equity Councils across the 

country in their work to combat health disparities, using the social determinants of health approach.

Dr. Trachtenberg reported that the Institute of Medicine will convene a review panel for the proposed 

design of the National Children’s Study. The stratification was formerly geographically based, which 

resulted in the omission of the Northern Plains and Alaska. The study is now creating a new sampling 

framework based on hospital and birthing centers. It was suggested that the HRAC ask that Indian 

hospital births from both tribal and IHS hospitals be included, with oversampling from Indian hospitals. 

Councilwoman Cowan Watts said that this approach will resolve the identification issue for citizenship. 

Dr. Dan Calac, California Area Alternate, referenced Dr. Wadhwani’s presentation during the HRAC 

Annual Meeting on the AHRQ review process and shared his experience as a reviewer. There were 20 

reviewers in his section and all were Native or had worked with Native communities for 10 to 20 years. 

Dr. Calac appreciated how NIH ensured that reviewers had the relevant background experience and said

that reviewers took the review process very seriously. He noted, at times, the proposal information was 
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not presented in a helpful format. He said that if a reviewer was not familiar with the context of the 

study, then he recommended reviewers do some background work (such as how the study was 

developed or where the study’s catchment area was located). Dr. Calac offered to serve as a resource, 

answer questions about the review process, and serve as a reviewer. 

OUTREACH ACTIVITIES

The HRAC conducted outreach throughout the year to share its priorities and recommendations, provide 

updates to tribes on its activities, and gather feedback and input from tribes and tribal communities 

about research issues, concerns, and priorities. The National Indian Health Board Quarterly Meeting on 

March 4, 2013, included an HRAC update. Councilwoman Cowan Watts attended the 15th Annual 

National Tribal Budget Consultation Session on March 7-8, 2013, in Washington, DC, and presented 

testimony on behalf of the HRAC. She and Councilman Chester Antone provided updates on the HRAC 

during the HHS Regional Tribal Consultations in Spring 2013, and Councilwoman Cowan Watts 

presented HRAC information at the 5th Annual Oklahoma City Area Indian Tribal Health Board Public 

Health Conference on April 16, 2013, in Catoosa, Oklahoma. 

Councilwoman Cowan Watts and Cathy Abramson, NIHB Chairperson 

NIHB Quarterly Meeting on March 4, 2013 

ANNUAL HEALTH RESEARCH REPORT

The HRAC produced its Annual Health Research Report, a compilation of findings related to important 

health research topics in AI/AN communities. This report serves as a resource on research findings, 

topics, and available federal programs with tribes. 

RECOMMENDATIONS TO HHS

The HRAC submitted recommendations to HHS by testimony on March 8, 2013, on issues of concern 

from the tribal communities that the HRAC represents. In addition, the HRAC submitted a letter of 

request to the HHS Data Council on July 12, 2013, regarding sharing of tribal health data and a request 

for a tribal consultation. The HRAC distinguished four major recommendations to HHS and provided 

some general research recommendations. The details of the testimony are listed below.
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TRIBAL EPIDEMIOLOGY CENTERS’ PUBLIC HEALTH AUTHORITY STATUS

TECs are having difficulty gaining access to data sets held by state governments even though the 

Affordable Care Act established these TECs as “public health authorities” (as that term is defined in the 

Health Insurance Portability and Accountability Act of 1996). The Affordable Care Act also provided 

new statutory authority for IHS-funded TECs to access “data, data sets, monitoring systems, delivery 

systems and other protected health information in possession of the Secretary.” 

Access to state-maintained data sets is particularly important given the high rates of misidentification of 

AI/ANs in most state data and resulting publications and use of misinformation concerning AI/AN 

health status and access to health services. Access to state data sets, such as vital statistics records and 

the Pregnancy Risk Assessment Monitoring System, is important because access to IHS-provided 

services varies greatly within the IHS delivery system and many service areas do not have access to 

IHS-operated hospitals or IHS specialty providers. This results in IHS data alone being insufficient to 

reflect a more comprehensive picture of AI/AN service utilization and health status in those states.

The HRAC recommends that the Secretary send a letter to the governor of each state and their 

Departments of Health requesting that they facilitate TEC access to state data and data sets for the 

purposes of assessing and reporting the health status of AI/ANs in each state for health program and 

facility planning. Furthermore, when TECs access state data, fees charged should not be higher than 

those paid by other governmental entities. The HRAC urges states to work with the TECs to provide 

comparable data on the health status of the general population for benchmarking and to track progress in 

eliminating health disparities. It also asks that TECs have a place, such as the Office of the Secretary, 

where they can report any further difficulties in accessing the data and that states be aware of this 

reporting mechanism. 

NATIONAL CHILDREN’S STUDY 

While the HRAC fully supports the intent and purpose of the National Children’s Study, the study could 

have more meaningfully included the participation of Tribal Nations and the AI/AN community. Tribal

consultation should have been required before the study was planned and funding committed in a 

manner consistent with longstanding federal policy. Consultation should also be utilized at each new 

stage of the study so that local tribes are consulted during the planning phase. 

The HRAC believes there is still an opportunity at this stage in the National Children’s Study to 

implement the following recommendations:

• Health research participants defined as American Indian or Alaskan Native must present proof of 

enrollment from a federally recognized tribe as provided in the current “Indian 

Entities Recognized and Eligible to Receive Services from the United States Bureau of Indian 

Affairs [BIA]” or meet the BIA definition of American Indian or Alaskan Native as provided by 

a “Certificate of Degree of Indian Blood.” Self-identification is not adequate;

• Oversampling of AI/AN populations should be done. The target number of 2,000 AI/ANs is not 

adequate;

• Funding for additional cohorts in Indian Country to meet oversampling and diverse community 

needs to ensure diversity within Indian Country and to avoid the unacceptable practice of leaving

out entire communities such as Alaska Natives and Plains Indians; 

• Sampling protocols promised, including preservation of DNA and tissue samples, must be 

followed and tribes consulted before, during, and after the study as an on-going partner; 
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• Commitment to tribal sovereignty must be kept; 

• De-identification of data must be reviewed with tribes; 

• A data-sharing agreement with tribes must be established in partnership with the tribe before the 

local study commences; and

• Study centers, yet to be named, should be encouraged to target Indian Country in order to 

demonstrate outreach efforts to Native communities to enroll Native children into the study and 

should consult with local tribes before enrollment begins. 

NATIONAL INSTITUTES OF HEALTH TRIBAL CONSULTATION POLICY

The HRAC is encouraged that the NIH addressed tribal consultation with the NIH Guidance on the 

Implementation of the HHS Tribal Consultation Policy. However, the HRAC is concerned about the 

delays in releasing this guidance to tribes. All tribal leaders should be informed of NIH’s efforts and 

receive a copy of the Guidance for their review as well as any upcoming consultation opportunities. 

In addition, more focus should be placed on putting AI/AN leadership throughout the NIH to provide 

advice on issues of importance to Native communities and to ensure tribes are consulted on priorities, 

research design, and community-based research.

HHS DATA COUNCIL

The lack of sharing AI/AN-focused research and health data with Tribal Nations continues to be an area 

of great concern for tribes and their tribal health programs. Having established codes and protocols of 

research with indigenous peoples reinforces the concept that control of data by individual Tribal Nations 

is to be respected and considered of paramount importance when conducting research in tribal

communities and nations. Moreover, access to data for system assessment and quality improvement is 

critical for successful self-governance to meet public health needs. Often relationships between 

academic institutions or government agencies and tribes are strained due to conflicts concerning access 

to and ownership of tribe-related research data. 

The HRAC is concerned that data-sharing agreements, constructed to avoid and prevent unauthorized 

release of pertinent research information or analysis, as well as tribal mechanisms to protect research 

conclusions, are being disseminated but not consistently honored. Additionally, tribal laws to protect 

data or biological specimens may be ineffective when physical controls for access are solely in the hands 

of a government agency or academic institution. These concerns are amplified when those who control 

access to data and specimens are not aware of or do not respect the sovereignty of Tribal Nations in 

determining the management and use of the sensitive human tissue samples and health data. 

True ownership of intellectual property may be difficult to determine. “Data stewardship” usually falls 

to academic or government partners rather than tribal governments. Thus, tribes must rely on these 

trusted partners to maintain data integrity and security as well as prevent release of information or 

materials without prior tribal approval. Funding agencies and academic institutions must be made aware 

of this stewardship role when working with tribal data or research materials and be cooperative in 

relinquishing data sets back to the tribal partner at the conclusion of the study, data analysis, or at the 

request of the tribal community. 

Researchers approaching tribes with proposals should be accustomed to working within the 

community’s infrastructure when seeking approval of a project. Researchers should know many tribes

now have well-established IRBs with strict policies and procedures for handling the review, approval, or 
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disapproval of research conducted within their tribal boundaries and organizations. Many tribes also 

utilize Research Review Committees or Tribal Councils to review new protocols. In certain cases, the 

regional IHS IRBs may have jurisdiction to review and approve proposed projects. In either scenario, 

the ownership of data should always be delineated and a data-sharing agreement executed, which clearly 

states that data is owned by the tribal government, community, or organization, while the academic or 

government partner acts only as an authorized steward. The tribal IRB (or the IHS IRB) must be 

involved in all discussions involving any sharing of research data, publications, manuscripts, etc. 

IHS maintains the NDW that contains clinical data from tribes across the United States. The data stored 

within this database are important for tribal health planning and program assessment by tribes, so access 

to these data is critical. IHS serves as a custodial guardian of these data sets but should not be 

considered the owner of these data. At present, access to these data sets by the tribes is difficult. 

TECs have taken the lead in requesting access to the NDW, acting on the behalf of tribes and in their 

best interests. The TECs must partner with individual tribes to gain prior approval for the data 

stewardship and analysis. TECs can request data sets at the service unit or area-wide level, with data 

aggregated so as not to individually identify the Tribal Nations. There have been seven data-sharing 

agreements executed between the IHS and the TECs through mid-February, 2013, with little actual 

progress evident in the sharing of tribal data sets with the TECs or individual tribes. The TEC works 

with data for multiple purposes, including tribal health system planning and process improvement. 

To address these concerns, the HRAC requested that HHS convene a tribal consultation with the HHS 

Data Council to develop a department-wide policy on data management in Indian Country. This policy 

should address ownership and dissemination of data collected from tribal communities and provide a 

basis of mutual understanding and expectations between tribal leaders and research partners in both 

academia and the federal health agencies. 

The HRAC encourages HHS to pay particular attention to examples of successful partnerships that have 

affirmed the sovereignty of tribes and tribal health organizations. 

• The Alaska Area Specimen Bank is a repository of biological specimens and clinical data collected 

through health research projects conducted among Alaska Native people. The Alaska Area 

Specimen Bank is owned by the Alaska Native people, administered by the Alaska Tribal Health 

System, and managed under the stewardship of the CDC’s Arctic Investigations Program on the 

Alaska Native Health Campus in Anchorage. 

• The University of Oklahoma and the Chickasaw Nation Department of Health have established a 

data-sharing partnership. A memorandum of understanding and a business associate’s agreement 

were signed to put into action a plan to create a database from de-identified health records for public 

health research, tribal planning, and resource development. The database will be used to study 

population level health issues related to chronic disease, infectious disease, and climate change. The 

negotiated agreement places full ownership of data with the tribal partner and joint oversight of 

individual research projects by the university and tribal IRBs. 

The HRAC believes review of these successful partnerships can form the basis of an effective national 

policy to become the norm throughout Indian Country, rather than the exception. 
Page | 13 

GENERAL RESEARCH RECOMMENDATIONS

The HRAC is aware of the high and disproportionate rates of morbidity and mortality experienced by 

AI/ANs; therefore, many of the recommendations focus on addressing the health disparities that 

continue to plague Indian Country. Additionally, the HRAC would like to recommend that HHS 

increase its activities to address the suicide epidemic in AI/AN communities, including the research of 

the root causes of the epidemic.

In order to address the health concerns identified by the HRAC, research should focus on: data quality 

and accuracy to address under-representation of AI/ANs in population health data; the lack of access to 

health care services for AI/ANs in both rural and urban settings; the lack of incorporating traditional 

health care practices and traditional diets; the efficacy of health promotion/disease prevention activities; 

and the lack of health insurance coverage for AI/ANs. The HRAC has identified and recommends 

several research priorities (the list is not prioritized), including:

• Quantification of chronic disease prevalence (such as cancer, heart disease, and diabetes) and 

associated risk factors (including obesity, diet, and physical activity) through sustained support 

of prospective studies among AI/AN populations; 

• Reduction of chronic disease risk factors reduction; 

• Intentional and unintentional injuries; 

• Evaluate methods to improve awareness and treatment of hypertension; 

• Stroke prevalence/prevention; 

• Methamphetamine prevalence/prevention; 

• Evaluation of the use of emerging technologies (such as telemedicine, electronic health records, 

and health information exchanges) for the provision of care; 

• Health services research (such as utilization of prenatal care, preventable hospitalizations, and 

emergency room utilization, etc.); 

• Autoimmune disorders; 

• Suicide prevention; 

• The readiness of tribal governments for public health accreditation; and

• Health care reform impact and effectiveness. 

In addition, efforts should be made to support research aims that attempt to understand exposure to risk 

and vulnerability to AI/AN health over the lifespan, due to social determinants such as social exclusion, 

marginalization, and inequality. Research should address the complex interactions between health 

determinants and long-term exposure to risk unique to AI/ANs as an indigenous population and resulting 

from misguided federal Indian policy. 

It is important to stress that all research conducted should be evidence based, and to the extent possible, 

utilize community-based participatory methods. Tribal governments are the rightful owners of their 

respective data, and therefore all efforts should be undertaken to ensure tribal governments are consulted 

before such data are shared with any entity. In addition to health concerns and research priorities, many 

barriers exist regarding research activities in Indian Country. These barriers could be addressed by: 

• Increasing cultural sensitivity among researchers; 

• Increasing the number of AI/AN researchers, possibly through additional funding through the 

IHS Health Professions Scholarship Program and Loan Repayment Program (CDC and NIH, 

specifically, for research positions);
Page | 14 

• Improving the accuracy of data related to AI/ANs and the interoperability of data among HHS 

Operating and Staff Divisions; 

• Increasing the amount of available comparative data by making oversampling a priority to 

provide this data for comparison; 

• Improving infrastructure among AI/AN tribal governments to increase tribal capacity to carry out 

research and/or implement recommendations identified through research; 

• Increasing the amount of community-driven research; 

• Providing IHS with a research funding line item to support research by and for AI/ANs; 

• Adopting HHS-wide minimum standards and requirements for a tribal data-sharing agreement in 

which the language states that federally recognized tribes, as sovereign nations, must be 

acknowledged as the exclusive owners of indigenous knowledge, biogenetic resources, and 

owners of intellectual property, and that data collected from tribal citizens within the community 

setting must be returned to the community from which it was obtained (the tribe is the only entity 

that has the authority to decide how the data will be used in the future, and thus must retain 

ownership and control over the data upon the study’s conclusion); and

• The establishment of single data sources where, for example, the federal government maintains 

several AI/AN data sources through IHS, the Bureau of Indian Affairs, the Centers for Medicare 

& Medicaid Services, CDC, NIH, SAMHSA, the U.S. Census Bureau, and several others and a 

single, integrated Internet-accessible website with data available to calculate simple statistics, 

such as incidence and prevalence rates, etc., would assist in identifying areas of focus within 

AI/AN communities. Additionally, the resource could provide access to published data as well. 

While the HRAC would like to see more grants awarded directly to tribal governments, it realizes that 

academic institutions and research organizations are often the most suitable awardees for certain highly 

technical and advanced research grants. Unfortunately, when academic institutions and research 

organizations are awarded grants for research affecting AI/AN communities, no uniformity or 

requirements exist for collaboration and cooperation with tribal governments. The HRAC recommends 

that grant requirements include demonstrated cooperation and collaboration with tribal governments, 

such as with the submission of a tribal resolution. While some grant awardees may consider such a 

requirement burdensome, numerous resources exist to reduce any burdens on grant awardees. 

Resources that are readily available to assist include the HRAC, other AI/AN federal advisory bodies, 

inter-tribal organizations, area Indian health boards, TECs, and numerous others. 

The HRAC also recommends that agencies allow more time between when the FOA is released and the 

application deadline. Tribes and tribal organizations typically have internal requirements, such as Tribal

Council approval through a resolution, to meet before developing and submitting a proposal. These 

meetings may only be held monthly, so a 30-day response period to a funding announcement is not 

enough time. The HRAC also recommends that a “Dear Tribal Leader” letter be sent out as an early 

announcement before a funding announcement is released to allow additional preparation time.

In addition to requiring tribal collaboration and cooperation as part of grant funding requirements, it is 

important to have grant reviewers that have demonstrated experience with tribal governments and who 

are culturally sensitive. Such reviewers can ensure that grant applications adequately include 

collaboration and cooperation components as well as evaluate grant applications from the AI/AN 

community, which may have extensive subject matter experience but fewer academic credentials and 

degrees. The HRAC recommends a training module be developed and shared to assist non-Native 

reviewers.
Page | 15 

 

ATTACHMENT A: 

MEMBER AND PARTNER LIST FOR FY 2013 - 2014 

HRAC CO-CHAIRS

Cara Cowan Watts

Tribal Council Representative, Cherokee Nation 

PO Box 2922 

Claremore, OK 74018 

Phone: (918) 752-4342 

Fax: (918) 341-3753 

Email: cara@caracowan.com

Stephen Kutz

Councilman, Cowlitz Indian Tribe

1055 9th Ave, Ste. A 

Longview, WA 98632 

Phone: (360) 508-6347 

Fax: (360) 575-1948 

Email: skutz.health@cowlitz.org

HRAC Co-Chairs, Cara Cowan Watts and Stephen Kutz
Page | 16 

MEMBERS 

2013 Area Representatives

Great Plains Area

Delegate: Vacant

Alternate: Vacant

Alaska Area

Delegate: Ileen Sylvester

Vice President of Executive & Tribal Services, 

Southcentral Foundation 

Alternate: Jay Clarence Butler

Senior Director, Division of Community Health 

Services, Alaska Native Tribal Health Consortium

Albuquerque Area

Delegate: June Shaw 

Tribal Council Member, Mescalero Apache Tribe

Alternate: Joycelyn Dutchie

Tribal Council Member, Southern Ute Indian Tribe

Bemidji Area

Delegate: Aaron Payment 

Tribal Chairman, Sault Ste. Marie Tribe of 

Chippewa Indians

Alternate: Vacant

Billings Area

Delegate: Patty Quisno

Councilwoman, Fort Belknap Indian Community 

Alternate: Darrin Old Coyote 

Chairman, Crow Nation 

California Area 

Delegate: Daniel Calac

Chief Medical Officer, Indian Health Council

Alternate: James Crouch

Executive Director, California Rural Indian Health 

Board

2014 Area Representatives

Great Plains Area (formally the Aberdeen Area)

Delegate: Patrick Marcellais 

Councilman, Turtle Mountain Band of Chippewa 

Indians 

Alternate: John Black Hawk

Chairman, Winnebago Tribe of Nebraska 

Alaska Area

Delegate: Ileen Sylvester

Vice President of Executive & Tribal Services, 

Southcentral Foundation 

Alternate: Jay Clarence Butler

Senior Director, Division of Community Health 

Services, Alaska Native Tribal Health Consortium

Albuquerque Area

Delegate: Vacant

Alternate: Vacant

Bemidji Area

Delegate: Aaron Payment 

Tribal Chairman, Sault Ste. Marie Tribe of 

Chippewa Indians

Alternate: Vacant

Billings Area 

Delegate: Patty Quisno 

Councilwoman, Fort Belknap Indian Community 

Alternate: Darrin Old Coyote 

Chairman, Crow Nation 

California Area 

Delegate: Daniel Calac 

Chief Medical Officer, Indian Health Council

Alternate: Vacant
Page | 17 

2013 Area Representatives 2014 Area Representatives

Nashville Area 

Delegate: Sandra Yarmal

Health Director, Passamaquoddy Tribe Pleasant 

Point 

Alternate: Tihtiyas (“Dee”) Sabattus

Health Policy Analyst, United South and Eastern 

Tribes, Inc.

Navajo Area 

Delegate: Madan Poudel 

Health Services Administrator, Navajo Nation

Alternate: Roselyn Begay 

Program Evaluation Manager, Navajo Nation 

Oklahoma Area 

Delegate: Cara Cowan Watts

Tribal Council Representative, Cherokee Nation 

Alternate: Tom Anderson 

Tribal EpiCenter Manager, Oklahoma City Area 

Inter-Tribal Health Board

Phoenix Area

Delegate: Diane Enos

President, Salt River Pima-Maricopa Indian 

Community 

Alternate: Violet Mitchell-Enos 

Health and Human Services Director, Salt River 

Pima-Maricopa Indian Community 

Portland Area 

Delegate: Stephen Kutz 

Councilman, Cowlitz Indian Tribe

Alternate: Stella Washines

Council Member, Yakama Nation

Tucson Area

Delegate: Chester Antone

Councilman, Tohono O'odham Nation 

Alternate: Vacant

Nashville Area 

Delegate: Sandra Yarmal 

Health Director, Passamaquoddy Tribe Pleasant 

Point 

Alternate: Tihtiyas (“Dee”) Sabattus

Health Policy Analyst, United South and Eastern 

Tribes, Inc.

Navajo Area 

Delegate: Rex Lee Jim 

Vice President, Navajo Nation

Alternate: Larry Curley

Executive Director, Navajo National Division of 

Health

Oklahoma Area 

Delegate: Cara Cowan Watts 

Tribal Council Representative, Cherokee Nation 

Alternate: Tom Anderson 

Tribal EpiCenter Manager, Oklahoma City Area 

Inter-Tribal Health Board

Phoenix Area

Delegate: Diane Enos 

President, Salt River Pima-Maricopa Indian 

Community 

Alternate: Violet Mitchell-Enos 

Director, Health and Human Services, Salt River 

Pima-Maricopa Indian Community 

Portland Area 

Delegate: Stephen Kutz 

Councilman, Cowlitz Indian Tribe 

Alternate: Vacant

Tucson Area

Delegate: Chester Antone 

Councilman, Tohono O'odham Nation 

Alternate: Vacant
Page | 18 

2013 National At-Large Members

Delegate: Andrew Joseph, Jr. 

Chairman, Human Services Committee, 

Confederated Tribes of the Colville Reservation 

Alternate: Vacant

Delegate: Jefferson Keel

Lt. Governor, Chickasaw Nation 

Alternate: Malia Villegas

Director, Policy Research Center, National 

Congress of American Indians 

Delegate: H. Sally Smith

Chair of the Board of Directors, Bristol Bay Area 

Health Corporation and Alaska Representative of 

National Indian Health Board 

Alternate: Stacy Bohlen 

Executive Director, National Indian Health Board

Delegate: Michael Peercy

Epidemiologist, Choctaw Nation Health Services 

Authority/Chickasaw Nation

Alternate: Mickey Peercy

Executive Director of Health Services, Choctaw 

Nation of Oklahoma 

2014 National At-Large Members

Delegate: Vacant 

Alternate: Vacant

Delegate: Jefferson Keel 

Lt. Governor, Chickasaw Nation

Alternate: Malia Villegas

Director, Policy Research Center, National 

Congress of American Indians 

Delegate: H. Sally Smith 

Chair of the Board of Directors, Bristol Bay Area 

Health Corporation and Alaska Representative of 

National Indian Health Board 

Alternate: Stacy Bohlen 

Executive Director, National Indian Health Board

Delegate: Michael Peercy

Epidemiologist, Choctaw Nation Health Services 

Authority/Chickasaw Nation

Alternate: Mickey Peercy

Executive Director of Health Services, Choctaw 

Nation of Oklahoma 
Page | 19 

FEDERAL PARTNERS

2013 Federal Partners

Administration for Children and Families

Delegate: Anne Bergan

Office of Planning, Research and Evaluation 

Alternate: Hilary Forster

Office of Planning, Research and Evaluation 

Alternate: Molly Irwin

Office of Planning, Research and Evaluation 

Agency for Healthcare Research and Quality 

Delegate: Wendy Perry

Senior Program Analyst 

Assistant Secretary for Planning and Evaluation 

Delegate: Sue Clain

Indian Health Desk Officer

Alternate: Ansalan Stewart

Program Analyst

Centers for Disease Control and Prevention 

Delegate: Delight Satter

Associate Director, Tribal Support 

Alternate: Kimberly Cantrell

Deputy Associate Director, Tribal Support 

Health Resources and Services Administration

Delegate: Michelle Allender-Smith

Director, Office of Health Equity 

Alternate: Chrisp Perry

Public Health Analyst, Office of Health Equity 

Indian Health Service

Delegate: Alan Trachtenberg

Research Director, United States Public Health 

Service

Alternate: Carolyn Aoyama

Senior Consultant, Women’s Health and Advanced 

Practice Nursing

2014 Federal Partners

Administration for Children and Families

Delegate: Anne Bergan

Office of Planning, Research and Evaluation 

Alternate: Hilary Forster

Office of Planning, Research and Evaluation 

Agency for Healthcare Research and Quality 

Delegate: Kishena C. Wadhwani 

Director, Division of Scientific Review

Alternate: Vacant 

Assistant Secretary for Planning and Evaluation 

Delegate: Sue Clain

Indian Health Desk Officer

Alternate: Ansalan Stewart

Program Analyst

Centers for Disease Control and Prevention 

Delegate: Delight Satter

Associate Director, Tribal Support 

Alternate: Kimberly Cantrell

Deputy Associate Director, Tribal Support 

Health Resources and Services Administration

Delegate: Michelle Allender-Smith

Director, Office of Health Equity 

Alternate: Chrisp Perry and LCDR Gwenivere 

Rose 

Public Health Analysts, Office of Health Equity 

Indian Health Service

Delegate: Mose A. Herne

Director, Division of Planning, Evaluation, and 

Research

Alternate: Vacant
Page | 20 

2013 Federal Partners

National Institutes of Health 

Delegate: John Ruffin 

Director, National Institute on Minority Health and 

Health Disparities

Alternate: Joyce A. Hunter

Deputy Director, National Institute on Minority 

Health and Health Disparities

Office of Minority Health* 

Delegate: J. Nadine Gracia

Deputy Assistant Secretary for Minority Health 

and Director

Alternate: CDR Tracy Branch

Public Health Advisor 

Substance Abuse and Mental Health Services 

Administration

Delegate: Sheila Cooper 

Senior Advisor for Tribal Affairs

2014 Federal Partners

National Institutes of Health 

Delegate: Yvonne Maddox 

Acting Director, National Institute on Minority 

Health and Health Disparities

Alternate: Joyce A. Hunter 

Deputy Director, National Institute on Minority 

Health and Health Disparities

Office of Minority Health* 

Delegate: J. Nadine Gracia

Deputy Assistant Secretary for Minority Health 

and Director

Alternate: CDR Tracy Branch and Rick Haverkate 

Public Health Advisors 

Substance Abuse and Mental Health Services 

Administration

Delegate: Sheila Cooper 

Senior Advisor for Tribal Affairs

*HRAC Executive Secretariat
Page | 21 

For Additional Information on the HRAC:

Please Contact:

Rick Haverkate, MPH 

Public Health Advisor

American Indian/Alaska Native Health Policy Lead

Office of Minority Health 

1101 Wootton Parkway, Suite 600

Rockville, MD 20852

Phone: (240) 453-2882 

Email: Richard.Haverkate@hhs.gov