American Indian/Alaska Native 

Health Research Advisory Council 

(HRAC) 

Annual Report 

Fiscal Year 2009 

 
TABLE OF CONTENTS

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

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

Activity Timeline ...................................................................................................................... 2 

2005 Activities.......................................................................................................................... 2 

HRAC Formation.................................................................................................................... 2 

2006 Activities.......................................................................................................................... 2 

May 2006 HRAC Meeting ...................................................................................................... 2 

November 2006 HRAC Meeting............................................................................................. 2 

2007 Activities.......................................................................................................................... 3 

September 2007 Federal Partners Meeting ........................................................................... 3 

December 2007 HRAC Meeting............................................................................................. 3 

2008 Activities.......................................................................................................................... 3 

February 2008 Co-Chair Vote ................................................................................................ 3 

HRAC Charter Ratification (June 2008) ................................................................................. 3 

2008 HHS National Tribal Budget and Policy Consultation Session ...................................... 3 

2008 Annual Meeting ............................................................................................................. 4 

2008 Outreach Activities ........................................................................................................ 4 

August 2008 Town Hall Meeting......................................................................................... 4 

September 2008 Town Hall Meeting .................................................................................. 5 

2009 Activities.......................................................................................................................... 5 

Teleconference on the National Children’s Study (January 2009) ......................................... 5 

Discussion Guide ................................................................................................................... 6 

2009 Meetings ....................................................................................................................... 6 

2009 HHS National Tribal Budget and Policy Consultation Session ...................................... 8 

2009 Outreach Activities ........................................................................................................ 9 

2009 Outreach Meetings .................................................................................................... 9 

HRAC Website ................................................................................................................... 9 

Recommendations .................................................................................................................. 9 

 Comparative Effectiveness Research Recommendations..................................................... 9

 Joint Commission Recommendations.................................................................................. 10

 HHS Recommendations to the Secretary............................................................................ 11

Attachment A: Member and Partner List ............................................................................. 14 

 HRAC Co-Chairs ................................................................................................................. 14

 Members.............................................................................................................................. 14

 Tribal Officials...................................................................................................................... 14

 Tribal Organizations............................................................................................................. 17 

 Federal Partners.................................................................................................................. 16

 
Introduction 

The First Annual HRAC Report represents a concise summary of activities accomplished by 

the American Indian/Alaska Native Health Research Advisory Council. The report comprises a 

chronological account of events that led to the Council’s creation and continues through Fiscal 

Year 2009 activities. The report also includes recommendations the Council has made 

regarding relevant American Indian and Alaska Native health and research topics, as well as a 

list of Council members and partners. 

Background 

The U.S. Department of Health and Human Services (HHS) established the Office of Minority 

Health (OMH) in 1986 to advise the Secretary and the Office of Public Health and Science 

(OPHS) on public health program activities affecting minority populations, including American 

Indians and Alaska Natives (AI/ANs). The OMH aims to eliminate health disparities through 

the development of health policies and programs to improve and protect the health of racial 

and ethnic minorities. This provision includes ensuring that AI/ANs have access to critical 

health and human services. To this end, the Federal Government utilizes the special 

government-to-government relationship with Indian Tribes (where the United States recognizes 

the sovereignty of Tribal Nations) that was established in 1787, based on Article I, Section 8 of 

the Constitution, and subsequently reinforced by numerous laws, treaties, and legislative acts. 

Namely, HHS agencies consult with individual Tribal Governments via open, continuous, 

meaningful consultation on issues with significant impact on Tribes. 

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. However, 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. 

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Figure 1: The Health Research Advisory Council 

 

Activity Timeline 

2005 Activities 

HRAC Formation

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 

charged with the following 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 focusing on the health of AI/AN populations. 

2006 Activities 

May 2006 HRAC Meeting

The first HRAC meeting was held May 16-18, 2006. The HRAC elected Cara Cowan Watts 

(Oklahoma Area) and Cecelia Fire Thunder (Aberdeen Area) as Co-Chairs of the Council. 

During the fall of 2006, the HRAC held several conference calls to plan and organize its 

activities. Agenda topics included reviewing other HHS advisory models, discussing 

solicitation of research priorities, and planning future meetings. 

November 2006 HRAC Meeting

The second HRAC meeting was held November 28-30, 2006, in Albuquerque, New Mexico. 

Tribal representatives attended from the following areas and organizations: Alaska, 

Albuquerque, Bemidji, Nashville, Navajo, Oklahoma, Portland, National Congress of American 

Indians (NCAI), and the National Indian Health Board (NIHB). They were accompanied by 

Federal partners representing the following agencies: Agency for Healthcare Research and 

Quality (AHRQ), Assistant Secretary for Planning and Evaluation (ASPE), Centers for Disease

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Control and Prevention (CDC), Indian Health Service (IHS), National Institutes of Health (NIH), 

Office of Intergovernmental Affairs (IGA), and the Office of Minority Health (OMH). 

At the New Mexico meeting, 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. 

2007 Activities 

September 2007 Federal Partners Meeting

In September 2007, the Federal partners met and discussed the HRAC Charter, Council 

membership, compliance with the Federal Advisory Committee Act (FACA), and the Annual 

HRAC Meeting. 

December 2007 HRAC Meeting

The Annual HRAC Meeting was held December 3, 2007, in Washington D.C. A quorum was 

not met but the following areas and organizations were represented: Albuquerque, Bemidji, 

Nashville, Oklahoma, Phoenix, Tucson, NIHB, and Tribal Self-Governance Advisory 

Committee. The following Federal agencies were also represented: AHRQ, ASPE, CDC, IGA, 

IHS, NIH, and OMH. Meeting participants discussed the HRAC Charter and the Discussion 

Guide at length. Following the meeting, the revised Charter, Discussion Guide and updated 

membership list were disseminated to the HRAC and Federal partners. 

2008 Activities 

February 2008 Co-Chair Vote

In February 2008, via an email vote, Cara Cowan Watts (Oklahoma Area) retained her seat as 

an HRAC Co-Chair. H. Sally Smith (NIHB) was newly elected to serve with Ms. Cowan Watts. 

HRAC Charter Ratification (June 2008)

The HRAC ratified its Charter in June 2008. The Charter outlines the infrastructure and 

purpose of the Council, noting that the HRAC is comprised of elected Tribal officials; one 

delegate and one alternate from each of the 12 IHS areas; and four Washington-based Tribal 

organization participants: Direct Service Tribes Advisory Committee, NCAI, NIHB, and Tribal 

Self-Governance Advisory Committee. Federal partners are also involved in Council activities 

and provide input, support, and linkages with HHS’ Operating and Staff Divisions. The Federal 

partners included: AHRQ, ASPE, CDC, IGA, IHS, NIH, and OMH. 

2008 HHS National Tribal Budget and Policy Consultation Session

The HRAC developed testimony and Co-Chair Cara Cowan Watts presented at the 2008 HHS 

National Tribal Budget and Policy Consultation Session in March 2008. Ms. Cowan Watts 

cited various health concerns identified by the HRAC, including diabetes, cancer, obesity, 

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heart disease and behavioral health. As part of its testimony, the HRAC also recommended 

research activities to address the lack of access to care for AI/ANs; the lack of incorporation of 

traditional care and traditional diets; and the effectiveness of health promotion/disease 

prevention activities. 

The HRAC stressed that all research activities should be evidence-based and, to the extent 

possible, community-based (participatory). Additionally, the Council felt that Tribal 

Governments were the rightful owners of their respective data and therefore should be 

consulted with prior to the data being shared with any entity. 

The following recommendations were offered by the HRAC to assist in closing the gap in 

health research across Indian Country: 

• HHS should become a leader on advancing the research agenda of AI/AN health and 

support innovative research that will serve to improve the health of AI/AN people in the 

United States. 

• In collaboration with AI/AN Tribes, HHS should foster integration and leadership for 

health research; develop partnerships; create knowledge through scientifically sound 

and community/tribally supported health research; and exchange and transfer 

knowledge to those best positioned to apply the results of research. 

• HHS should increase its knowledge and understanding of AI/AN health research issues 

including strengths, gaps, and opportunities so that more effective health services and 

products and a more strengthened AI/AN health care system can be realized. 

• HHS should develop a specific line item for AI/AN health promotion/disease prevention 

programming and evaluation at the CDC. 

2008 Annual Meeting

The 2008 Annual HRAC Meeting was held August 25, 2008 in Portland, Oregon in conjunction 

with the National Native Health Research Conference. The areas and organizations that 

participated were: Alaska, Albuquerque, Bemidji, California, Oklahoma, Phoenix, Portland, 

Tucson, Direct Services Tribes Advisory Committee, NCAI, and NIHB. The Federal partners in 

attendance included: CDC, NIH and OMH. Other attendees included the Alaska Native Health 

Consortium, Inter Tribal Council of Arizona, National Cancer Institute, and the Northwest 

Portland Area Indian Health Board. 

Among the agenda topics included discussions on data sharing agreements; transition plans; 

resolutions with the NCAI and NIHB in support of the HRAC; and the Discussion Guide. There 

was agreement that the Discussion Guide needed format and content revisions. Additionally, 

an OMB-compliant dissemination strategy for the Guide was also discussed. A list of action 

items was developed as a post-meeting deliverable to ensure that the HRAC followed-up on its 

intended activities. 

2008 Outreach Activities

August 2008 Town Hall Meeting 

The HRAC held a Town Hall meeting on August 26, 2008, as part of the National Native Health 

Research Conference in Portland, Oregon. The Town Hall afforded conference participants an 

opportunity to learn about the HRAC, present questions and/or concerns, and to provide and 

receive feedback on issues associated with health disparities impacting Indian Country. 

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Participants at the Town Hall expressed an overwhelming concern about various issues 

related to Federal research grants. Specifically, they indicated a need for more planning 

grants; a lack of Native grant reviewers (and the repeated use of reviewers with no experience 

with/understanding of Native communities); a need for a longer response time to apply for 

funds (to receive community input and to consult with Tribal elders); and the need for 

coordinated efforts to fund overall health issues and a broader range of research grants. 

Feedback from participants prompted several Federal representatives to collect business 

cards from individuals that could potentially serve as grant reviewers. Participants also 

suggested that diversity training was needed among agencies, academic institutions, and 

researchers. 

September 2008 Town Hall Meeting 

The HRAC held a second Town Hall meeting at the National Indian Health Board Consumer 

Conference on September 23, 2008. This Town Hall provided another opportunity for the 

HRAC to share information about its purpose, goals, and activities. The Discussion Guide was 

a main tenet of dialogue and provoked considerable interest among the conference 

participants. HRAC representatives used the Town Hall forum to inform attendees about the 

purpose and importance of the Discussion Guide in hopes of soliciting their participation once 

the Guide was distributed. The Town Hall attendees presented realistic challenges to health 

research, including the coordination, collection and dissemination of data; lack of trust; and 

data ownership. In order to build trust and credibility, they suggested that more AI/AN 

researchers were needed to address the fears Native communities feel from previous research 

experiences. They also recommended that research guidelines and processes be established 

to protect the intellectual property rights and indigenous knowledge of AI/AN communities. 

Other topics broached during the Town Hall included mental health; hepatitis C; vocational 

rehabilitation; elder care (Alzheimer’s, dementia, depression, abuse and neglect); health care 

in remote villages; breast cancer and mammography; healthy foods; injuries; emergency 

transportation; and health issues related to youth including obesity, diabetes, drug abuse, 

poverty, domestic violence, and suicide. 

2009 Activities 

Teleconference on the National Children’s Study (January 2009)

On January 26, 2009, the HRAC held its quarterly teleconference meeting with Tribal 

delegates and discussed the National Children’s Study1

 (NCS) coordinated by a consortium of 

Federal partners: HHS (including the Eunice Kennedy Shriver Institute of Child Health and 

Human Development, National Institute of Environmental Health Sciences of the National 

Institutes of Health, and CDC); and the Environmental Protection Agency (EPA). The study 

will consist of more than 100,000 children across the United States—following them from 

before birth until age 21; and it will examine important health issues with the goal of improving 

the health and well-being of children for generations to come. The HRAC expressed questions 

and concerns regarding the $22 million dollar study, among which included the following items: 

• The NCS does not appear to over sample for the AI/AN population. 

• Since a cohort was not done, Indian Country knows very little about the study, which is 

expected to be of national importance. 

 

1 https://nationalchildrensstudy.gov 

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• HRAC is concerned about the self-identification method for the 2,000 American Indian 

children and the small number of participants. 

• The study does not appear to sample across diverse groups of Tribal communities. 

• There was no sampling in Alaska, where over 250 Tribes reside and the greatest 

environmental variables exist. 

• HRAC is concerned about how the data will be used that is taken in Indian Country. 

As a result of its concerns, the HRAC requested a briefing on the NCS (See the April 2009 

meeting highlights). 

Discussion Guide

The Discussion Guide was developed and implemented 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 areas. 

Responses to the Discussion Guide were obtained from the following areas: Alaska (61); 

Albuquerque (2); Bemidji (1); California (1); Oklahoma (7); and Portland (14), totaling 86 

survey responses. Of the 86 respondents, 74 (86%) were engaged in health research. 

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 from the Tribes’ perspective 

regarding health concerns, priorities, and the way in which research should be conducted in 

Native communities. Complete survey results are posted on the HRAC website. 

2009 Meetings

The first 2009 HRAC Meeting was held on April 28, 2009, in conjunction with the 11th Annual 

HHS Tribal Budget Consultation meeting at the Hubert Humphrey Building in Washington, D.C. 

The second meeting was held on November 12, 2009 in Tulsa, Oklahoma. 

HRAC notes on the presentations are posted on the HRAC website under HRAC Face-to-Face 

Meeting Notes dated April 28, 2009 and November 12, 2009. 

Highlights from the April 2009 HRAC Meeting included: 

• The HRAC received a briefing from Dr. Peter C. Scheidt, Director of the National 

Children’s Study, and Dr. Jennifer Park, Senior Scientist and Study Center Project 

Officer for the National Children’s Study, Eunice Kennedy Shriver Institute of Child 

Health and Human Development. Dr. Scheidt and Dr. Park provided background 

information on the study and discussed its overall purpose. They also addressed 

questions/concerns raised by the HRAC, noting that the NCS would not oversample for 

any subgroup and that the use of stratified sampling was the reason that Alaska was not 

sampled. 

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• A presentation by Dr. Robert William Blum, Johns Hopkins University, Bloomberg 

School of Public Health, entitled “An American Indian-Alaska Native Youth Health 

Survey: Preliminary Considerations.” The survey will establish baseline data and the 

initial collection of data will serve as a basis for comparisons with subsequent data 

collection efforts. Dr. Blum indicated that a national advisory board would be 

established in the summer of 2009 for the unfunded study. 

• A presentation by Dr. Sarah Hicks, NCAI, on the role of NCAI’s Policy Research Center 

(PRC) as well as its research agenda and current research projects. Puneet Sahota, 

Research Fellow at NCAI PRC, provided an overview of community research regulation 

tools and presented questions for consideration when embarking upon Tribal research 

regulations. 

• An overview by Alison Barlow and Olivia Sloan, Johns Hopkins Center for American 

Indian Health (CAIH), on CAIH and its program offerings. 

• An overview by Dr. Jamila Rashid and Suzanne Heurtin-Roberts on the Federal 

Collaboration on Health Disparities Research (FCHDR). 

• A briefing regarding the Federal Coordinating Council (FCC) for Comparative 

Effectiveness Research (CER), created to coordinate CER and related health services 

research conducted or supported by Federal Departments and agencies, from Dr. Garth 

Graham. 

• Cara Cowan Watts (Oklahoma Area) retained her seat as an HRAC Co-Chair. Kathy 

Hughes (Bemidji Area) was newly elected to serve with Ms. Cowan Watts. 

HRAC's second meeting of 2009 was held on November 12, 2009 in Tulsa, Oklahoma. 

Highlights from the November 2009 HRAC Meeting included:

• An overview of the Cherokee Nation's current health research activities and 

partnerships presented by: Melissa Gower, Group Leader of Health Services and 

Government Relations for the Cherokee Nation; Dr. Gloria Grim, Medical Director, 

Cherokee Nation Health Services; and Sohail Khan, Director of Health Research and 

Co-Chair Cherokee Nation Institutional Review Board (IRB). 

• Representatives from Tribal Epidemiology Centers reported on EpiCenter activities and 

data issues. 

• An update by Dr. Donald Warne (Aberdeen Area) on the National Children’s Study and 

the status of the proposed Great Plains/Alaska Native adjunct study. 

• An overview from Dr. Sarah Hicks regarding NCAI’s Introduction to Research Training 

for Tribal leaders and their Human Resources Research Agenda. 

• An overview of the National Institute on Drug Abuse’s (NIDA) American Indian/Alaska 

Native Coordinating Committee presented by Dr. Kathy Etz. 

• A presentation from Dr. Ralph Bryan, Senior CDC Tribal Liaison for Science and Public 

Health, about current projects, health concerns, and new CDC structure. 

• An overview of AHRQ's current research activities and funding by Wendy Perry, Senior 

Program Analyst. 

• An update by Dr. Garth Graham, Deputy Assistant Secretary for Health at HHS’ Office 

of Minority Health, on FCC CER. 

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2009 HHS National Tribal Budget and Policy Consultation Session

The HRAC developed testimony and Co-Chairs Cara Cowan Watts and H. Sally Smith 

presented at the 2009 HHS National Tribal Budget and Policy Consultation Session in April 

2009. The Co-Chairs offered recommendations regarding research priorities and the health 

disparities plaguing Indian Country. They informed HHS officials about the high and 

disproportionate rates of morbidity and mortality experienced among AI/ANs. The Co-Chairs 

placed special emphasis on the particularly high rate of suicide, recommending immediate 

steps to address the suicide epidemic in AI/AN communities. On behalf of the HRAC, the CoChairs requested that HHS Operating and Staff Divisions make the following areas of research 

a top priority: 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; stroke prevalence/prevention; 

methamphetamine prevalence/prevention; suicide prevention; autoimmune disorders; 

evaluation of the use of emerging technology; and health services research (such as utilization 

of prenatal care, preventable hospitalizations, and emergency room utilization). 

To address the concerns, they recommended that research focus on data quality and accuracy 

to address under-representation of American Indians 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. 

Additionally, they suggested, efforts should be made to support research aims that attempt to 

understand exposure to risk and vulnerability over the lifespan to American Indian health due 

to social determinants such as social exclusion, marginalization and inequality. And research 

should address the complex interactions between health determinants and long term exposure 

to risks unique to American Indians as an indigenous population, they argued. 

The Co-Chairs echoed the HRAC’s sentiment from the previous year’s meeting, that all 

research conducted should be evidence-based and to the extent possible, community-based 

(participatory); and that Tribal Governments were the rightful owners of their respective data 

and therefore all efforts should be undertaken to ensure Tribal Governments are consulted 

before such data is shared with any entity. 

The Co-Chairs closed their testimony by citing current barriers to undertaking research 

activities in Indian Country and possible remedies: 

• The elimination of impediments for collaboration, including information sharing, between 

Tribal EpiCenters and HHS. 

• Increasing cultural sensitivity among researchers. 

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

IHS Health Professionals Scholarship Program and Loan Repayment Program 

(specifically for research positions). 

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

HHS Operating and Staff Divisions. 

• Increasing the amount of comparative data—when research includes a comparison of 

racial and ethnic data that does not include American Indians and Alaska Natives, the 

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HRAC recommended that HHS make 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. 

2009 Outreach Activities

2009 Outreach Meetings 

Co-Chair, Cara Cowan Watts and Leo Nolan (IHS) presented at the Third National Leadership 

Summit on Eliminating Racial and Ethnic Disparities in Health on February 27, 2009. Their 

workshop, Addressing American Indian and Alaska Native Health Disparities into the 21st

Century, focused on health and social concerns that are prevalent throughout Indian Country. 

Wilbur Woodis, OMH, served as moderator. 

 

Governor Norman Cooeyate (Albuquerque Area) represented HRAC at the IHS/Health Canada 

Maternal and Child Health Research Meeting in Albuquerque, New Mexico in conjunction with 

the International Conference on Indigenous Women’s Health and International Meeting on 

Indigenous Child Health. He also presented at the Indian Health Summit in Denver, Colorado. 

Co-Chair, Cara Cowan Watts attended the American Indian/Alaska Native Health Policy 

Conference in Albuquerque, NM on October 22-23, 2009. Ms. Cowan Watts presented at the 

breakout session for Tribal Health Codes and Research Policies. 

HRAC Website 

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. 

Recommendations 

Comparative Effectiveness Research Recommendations 

In response to the Federal Coordinating Council for Comparative Effectiveness Research’s 

request for input regarding defining CER, the HRAC submitted the following recommendations 

on June 15, 2009: 

• Allow time for the Tribal consultation process in order for Tribes to provide their input 

into the FCC CER plan and implementation. 

• Establish separate guidelines and measures for CAM and AI/AN traditional healing 

practices. 

• CER should concentrate in areas of health promotion, disease prevention, and 

community-based interventions. 

• Clinical effectiveness should be the focus of research and not cost effectiveness. 

• CER studies should be adequately powered and not sacrifice statistical significance. (It 

has been noted that in CER minority and disability groups have not been given a broad 

enough population sample. Ref: Debate Heats Up Over CER, Cancer Policy Monitor, 

4/2009). 

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• The Government is planning on making major investments in CER in order to try to 

improve health care and reduce costs. Any research opportunities that are open to 

either state or local health departments or to research universities should also be open 

to Tribal organizations. Tribal organizations hold a special place in the health research 

field and the health care delivery system for AI/AN people. In many cases, Tribal 

organizations—alone or in partnership with other research institutions—will be best 

suited to conduct CER among AI/AN people. Without their participation, it is likely that 

the results of CER will not accurately reflect the AI/AN population. 

• The American Recovery and Reinvestment Act (ARRA) of 2009 sets aside money for 

research that compares the clinical outcomes, effectiveness, and appropriateness of 

items, services, and procedures that are used to prevent, diagnose, and treat diseases, 

disorders, and other health conditions. It is important for the AI/AN community that the 

phrase "items, services, and procedures" be broadly interpreted to include traditional 

healing and other culturally appropriate complementary and alternative treatments. 

• Additional services aimed at primary prevention such as programs to improve access to 

healthy food or otherwise promote healthy lifestyles. 

• The ARRA sets aside money to encourage the development and use of clinical 

registries, clinical data networks, and other forms of electronic health data that can be 

used to generate or obtain outcomes. This is an area where the IHS and Tribal health 

facilities are well suited to participate. It is important that any research opportunities 

open to State Governments or universities also be open to Tribal organizations. 

Beyond that, it is important for the FCC CER to remember that there is a wealth of 

current and historical data available on both treatments and outcomes for IHS 

beneficiaries. The Tribal Epidemiology Centers as well as Tribal researchers are well 

suited to use this data for CER. 

• Inclusion of Native cultural practices/traditional healing in CER monies and health 

outcomes. 

• CER monies/studies should include oversampling on AI/AN populations. 

• The IHS should be provided stimulus monies to provide research grants. 

• The IHS should be at the table as a member of the FCC CER. 

• Tribal consultation should be required as part of the HHS Tribal Consultation Policy and 

the government-to-government relationship that exists. 

• AI/AN’s identities should be defined by enrolled Federally-recognized Tribal citizens and 

not by self-identification; otherwise the data will likely be skewed. 

• The IHS operates a mixed delivery system serving 1.3 million AI/ANs that reflects Tribal 

sovereign choices as to the extent of Tribal participation in the management of these 

resources under the authorities of the Indian Self-Determination Act (PL 93-638 seq. et. 

al.). The IHS delivery system is additionally distinguished by a diversity of levels of 

system vertical integration independent of levels of Tribal participation. It is therefore 

recommended that CER include analysis of the comparative effectiveness of the various 

permutations of IHS system integration and levels of Tribal participation in system 

governance 

Joint Commission Recommendations 

The HRAC responded to a request for feedback from the Joint Commission on cultural 

competence requirements for hospital accreditation. Specifically, the Joint Commission sought 

input on a set of proposed accreditation requirements designed to help hospitals improve 

patient safety and quality of care. The proposal targeted effective communication, cultural 

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competence, and patient-centered care, acknowledging that poor communication due to 

language or cultural barriers leads to “poorer health outcomes.” 

As stated on the Joint Commissions website, the mission of this independent, non-profit 

organization is “to continuously improve health care for the public, in collaboration with other 

stakeholders, by evaluating health care organizations and inspiring them to excel in providing 

safe and effective care of the highest quality and value.” 

The HRAC sent recommendations asking for representation from AI/AN communities; and it 

recommended that additional members be added to the Expert Advisory Panel to include a 

Tribal representative, as well as a representative from IHS. Other recommendations included: 

training and education money should be spent or set aside for hiring local Native community 

members as they understand cultural issues and have a commitment to the community; 

race/ethnicity for AI/ANs should be identified based on enrollment in a Federally-recognized 

Tribe as published by the U.S. Department of Interior’s Bureau of Indian Affairs; and links to 

the IHS and NIHB might provide additional resources for those working with AI/ANs. 

HHS Recommendations to the Secretary 

HRAC sent a letter to HHS Secretary Kathleen Sebelius on July 13, 2009 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 

AI/AN leadership must be put in place throughout 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. In addition, HRAC recommends that 

NIH develop and adopt a meaningful Tribal consultation policy in compliance with the 

HHS Tribal Consultation Policy, which requires that “each HHS Operating and Staff 

Division shall have an accountable process to ensure meaningful and timely input by 

Tribal officials in the development of policies that have Tribal implications.” 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 NIH could have a profound positive impact on the 

development of research policy to address serious medical and behavioral health issues 

plaguing Indian Country. 

• HHS Data Council 

The HRAC asks that the HHS Data Council adopt an HHS-wide Research Policy for 

Indian Country. Recommendations include: 

o HHS-wide minimum standards and requirements for a Tribal data sharing 

agreement. 

o Recognition of diverse Tribal research/data approval and on-going oversight 

mechanisms such as an IRB, Tribal Council, etc. 

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

Indian Country should give preference to proposals from Federally-recognized 

Tribal Nations or proposals which include Federally-recognized Tribal Nations 

and entities serving those communities’ partnerships. 

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o Anyone claiming Tribal identity for the purpose of research or obtaining funds 

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.” 

o Oversampling of AI/AN populations should always be considered in planning 

health research projects. 

o 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). 

o Tribal consultation should occur before the study begins, including planning of 

the study. 

o 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.” 

• 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:

o 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. 

o Oversampling of AI/AN populations should be done. The target number of 2,000 

AIs is not adequate. 

o 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. 

o Sampling protocols promised including preservation of DNA and tissue samples 

must be followed and Tribes educated before, during, and after as an on-going 

partner. 

o Commitment to Tribal sovereignty must be kept. 

o De-identification of data must be reviewed with Tribes. 

o A data sharing agreement with Tribes must be established in partnership with the 

Tribe before the local study commences. 

o Study centers yet to be named could target Indian Country.

• Indian Health Service Scholarships 

The HRAC recommends that IHS Scholarships be limited to AI/ANs 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 

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recipients should be held accountable for their payback period to either IHS or a Tribal 

638 qualified Health Department. 

• HHS American Indian and Alaska Native Health Research Advisory Council 

HHS should continue to fund and support the AI/AN HRAC with additional funding for 

two physical meetings per fiscal year. HRAC meetings provide the opportunity for faceto-face interaction between Tribal leaders, Federal partners, researchers, and other 

stakeholders with the goal of healthy Native communities through health research. 

• 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 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. 

• Federal Collaboration on Health Disparities Research 

The HRAC recommends that the Federal Collaboration on Health Disparities Research 

(FCHDR) work to recruit and involve members from the Department of Interior (DOI), 

Department of Justice (DOJ), and the U.S. Department of Agriculture (USDA). These 

Departments all play a crucial role in the health and well-being of AI/ANs and should be 

part of the discussions on health disparities research. 

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Attachment A: Member and Partner List 

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

 

Kathy Hughes 

Vice Chairwoman, Oneida Nation of Wisconsin 

PO Box 365 

Oneida, WI 54155 

Phone: (920) 869-4428 

Fax: (920) 869-4040 

Email: khughes@oneidanation.org

MEMBERS 

Tribal Officials 

Aberdeen Area 

Delegate: Adrian Pushetonequa 

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

Alternate: Donald Warne 

Executive Director, Aberdeen Area Tribal Chairmen's Health Board 

Alaska Area 

Delegate: Emily Hughes 

Chairperson, Norton Sound Health Corporation 

Alternate: Tim Gilbert 

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

Consortium 

Albuquerque Area 

Delegate: Norman Cooeyate 

Governor, Pueblo of Zuni 

Alternate: Francine Gachupin 

EpiCenter Director, Albuquerque Area Indian Health Board 

Bemidji Area 

Delegate: Kathy Hughes 

Vice Chairwoman, Oneida Nation of Wisconsin 

Alternate: Terrie Terrio 

Tribal Treasurer, Stockbridge-Munsee Band of Mohican Indians

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Billings Area 

Delegate: Tracy (“Ching”) King 

Councilman/At-Large Assiniboine Representative, Assiniboine and Gros Ventre Tribes Fort 

Belknap Indian Community Council 

Alternate: Bill Whitehead 

Council Member, Fort Peck Tribal Executive Board 

California Area 

Delegate: Reno Franklin 

Chairman, California Rural Indian Health Board 

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: Seeking New Alternate 

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 

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Alternate: Michelle Ortega 

Councilwoman, Tohono O'odham Nation 

Tribal Organizations 

Direct Services Tribes Advisory Committee 

Delegate: Darrell Flyingman 

Governor, Cheyenne and Arapaho Tribes 

Alternate: Andrew Joseph, Jr. 

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

National Congress of American Indians 

Delegate: Jefferson Keel 

President of NCAI and Lt. Governor of Chickasaw Nation 

Alternate: Sarah Hicks 

Director, Policy Research Center, NCAI 

National Indian Health Board 

Delegate: H. Sally Smith 

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

Corporation 

Alternate: Stacey Bohlen 

Executive Director, NIHB

Tribal Self-Governance Advisory Committee 

Delegate: Lloyd Hanks 

Council Member, Duck Valley Shoshone Paiute 

Alternate: Mickey Peercy 

Executive Director of Health Services, Choctaw Nation of Oklahoma 

FEDERAL PARTNERS 

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: Peggy Halpern 

Program Analyst 

Centers for Disease Control and Prevention 

Delegate: Ralph Bryan 

Senior Tribal Liaison for Science and Public Health 

Alternate: Pelagie (“Mike”) Snesrud 

Senior Tribal Liaison for Policy and Evaluation 

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Indian Health Service 

Delegate: Leo Nolan 

Program Analyst for External Affairs 

Alternate: Alan Trachtenberg 

Research Director 

Intergovernmental Affairs 

Delegate: Stacey Ecoffey 

Principal Advisor for Tribal Affairs 

National Institutes of Health 

Delegate: Ileana C. Herrell 

Director, Division of Scientific Strategic Planning & Policy Analysis 

The Office of Minority Health 

Delegate: Garth Graham 

Deputy Assistant Secretary for Health 

Alternate: Wilbur Woodis 

Special Assistant on Native American Affairs 

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