The American Indian and Alaska Native 

Health Research Advisory Council (HRAC) 

Third Annual Report 

Fiscal Year 2011 
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TABLE OF CONTENTS 

INTRODUCTION 1

BACKGROUND 1

Presidential Memorandums and Executive Orders 1

Formation of the HRAC 2

HRAC History 2

FY2011 ACTIVITIES 4

Research Roundtable 4

Meetings (Teleconference and Face-to-Face) 4

Outreach Activities 7

Annual Health Research Report 8

Federal Partner Activities 8

HHS RECOMMENDATIONS TO THE SECRETARY 8

ATTACHMENT A: MEMBER AND PARTNER LIST 12

HRAC CO-CHAIR 12

MEMBERS 12

Area Representatives 12

National At-Large Members 13

Federal Partners 14
1 

INTRODUCTION 

The Third Annual HRAC Report represents a chronological summary of events accomplished by the 

American Indian/Alaska Native (AI/AN) Health Research Advisory Council (HRAC). The report also 

includes recommendations that were submitted to the U.S. Department of Health and Human Services 

(HHS) regarding pertinent AI/AN health and research topics, as well as a list of Council members and 

partners. 

BACKGROUND

The Office of Minority Health (OMH) was established by the HHS in 1986 to advise the Secretary on 

public health programs affecting ethnic and minority populations, including the AI/AN population. The 

OMH assists in the Federal delivery of health services and funding of programs to maintain and improve 

the health of racial and ethnic minorities. This includes ensuring that AI/ANs have access to critical 

health and human services as promised through numerous laws, treaties, and legislative acts dating as far 

back as 1787. The United States Government utilizes the special government-to-government relationship 

with Indian Tribes that recognizes and respects the sovereignty of Tribal Nations. Through numerous 

Presidential Memorandums and Executive Orders, HHS agencies consult with individual Tribal 

Governments via open, continuous, meaningful consultation on issues with significant impact on Tribal 

communities. 

PRESIDENTIAL MEMORANDUMS AND EXECUTIVE ORDERS

On April 29, 1994, President Clinton issued a memorandum, Government-to-Government Relationship 

with Native American Tribal Governments, to executive departments and agencies that reinforced the 

special relationship between Tribal Governments and the Federal Government in regards to Tribal 

consultation and sovereignty. In response to the memorandum, The Domestic Policy Council (DPC) 

Working Group on Indian Affairs requested that each Department develop its own operational definition 

of "consultation" with Indian Tribes. This request, along with other DPC recommendations, ultimately 

led to the creation of HHS’ formal Tribal Consultation Policy (TCP) on August 7, 1997—developed to 

strengthen the government-to-government relationship and ensure that Tribes are consulted on matters 

that affect them. Since the TCP initiative, Tribal consultation has continued and is considered an 

important vehicle to advance the future of AI/ANs. 

On November 6, 2000, President Clinton issued a revised Executive Order (13175) that reinforced his 

Administration’s commitment to Tribal sovereignty and the unique government-to-government 

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. 

Tribal leaders and HHS officials realized that consultation sessions typically focused on immediate 

needs and funding issues and therefore were not ideal forums to discuss health research topics and other 

priorities of AI/ANs. In recognition of this problem, and to allow for a more formal process to discuss 

research topics, the American Indian/Alaska Native Health Research Advisory Council (HRAC) was 

formed. 
2 

FORMATION OF THE HRAC 

In November 2005, HHS solicited nominations from Tribal leaders for HRAC delegates to facilitate the 

Department’s consultations with Tribes concerning collaborative approaches to addressing health 

research priorities and needs in AI/AN communities. 

The HRAC was established to fulfill three primary functions: 

1. Obtaining input from Tribal leaders on health research priorities and needs for their 

communities. 

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

communicate and coordinate AI/AN health research activities. 

3. Providing a conduit for disseminating information to Tribes about research findings from 

studies on the health of AI/AN populations. 

During 2006, the HRAC held its first meeting and elected two Co-Chairs to serve as its leaders and 

facilitators for outreach events and general activities of the Council. The Council held several 

conference calls to plan and organize its activities such as reviewing other HHS advisory models, 

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

During a second meeting that was held in Albuquerque, New Mexico, the HRAC reached a collective 

agreement to focus on three objectives: 

1. Establish the HRAC Council 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 in Indian 

Country). 

3. Set future meeting dates. 

HRAC HISTORY

The HRAC has made great strides in developing the Council and making recommendations regarding 

health research to improve the lives of AI/ANs throughout Indian Country. The HRAC has attended 

numerous meetings and conferences; held bi-annual meetings to discuss the progress of the Council; 

collaborated with the Agency for Healthcare Research and Quality (AHRQ), Assistant Secretary for 

Planning and Evaluation (ASPE), Centers for Disease Control and Prevention (CDC), Indian Health 

Service (IHS), Intergovernmental and External Affairs (IEA), National Institutes of Health (NIH), 

Office of Minority Health, EpiCenter staff, and outside researchers and scientists to further its 

knowledge base regarding health research. The HRAC held quarterly conference calls, attended 

outreach events, and met with top Federal officials to offer recommendations and help them understand 

Native American culture and the problems plaguing Indian Country today. 

The HRAC has attended and presented testimony at the HHS Annual National Tribal Budget and Policy 

Consultation Session. For the past few years, Councilwoman Cara Cowan Watts has presented 

testimony on behalf of the HRAC and the Native communities HRAC represents. During the testimony 

provided by Councilwoman Watts, she discussed the National Children’s Study; and made general 

research recommendations such as quantification of chronic disease prevalence, chronic disease risk 

reduction, and methamphetamine prevalence and prevention. 
3 

The HRAC has participated in outreach events to make Tribes aware of the Council, its work, and how 

Tribes and Tribal communities can provide feedback to HRAC regarding AI/AN health research. The 

HRAC attended events such as the National Indian Health Board Public Health Summit and the Annual 

Consumer Conference, Annual Native Health Research Conference, Third National Leadership Summit 

on Eliminating Racial and Ethnic Disparities in Health, IHS/Health Canada Maternal and Child Health 

Research Meeting, and the AI/AN Health Policy Conference. These conferences provided an 

opportunity to collaborate and share knowledge that is of paramount importance to the advancement of 

health care research in Indian Country. 

The HRAC developed a survey, The Discussion Guide, to ascertain health research priorities in Indian 

Country. The survey questions were constructed to thoroughly examine the current health care delivery 

systems and current research Tribes may be conducting themselves. HRAC members disseminated the 

Discussion Guide to the Tribal leaders in their respective areas. Respondents reported that their top 

health concerns were cancer; diabetes; obesity; cardiovascular disease; and behavioral health issues 

including substance abuse, tobacco use, suicide, and domestic violence. The respondents cited lack of 

funding; recruitment/retention of highly qualified health care professionals/providers; access to care; 

health information technology and systems; and coordination of care as their top five health delivery 

system concerns. Results from the Discussion Guide provided valuable information to the HRAC from 

the Tribes’ perspective regarding health concerns, priorities, and the way in which research should be 

conducted. The HRAC uses the Discussion Guide results to assist in developing key research areas and 

priorities. 

The HRAC website, http://www.minorityhealth.hhs.gov/hrac, was launched in April 2009. The HRAC 

Charter, membership list, meeting agendas and minutes, as well as other documents relevant to the 

HRAC and its activities are posted on the site. The website serves as a central repository of research 

priorities, activities, and resources for the HRAC and members of Native communities. 

On conference calls and during meetings held by the HRAC, The National Children’s Study1

 

 (NCS) was 

a topic of continued interest and concern. The NCS is a study coordinated by a consortium of Federal 

agencies consisting of more than 100,000 children across the United States—tracking them from before 

birth until age 21. It will examine important health issues with the overall goal of improving the health 

and well-being of children for generations to come. When the HRAC learned about this study, many 

questions and concerns surfaced. The HRAC held one quarterly teleconference meeting with Tribal 

members and Federal Partners with discussions centering on the NCS. The HRAC expressed questions 

and concerns regarding the $22 million dollar study, particularly the sampling of only 2000 American 

Indian (AI) children and the State of Alaska not being sampled in the study. While 2000 AI children is a 

reasonable representation of the total sampling frame and the selected counties do offer valuable 

information regarding the AI/AN population, it does not sufficiently depict the true health picture of 

AI/AN communities. The HRAC also identified the need to include Alaska Native communities in the 

study as there are over 250 Tribes residing and the greatest environmental variables exist. The HRAC 

continues to examine this study and the benefits of oversampling for the AI/AN population as well as 

the feasibility of a proposed Great Plains and Alaska Native Children’s Study. 

1 https://nationalchildrensstudy.gov 
4 

FY2011 ACTIVITIES

RESEARCH ROUNDTABLE

The first HRAC Research Roundtable was held October 21, 2010 on the National Institutes of Health 

campus. The purpose of this meeting was to bring together four HRAC members, four Native 

researchers, four EpiCenter representatives, and Federal Partners to discuss health research priorities for 

AI/AN communities. The HRAC presented on what has been identified as priorities from discussion 

guide results, testimony to HHS, and recommendations to HHS and requested feedback from the Native 

researchers and EpiCenter representatives on what specific areas need to be researched within the broad 

categories like cancer, diabetes, etc. The HRAC plans on taking this information back to the full 

Council for consideration and prioritization. 

The meeting started off with an invocation by Steve Kutz. The Co-Chair, Cara Cowan Watts, and OMH 

Special Assistant on Native American Affairs, Wilbur Woodis, began the meeting with opening remarks 

and introductions. The first item on the agenda that was discussed was health disparities not identified 

by HRAC that should be considered and recommended to HHS. 

Below is a list of additional research priorities that were suggested: 

 Pain management for advanced stage cancer patients 

 Breast cancer 

 Chronic health issues 

 Traditional pain management methods 

 Depression (including post-partum depression and anger/rage accompanying depression in 

women) 

 Psychiatric manifestations of historical trauma syndrome 

 Nutrition and traditional foods 

 Environmental impacts (i.e. how does a person’s environment affect drug and alcohol abuse)

 Preventative care (what is effective) 

 Spirituality as it relates to health and well-being 

 Disabilities 

 Suicide and substance abuse prevention (understand underlying causes; look at parenting 

patterns and skills, culture as a protective factor) 

 Human trafficking 

In addition, there was much discussion around the accuracy of research data and finding a good 

mechanism to collect data. Another area of discussion was on Clinical and Translational Science 

Awards (CTSAs) and the need for quality and accurate data. 

MEETINGS (TELECONFERENCE AND FACE-TO-FACE) 

October 7, 2010 

The HRAC held its first face-to-face meeting for fiscal year 2011 on October 7, 2010, in Albuquerque, 

New Mexico. The HRAC covered topics such as the Native Health History Database (NHHD), the 

Government Performance and Results Act, EpiCenters, National Plan for Action and the HHS AI/AN 
5 

Blueprint for Tribal Consultation, HHS Tribal Federal Work Group, and the HRAC Charter. In 

addition, there were updates from the National Institutes of Health, Centers for Disease Control and 

Prevention, Intergovernmental Affairs Office, Indian Health Service, and the Office of Minority Health. 

The HRAC discussed the University of New Mexico’s two Native Health Databases. There is the 

Native Health History Database consisting of approximately 3300 records and the Native Health 

Research Database (NHRD) consisting of approximately 5700 records. The purpose of the databases is 

to create a high quality, single source of information regarding services and resources focused on 

historical American Indian and Alaska Native health/medical issues. The databases are a ―one stop shop 

for Native American health information.‖ Federal agencies, EpiCenters, States and other associations 

are encouraged to add their research to the database. The Native Health Database can be found at 

https://hscssl.unm.edu/nhd. 

Francis Frazier and Diane Louis Leach, with the Indian Health Service, provided a presentation on the 

Government Performance and Results Act (GPRA) of 1993 and provided an overview of how IHS 

approaches GPRA. They also provided information on the Program Assessment Rating Tool (PART) 

which is another measurement tool. The Tribal PART reports on a specific set of clinical measures and 

these measures are included in the IHS budget submission. Mr. Frazier concluded that it is a group 

effort to really improve performance not just for GPRA measures but for performance in general. This 

would also include providers, administrative staff, data entry, and Information Technology staff as well. 

HRAC members had questions and were concerned about the number of visits required before evaluated 

as well as how performance was tied to the IHS budget. There was also discussion as to how GPRA 

targets are set, including Tribal input, and how else GPRA data is used in terms of health data for Indian 

Country. 

Ileana Herrell, with the National Institutes of Health, reported that The National Center on Minority 

Health and Health Disparities has been elevated to a full fledged Institute. The NIH Director, Dr. Francis 

Collins, has designated Dr. John Ruffin as the NIH Representative to the Intradepartmental Council on 

Native American Affairs (ICNAA). Dr. Herrell advised the HRAC to view HRAC’s Second Annual 

Health Research Report for additional activities and programs of the NIH. 

Stacey Ecoffey, with the Intergovernmental Affairs (IGA) Office, provided updates from IGA 

Headquarters. IGA was in the process of sending out a notification to Tribal leaders announcing the 

Secretary’s Tribal Advisory Committee. In addition, they were seeking nominations for 17 

representatives, one from each area of IHS and five at-large members. They also have been in the 

process of revising the Tribal Consultation Policy. The Tribal Federal Work Group met several times 

over the summer and provided recommendations to the Secretary. 

Leo Nolan, with Indian Health Service, noted that the Indian Health Service does not have a research 

line item. Mr. Nolan also commented on the number of HHS advisory committees that are in existence 

that do not have Tribal representation on the committees. Mr. Nolan said IHS sends out ―requests to 

serve‖ but does not get a lot of responses back from Tribal leaders. He encouraged the HRAC to 

disseminate to Tribes these opportunities to serve on the committees. He also asked that the HRAC 

encourage AI/ANs to apply for positions within HHS. Mr. Nolan also briefly discussed the Friends of 

Indian Health program that advocates for IHS Tribal and Urban Health Programs. 

Patricia Parker reported that an initiative coming out of OMH is the National Plan for Action (NPA). 

The NPA is one of three components to end health disparities. The two other components include: (1) 
6 

ten Regional Blueprints for Action which are aligned with the NPA and include strategies and actions 

most pertinent to communities in each region; and (2) targeted initiatives that will be undertaken by 

partners across the public and private sectors in support of the NPA. 

January 18, 2011 

On January 18, 2011, the HRAC held its quarterly teleconference call with Tribal delegates, alternates 

and Federal Partners. The HRAC discussed the HRAC Research Roundtable held in October of 2010; 

the meeting held with the NIH Director on November 8, 2010 concerning the National Children’s Study, 

Tribal Consultation and the University of New Mexico’s Native Health Database need for funding; the 

2011 HRAC budget; the HRAC invitations to the Health Resources and Services Administration 

(HRSA) and the Substance Abuse and Mental Health Services Administration (SAMHSA); coordination 

for HRAC’s next face-to-face meeting; the Secretary’s Tribal Advisory Committee; the HHS Tribal 

Consultation Policy; and the National Plan for Action to End Health Disparities. 

Wilbur Woodis discussed the status of the HRAC Charter. The charter was revised in December and 

sent back to the Office of General Counsel (OGC) for review. Some of the language from the 

Secretary’s Tribal Advisory Committee (STAC) was used for the national organizations as OGC 

suggested. The national organizations are now referred to as National At-Large Members (NALMs). 

Bud Nicola reported that the CDC now has a Tribal website, under the Office of State, Tribal, Local and 

Territorial Support (OSTLTS) section of the website with CDC’s consultation policy, biannual session 

information, new cooperative agreements, funding for grantees, etc. 

Dr. Steven Hirschfield, from NICHD, reported on the current approach to the National Children’s Study. 

The study, which follows a model that is data-driven, evidence-based, and community and participant 

informed, started off with seven locations that were selected based on infrastructure. The study started 

moving into 30 new areas in November 2010 and by the end of 2011, the NCS will have data to help 

inform NIH. Steve Kutz was concerned about the Tribes not being notified in the planning phases of the 

NCS and suggested that NCS reach out to Native populations. Dr. Hirschfield reported that there are 

Community Advisory Boards located in the targeted areas and information can be found on the NCS 

website, along with the Outreach Coordinator who can provide information. 

May 12, 2011 

On May 12, 2011, the HRAC held its quarterly teleconference call. Updates were provided on HRAC’s 

testimony at the HHS Tribal Budget and Policy Consultation in March, 2011 as well as HRAC’s 

presentation to the Secretary’s Tribal Advisory Committee Meeting in March, 2011. HRAC discussed 

charter revisions to be made in line with suggestions from the HHS Office of General Counsel to be 

Federal Advisory Committee Act (FACA) exempt. Also, discussed was the University of New Mexico 

Health Database which HRAC has been advocating for funding from NIH to support this effort. The 

purpose of this database is to create a high quality, single source of information regarding services and 

resources focused on historical AI/AN health/medical issues. 

HRAC discussed its next meeting and agreed to hold in June in conjunction with the Annual Native 

Health Research Conference. The Indian Health Service also reported during that week it would be 

holding a roundtable discussion with the IHS Director, Dr. Yvette Roubideaux, to hear Tribal priorities. 
7 

Other updates were provided by the Centers for Disease Control and Prevention and Office of Minority 

Health. 

June 27, 2011 

The second HRAC face-to-face meeting was held on June 27, 2011 in Niagara Falls, New York in 

conjunction with the Annual Native Health Research Conference. Mr. Dean Seneca, Centers for 

Disease Control and Prevention and Native Research Network Member, provided the opening blessing. 

Kathy Hughes, HRAC Co-Chair, called the meeting to order. Ms. Hughes provided an update on the 

May meeting of the Secretary’s Tribal Advisory Committee and reported that the STAC would be 

asking all Tribal Advisory Committees, including HRAC, for regular reports to determine key issues 

that should be elevated to the STAC. 

Christina Daulton, HRAC National At-Large Member Alternate and National Congress of American 

Indians Policy Research Center Program Manager, updated the HRAC on its activities at the recent 

NCAI MidYear Session held in Milwaukee, Wisconsin. She also shared that NCAI is developing a 

web-based guide for the National Human Genome Research Institute which will provide tools and 

resources to Tribes to make informed decisions on genetics research. She also mentioned that NCAI 

and NIHB sent a letter to Dr. Collins at NIH in April informing him that Tribal leaders were not given 

an opportunity to discuss NIH’s Tribal Consultation Policy, but they have not received a response yet. 

Annie Huntington-Kriska and Ric Bothwell provided an update on the National Partnership for Action 

and AI/AN Health Disparities Report. HRAC is very interested in reviewing and utilizing to help in 

their work. Other Federal agency updates were provided by OMH, AHRQ, CDC, and IHS. 

Ms. Hughes designated Kristin Hill to speak on her behalf regarding the Data Sharing Agreement: 

Standards and Practices and Data Use Agreement from the Great Lakes Inter-Tribal Epidemiology 

Center. She knew HRAC was very interested in addressing these and she was trying to update for the 

Great Lakes EpiCenter and wanted to get feedback from HRAC. She admitted that they were not 

perfect, but it's a start at getting something in place to be more standardized. 

Other HRAC business included approval of the revised charter, discussion on 2011 Recommendations to 

HHS, and thoughts on potential priorities to submit to the STAC once requested. The group also 

discussed that HRAC should take two to four of the big topics like diabetes, mental health, substance 

abuse and heart disease to identify specific research in those areas. Wendy Perry suggested that 

evidence reports (what has already been done) be developed, which will identify what is still not known. 

It was further suggested that the HRAC recommend starting with one topic like diabetes and ask that 

funds be put towards identifying gaps.

OUTREACH ACTIVITIES

Co-Chair Cara Cowan Watts attended the 13th Annual National Tribal Budget Consultation Session on 

March 2-4, 2011 in Washington, DC and presented testimony on behalf of the HRAC. 

Steve Kutz and Jay Butler represented the HRAC and provided brief reports to attendees of the Region 

10 Tribal Consultations. 

Jay Butler, Alaska Area Alternate, served on a panel as the HRAC representative at the National Indian 

Health Board's (NIHB) Annual Consumer Conference on September 26-29, 2011 in Anchorage, Alaska. 
8 

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 is utilized as a resource to share research 

findings, topics and available federal programs with Tribes. 

FEDERAL PARTNER ACTIVITIES

The Office of Minority Health and HRAC extended invitations, which were accepted, to new Federal 

Partners including the Administration for Children and Families, Health Resources and Services 

Administration, and the Substance Abuse and Mental Health Services Administration. 

The HRAC Federal Partners held meetings on July 14, August 11, and September 22, 2011. The 

meetings were chaired by Wilbur Woodis and each meeting began with a short introduction on the 

HRAC background and functions. 

Other topics of discussion were: 

 An overview of the Indian Health Service Research Roundtable that occurred at the Annual 

Native Health Research Conference (Niagara Falls, NY – June 27, 2011). 

 Evidence based reports. 

 The role of the new STAC and its relationship with current HHS Tribal Advisory Councils. 

 Plans for a second HRAC Research Roundtable to be held on the NIH campus in the fall of 

2011. 

 The possibility of scheduling a meeting with the HHS Data Council and HRAC. 

HHS RECOMMENDATIONS TO THE SECRETARY

HRAC sent recommendations to HHS Secretary Kathleen Sebelius in November 2010 to offer 

recommendations on issues of concern on behalf of the Tribal communities that HRAC represents. The 

recommendations that were submitted are provided below: 

National Institutes of Health 

HRAC recommends that the National Institutes of Health develop a single Tribal consultation policy for 

all 27 Institutes and Centers within the NIH in compliance with: U.S. Health and Human Services 

(HHS) Tribal Consultation Policy; Executive Order 13175, ―Consultation and Coordination with Indian 

Tribal Governments;‖ and the November 5, 2009 Presidential Memo ―Tribal Consultation For The 

Heads Of Executive Departments And Agencies.‖ Tribal consultation policies have been effectively 

used by other HHS Operating and Staff Divisions to increase communication between Tribal Nations 

and the Federal government and a policy within the National Institutes of Health could have a profound 

positive impact on the development of research policy to address serious medical and behavioral health 

issues plaguing Indian Country. The HRAC urges NIH to move forward in this effort. 

In addition, more focus should be placed on putting American Indian and Alaska Native leadership 

throughout the National Institutes of Health to provide advice on issues of importance to Native 

communities and to ensure Tribes are consulted on priorities, research design and community-based 

research. 
9 

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. However, 

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' 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 is not 

adequate. 

 The study lacks diversity within Indian Country. It is unacceptable to leave out entire 

communities such as Alaska Natives and Plains Indians. Funding for additional cohorts in 

Indian Country is required to meet oversampling and diverse community needs. 

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

followed and Tribes consulted before, during and after as an on-going partner. 

 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. 

 Study centers yet to be named should be encouraged to target Indian Country.

 The centers in charge of the studies be instructed in a stronger way to reach out to the Native 

Communities to enroll Native children into the study. 

HHS Data Council 

The HRAC asks that the HHS Data Council adopt an HHS wide Research Policy for Indian Country. 

Recommendations include: 

 HHS wide minimum standards and requirements for a Tribal data sharing agreement. 

 Recognition of diverse Tribal research/data approval and on-going oversight mechanisms such 

as an IRB, Tribal Council, etc. 

 When possible, solicitations for research funding in Indian Country or targeting Indian Country 

should give preference to proposals from Federally-recognized Tribes and Tribal Organizations 

or proposals which include Federally-recognized Tribal Nations and entities serving those 

communities partnerships. 

 Anyone claiming Tribal identity for the purpose of conducting research or pursuing State or 

Federal grants 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' or meet the BIA definition of American Indian or Alaskan 

Native as provided by a 'Certificate of Degree of Indian Blood.' 

 Over-sampling of American Indian and Alaskan Native populations should always be 

considered in planning health research projects. 

 Health research in Indian Country requires the explicit approval of the Tribal Nation(s) 

involved and requires on-going oversight by the Tribal Nation(s). 

 Tribal consultation should occur before the study begins including planning of the study. 
10

 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' or meet the BIA definition of American Indian or Alaskan Native as provided by a 

'Certificate of Degree of Indian Blood.' 

Data Sharing and Collaboration 

HRAC recommends that HHS adopt HHS wide minimum standards and requirement for a Tribal data 

sharing agreement. Federally-recognized Tribes, as sovereign nations, must be recognized as the 

exclusive owner of indigenous knowledge, biogenetic resources, and owners of intellectual property. 

Data collected from Tribal members 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. Without complete access to the data collected, Tribes will not have the information needed 

to improve health outcomes for their people. 

Indian Health Service Scholarships 

The HRAC recommends that IHS Scholarships be limited to American Indians and Alaskan Natives 

with 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' 

or meet the BIA definition of American Indian or Alaskan Native as provided by a 'Certificate of Degree 

of Indian Blood.' In addition, IHS Scholarship recipients should be held accountable for their payback 

period to either IHS or a Tribal 638 qualified Health Department. 

General Research Recommendations 

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

experienced by American Indians/Alaska Natives. In order to address the health concerns identified by 

the HRAC, research should focus on: data quality and accuracy to address under-representation of 

American Indians and Alaska Natives in population health data, the lack of access to health care services 

for AI/ANs in both rural and urban settings, lack of incorporation of 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 

(list is not prioritized), including: 

 Quantification of Chronic Disease prevalence (e.g., cancer, heart disease, diabetes) and 

associated risk factors (e.g., obesity, diet, physical activity) through sustained support of 

prospective studies among AI/AN populations 

 Chronic disease risk factor reduction 

 Intentional and unintentional injuries 

 Hypertension – evaluating methods to improve awareness and treatment of hypertension 

 Stroke Prevalence/Prevention 

 Methamphetamine and Other Drugs Prevalence/Prevention 

 Evaluation of the use of emerging technology (such as telemedicine, electronic health records, 

health information exchange, etc.) for the provision of care 

 Health Services Research (such as utilization of prenatal care; preventable hospitalizations, 

emergency room utilization, etc.) 

 Auto Immune Disorders 

 Mental Health and Suicide Prevention 
11

 Access to high quality healthcare 

HHS American Indian and Alaska Native Health Research Advisory Council 

HHS should continue to fund and support the American Indian and Alaska Native Health Research 

Advisory Council (HRAC) with additional funding for two physical meetings per fiscal year. HRAC 

meetings provide the opportunity for face-to-face interaction between Tribal leaders, Federal Partners, 

researchers and other stakeholders with the goal of healthy Native communities through health research. 
12

ATTACHMENT A: MEMBER AND PARTNER LIST

HRAC CO-CHAIR 

Cara Cowan Watts 

Deputy Speaker and Tribal Council Representative, Cherokee Nation 

PO Box 2922 

Claremore, OK 74018 

Phone: (918) 752-4342 

Fax: (918) 341-3753 

Email: cara@caracowan.com

MEMBERS 

AREA REPRESENTATIVES

Aberdeen Area

Delegate: Adrian Pushetonequa 

Chairman, Sac and Fox Tribe of the Mississippi in Iowa, Meskwaki Nation 

Alternate: Donald Warne 

Senior Policy Advisor for Great Plains Tribal Chairmen’s Health Board

Alaska Area

Delegate: Emily Hughes 

Chairperson, Norton Sound Health Corporation 

Alternate: Jay Clarence Butler 

Senior Director, Division of Community Health Services, Alaska Native Tribal Health Consortium 

Albuquerque Area

Delegate: Vacant 

Alternate: Francine Gachupin 

EpiCenter Director, Albuquerque Area Indian Health Board 

Bemidji Area

Delegate: Vacant 

Alternate: Phyllis Davis 

Tribal Council Member, Gun Lake Tribe of Michigan 

Billings Area

Delegate: Vacant 

Alternate: Vacant 
13

California Area 

Delegate: Michelle Howard 

Tribal Secretary, Redding Rancheria 

Alternate: James Crouch 

Executive Director, California Rural Indian Health Board 

Nashville Area 

Delegate: Elizabeth Neptune 

Tribal Council Member, Passamaquoddy Indian Township 

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: Michelle Ortega 

Councilwoman, Tohono O'odham Nation 

NATIONAL AT-LARGE MEMBERS

Delegate: Andy Joseph, Jr. 

Chairman, Human Services Committee, Confederated Tribes of the Colville Reservation 

Alternate: Vacant 
14

Delegate: Jefferson Keel 

Lt. Governor of Chickasaw Nation and President of National Congress of American Indians 

Alternate: Christina Daulton 

National Congress of American Indians Policy Research Center 

Delegate: H. Sally Smith 

Chair of the Board of Directors, Bristol Bay Area Health Corporation and Alaska Representative of 

National Indian Health Board 

Alternate: Stacey Bohlen 

Executive Director, National Indian Health Board

Delegate: Michael Peercy 

Epidemiologist, Choctaw Nation Health Services Authority 

Alternate: Mickey Peercy 

Executive Director of Health Services, Choctaw Nation of Oklahoma 

FEDERAL PARTNERS

Administration for Children and Families 

Delegate: Molly Irwin 

Office of Planning, Research and Evaluation 

Alternate: Hilary Forster 

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: Melanie Duckworth 

Senior Tribal Liaison for Science and Public Health 

Alternate: Bud Nicola 

CDC Field Assignee 

Health Resources and Services Administration 

Delegate: Michelle Allender-Smith 

Director, Office of Health Equity 

Alternate: Elijah Martin 

Special Assistant, Office of Health Equity 

Alternate: Darci Eswein 

Special Assistant to the Office of the Administrator, Office of Health Equity 
15

Indian Health Service 

Delegate: Vacant 

Alternate: Alan Trachtenberg 

Research Director 

Intergovernmental and External Affairs 

Delegate: Stacey Ecoffey 

Principal Advisor for Tribal Affairs 

Alternate: Elizabeth Carr 

Tribal Affairs Specialist 

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: Nadine Gracia 

Acting Director 

Alternate: Wilbur Woodis 

Special Assistant on Native American Affairs 

Substance Abuse and Mental Health Services Administration 

Delegate: Sheila Cooper 

Senior Advisor for Tribal Affairs 
16

For Additional Information on the HRAC: 

Please Contact: 

Wilbur Woodis 

Special Assistant on Native American Affairs Office 

Office of Minority Health 

Tower Building 

1101 Wootton Parkway, Suite 600 

Rockville, MD 20852 

Phone: (240) 453-6152 

Email: Wilbur.Woodis@hhs.gov