Data on Health and Well-being of American Indians, Alaska Natives, and Other Native Americans, Data Catalog

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Contents

1. Background
2. Catalog Description
   1. Catalog Organization
   2. Methodology
   3. Using These Data Sources
3. Data Sources by Topical Area
4. Data Sources by Subpopulation Coverage
5. Listing of Data Sources
6. Other Data Sources
7. Other Reports

Background

The Study of Data on Health and Well-being of American Indians, Alaska Natives, and other Native Americans (AI/AN/NAs) was funded by the Department of Health and Human Services' (DHHS) Office of the Assistant Secretary for Planning and Evaluation (ASPE) to address the need for systematic information about available data sources pertaining to the health and well-being of AI/AN/NA populations. This study examined numerous existing databases-federal surveys, research survey databases, state and community surveys, and administrative databases-that include information on AI/AN/NA population characteristics and measures of health and well-being. The study team documented the nature of these databases, including their strengths and limitations, and collated the information into this data catalog. In the course of a systematic review, the study also shed light on the limitations and gaps in available data on the health and well-being of AI/AN/NA populations. The second component of this project, a paper entitled Report on Gaps in Data, Initiatives Underway, and Strategies for Improving AI/AN/NA Data for Policy and Research describes these limitations and gaps and identifies possible strategies to improve the quality, usefulness, and population and geographic coverage of data on AI/AN/NA health and well-being.⁽¹⁾

This study continues DHHS' focus on improving data collection concerning the health and well-being of racial and ethnic populations. The current study builds on previous activities, including the 1999 Joint Report of the DHHS Data Council's Working Group on Racial and Ethnic Data and the Data Workgroup of the DHHS Initiative to Eliminate Racial and Ethnic Disparities in Health entitled Improving the Collection and Use of Racial and Ethnic Data in DHHS. It also expands on the activities conducted during an earlier study for ASPE entitled Assessment of Major Federal Data Sets for Analyses of Hispanic and Asian Pacific Islander Subgroups and Native Americans.⁽²⁾

This data catalog focuses on data sources that provide information on the health and well-being of AI/AN/NA populations. The catalog is intended for use by a wide variety of users including AI/AN/NA communities; researchers from government, academic institutions, and foundations; and policy makers. The catalog provides overview information on possible data sources that could be used to describe the need for services, analyze trends in well-being and health, or illuminate disparities. Some of the data sources profiled in this catalog supply only published tables for the user. Others can be used by those with the necessary analytical skills and tools to do analysis on specific questions. The profiles of data sets presented in this catalog are not meant to provide instruction for use of the data in addressing specific research questions, but instead to serve as a source of general information that will help potential users determine if further investigation of a data source is warranted. The catalog also provides contact information and data source locations for conducting further in-depth reviews of targeted data sources.

The populations covered by this catalog are American Indians, Alaska Natives, and other Native Americans including Native Hawaiians and other Pacific Islanders. While each data source profiled here may collect information on the race of the respondents differently, it is helpful to keep in mind some generally accepted definitions of the key racial groups included in this catalog. American Indians (AI) and Alaska Natives (AN) are defined by the U.S. Census Bureau as "people having origins in any of the original peoples of North and South America (including Central America), and who maintain tribal affiliation or community attachment."⁽³⁾ For purposes of measuring, monitoring, and developing approaches to reducing disparities in health and well-being and for research on a range of issues related to health and well-being, there may be interest in information on the combined AI/AN group for some purposes and in information on specific subgroups of the population for other purposes. For this reason, this data catalog includes information on the availability of data on the combined AI/AN category as well AI and AN as separate groups and AI/AN who are members of federally or state-recognized tribes. The catalog also notes the availability of information on those who self report that they are AI/AN alone or AI/AN in combination with other races. Finally, because there may be interest in identifying those American Indians who live on reservations, the reviewers examined each data source to determine if reservation of residence was available in that data source.

The Native Hawaiian (NH) and other Pacific Islander (PI) population includes those who are members of any of the native peoples of Hawaii and native peoples of Pacific Insular Areas that are dependent territories of the U.S. (Guam, American Samoa, and the Northern Mariana Islands) or Freely Associated States for which the U.S. provides defense, funding grants, and social services to its citizens (Micronesia, Palau, and the Marshall Islands). Within the NH/ PI population, there are several ethnically distinct categories. Polynesians, including Native Hawaiians, Samoans, Tongans, Tahitians, Tuvaluans, and Maori, are the largest group, accounting for 65 percent of all NH/PIs. Micronesians, including Guamanians, Marshallese, Palauans, residents of the Northern Mariana Islands and of the Federated States of Micronesia, are 13 percent of all NH/PIs. Melanesians, including Fijians, New Caledonians, Solomon Islanders, Vanuatuans, and Papua New Guineans, are 2 percent of this population.⁽⁴⁾ In 1997, the Office of Management and Budget established a new racial category, Native Hawaiian and Pacific Islander (NH/PI), and required that federal agencies collect information on this new race category by 2003. The 2000 Census included the NH/PI race category and, as a result, provides an initial baseline for assessing socioeconomic status and some limited health measures of this group.⁽⁵⁾

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Catalog Description

As described above, this catalog is meant to provide overview information on a wide variety of data sources that can address health and well-being issues for AI/AN/NA populations. It is not meant to be an exhaustive listing of all data available on AI/AN/NA populations concerning health and well-being. Time and resource limitations prevented coverage of the entire universe of data sources that might be used to address these topics. To ensure that the catalog would provide broad coverage of the major topics of health and well-being, as a first step, the project staff, in consultation with ASPE, representatives of the DHHS Data Council's Racial and Ethnic Data Working Group (a workgroup for this project), and a small AI/AN/NA workgroup developed a detailed list of policy issues within the categories of health and well-being that should be covered in the catalog. The purpose of this policy list was to guide decision making about the content of the data sources that should be included. The project staff attempted to maximize coverage of the policy issues and avoid redundancy in the data sources being reviewed. This list of policy issues is presented in Figure 1.

Beyond policy parameters, the project team, in consultation with ASPE, members of the DHHS workgroup, and the AI/AN/NA workgroup, also established the following technical parameters for the data catalog:

• Data should be from a survey, program reporting system, or registry;
• Data should be quantitative in nature;
• Data source must allow user to identify people who are AI/AN/NA or focus on a specific geographic region with a large AI/AN/NA population;
• Data source must be available to researchers (as data or as requested analyses) or have extensive published tables and reports available;
• Contact and location information regarding the data source must be available;
• Documentation of data collection methods should be available;
• Data should not have been collected primarily to fill advocacy needs, lobbying purposes, or to support corporate interests;
• Total unweighted AI/AN/NA population in data source should be available, and the sample size must be adequate for analyses;
• Coverage of data source must be either national or focus on a specific AI/AN/NA subpopulation only (e.g., single tribe, Pacific Islanders), or consist of a smaller geographic area of clear relevance to the AI/AN/NA population; and
• Timeframe of the data source should be mid-1990s or later (unless a strong argument can be made to include older data).

The review of data sources conducted based on these parameters did not include an assessment of the quality of the data source. A careful examination of the actual data to make such an assessment was beyond the scope of this effort. Instead, reviewers sought to provide sufficient information about the data source to allow users to make an initial assessment of the potential usefulness of the data source for their purposes. We strongly recommend that potential users thoroughly examine the documentation and data from these sources to make their own assessments of the quality of the data.

2.1 Catalog Organization

The data catalog is organized into six sections beyond this introduction. Each of these sections is described in the bullets below:

• Section 3 provides a listing of the data sources included in the catalog sorted by key policy areas. The data sources listed in each section are particularly appropriate for answering questions in the topical area but may also contain data in other areas; therefore, data sources may be listed under more than one policy area.

  Under each policy topic, data source name and corresponding page number are presented. The page number can be used to find the detailed information on the data source in Section 5.

• Section 4 provides a listing of data sources included in the catalog sorted by subpopulations identified and analyzable (e.g., all AI/AN/NA, American Indians and Alaska Natives, Pacific Islanders, Native Hawaiians, named tribes or communities). Page number is also included.
• Section 5, which is the largest section of this report, provides in depth profiles of all data sources presented alphabetically. A more detailed description of topics covered in these detailed profiles is presented below.
• Section 6 includes a list of data sources identified but not reviewed for the catalog. This list is also alphabetical and is briefly annotated with reasons the data sources were not included in the review and selected information collected about the data set prior to its exclusion.
• Section 7 includes reference information on a set of reports identified during this review that ASPE and the project team believe might be of particular interest to catalog users. These reports are generally of three types: reports concerning data that are not directly available to potential users but on which there are published detailed analytical reports, reports that are data compilations covering important issues using multiple data sources, and selected reports concerning the profiled data sources identified for review. This list of reports is not meant to be exhaustive but represents potentially useful information obtained in the course of assembling this catalog.
• Appendices to this catalog include a glossary of terms, a brief discussion of issues related to data aggregation, and the review protocol used to screen and profile the data sources.

As noted above, Section 5 provides detailed profiles of each data source. Included in the detailed profiles are 25 possible elements. If they are not relevant to the data source, elements are not included in the profile; for example, if no information on AI/AN/NA subgroups is available, this field is not shown in the profile. The 25 possible elements for a data source profile include:

1. Name of Data Source
2. Sponsor — documents the agency or funding source for the data collection.
3. Description — provides a summary description of the purpose of the data collection and the general content of the data set.
4. Data Type(s) — indicates whether the data source is a survey, registry, or program reporting database.
5. Relevant Policy Issues — draws from the list of policy issues described above.
6. Unit of Analysis — describes the level(s) at which the data were collected (e.g., individuals, families, households, farms). This information can help users determine the type of analysis that can be conducted and the research questions that can be asked.
7. Identification of AI/AN/NA — provides detailed information on how data about race and ethnicity were collected for this data source. Where possible, question or form field text is included.
8. AI/AN/NA Population in Data Set — provides the unweighted count of American Indian, Alaska Native, or other Native American persons or families included in the data source. This information is provided in as much detail as is available (e.g., for American Indians only).
9. AI/AN/NA subpopulations — provides information on subpopulations for which analysis is possible (e.g., American Indian alone, tribal affiliation).
10. Geographic Scope — indicates the level of geographic analysis possible (e.g., national only, state, region).
11. Date or Frequency — provides information on the date of data collection and how frequently, if relevant, the data collections are repeated.
12. Aggregation — this section is included only where it is necessary or particularly relevant to consider combining data collections across years. For example, when the AI/AN/NA sample size is extremely small in one year, it may be necessary to combine multiple years of data to obtain a sample size appropriate for statistical analysis. Or, when the data are collected in segments across several years, it may be desirable to aggregate across the years to provide full population coverage.
13. Data Collection Methodology — provides some detail on how the data are collected (e.g., telephone, paper questionnaire.)
14. Participation — documents whether participation in the data collection effort was mandatory or optional, and may provide information on the use of incentives.
15. Response Rate — documents the response rate or coverage of the data collection. Unweighted response rates are provided where possible as these are the most directly interpretable. Where only weighted response rates are available, they are reported and, in most cases, briefly explained.
16. Sampling Methodology — provides detail on how individuals, household, or other foci were selected to participate in the data collection. This is usually only appropriate for surveys and, rarely, program reporting databases.
17. Oversample of AI/AN/NA Population — addresses the degree to which AI/AN/NA persons were purposely selected in excess of what would occur randomly.
18. Analysis — includes information important to conducting statistical analyses of the data; for example, information on the standard errors of any estimates, the effective sample size, design effects, and description of the power available to detect differences in the data.
19. Authorization — describes the authorizing legislation for the data collection, where appropriate.
20. Strengths — summarizes the key strengths of the data source for AI/AN/NA research, as identified by the reviewers.
21. Limitations — summarizes the key limitations of the data source identified by the reviewers.
22. Other — contains other important information identified by the reviewer.
23. Access Requirements and Use Restrictions — describes the steps and cost involved in accessing, if possible, the data set.
24. Contact Information — typically provides a name, telephone number, address, and email for the office responsible for the data collection. However, in some cases only a name is provided, and in other cases, only an email or Internet link is provided.
25. Reports of Interest — provides a non-exhaustive list of key reports related to the data source identified in the course of the project.

2.2 Methodology

The approach used to compile the data catalog consisted of four steps: initial listings of data sources, screening of data sources, reviewing of the data sources, and developing the catalog profiles. Each of these steps is described in more detail in the paragraphs that follow.

Developing the initial listings of data sources. The project team (in consultation with ASPE, our project consultants, and our small AI/AN/NA workgroup) initially developed a substantial list of potential data sources drawing from the following sources:

• Web sites of all federal departments (e.g., Departments of Justice, Defense, Agriculture) with information on publicly available data sets and on administrative data sets that could be made available from each of these departments;
• Data repositories including National Library of Medicine, the Interuniversity Consortium for Political and Social Research (ICPSR) at the University of Michigan, and the University of Virginia to identify additional data sources located in these repositories that may be appropriate;
• Web site developed by the DHHS Data Council that provides a Directory of Health and Human Services Data Resources listing available DHHS data resources (http://aspe.hhs.gov/datacncl/datadir);
• Web site developed by DHHS' Office of Minority Health (OMH) and the Office of the Assistance Secretary for Planning and Evaluation (ASPE) under the auspices of the DHHS Data Council entitled Health and Human Services Statistics About Minorities (http://www.hhs-stat.net/omh/index.htm);
• Consultation with members of the DHHS Data Council's Racial and Ethnic Data Working Group who served as a workgroup for this project; and
• Consultation with project consultants and a small AI/AN/NA workgroup representing the American Indian and Native Hawaiian communities.

As the project progressed, data sources were continually added to the review list as they were discovered or recommended to the project team. In all, a total of 152 possible data sources were considered.

Screening of data sources. Data sources were initially screened by reviewers to determine their appropriateness for inclusion in the catalog. The screening protocol comprised the first few pages of the review protocol located in Appendix C to this document. This screening protocol ensured that the data sources to be fully profiled and considered for inclusion in the catalog met the technical parameters listed in Section 2 above. Specifically, the reviewers provided the following information on each data source screened:

• Name of data source being reviewed;
• Sponsoring agency;
• Policy issue relevant to data source;
• Brief description of data set;
• Whether the data source identified people who are AI/AN/NA;
• Availability of data set to researchers;
• Cost associated with use of the data set;
• Relevant contact and location information regarding this data source;
• Source of funding for data set;
• Total unweighted AI/AN/NA population in data source and if unweighted n < 100, feasibility of combining across multiple iterations of data collection to increase the size of the population;
• Geographic coverage of the data set;
• Timeframe of the data set;
• Nature of data source (i.e., survey, program reporting data, or registry) and availability of relevant documentation; and
• Qualitative or quantitative nature of data.

Based on this information, the project team and ASPE project officers determined whether the data source should be fully profiled and likely included in the catalog, included in the list of non-reviewed data sources (Section 6), or omitted entirely.

Reviewing the data sources. Data sources appropriate for profiling were then researched and the data were collected about as many of the 25 elements as possible by the initial reviewers. (See Section 2.1 above.)

For some data sources, not all of this information was available through the Internet, published materials, or direct contacts with employees at the agency or data collection facility. After a reasonable effort, reviewers were instructed to note that missing information could not be obtained or was unavailable. Where the information on any of these categories is not applicable to the data set, the category will not appear in the profile (e.g., weighting information for registries) but when information important to the assessment of the utility of the data source was not available, the category remains in the profile and is duly noted.

Initial reviews were evaluated by senior project staff and revisions were made in light of their comments and questions. These revised reviews were then converted to the catalog entries presented here. In summary, a total of 152 possible data sources were considered. Due to resource issues and some early elimination of unusable data sources from the review process, 110 of the 152 data sources were screened. From the 110 screened data sources, 68⁽⁶⁾ data sources met the criteria for inclusion and are fully profiled in the catalog.

After all data reviews were completed, the data source profiles, where possible, were forwarded to the agency or point of contact for that data source for review. Westat received comments or approval on 76 percent of the data profiles in this catalog. After agencies and/or points of contact completed their review of the data source profiles, we revised many of the profiles in response to their comments. Westat then submitted the revised data catalog to members of the project DHHS workgroup, the project AI/AN/NA workgroup, the five Westat project consultants, and senior DHHS staff for review. Many of their comments and suggestions were incorporated into the final catalog. A list of the data sets by the different sponsoring agencies is included in Appendix D.

2.3 Using These Data Sources

The data sources described in this catalog fall into four broad categories: publicly available data sets, restricted use data sets, published tables (with or without on-line tabulation capability), and published tables with special tabulations available. Each of these data source types is described briefly below.

Publicly available data sets are collections of raw data records, usually in numeric format that can be downloaded or transmitted by disk, CD, or email to users for analysis. These may contain one record per person, per interaction, or per household. The researcher can access the data in these data sets in order to seek answers to specific questions he/she has. However, analysis of these data sets requires the appropriate computer equipment, a data analysis program (e.g., SAS, SPSS), and a data analyst skilled in handling raw numeric data. Additionally, analysis of some datasets from research efforts that used complex sampling procedures to select respondents may require the use of software designed to correctly estimate variances, such as WesVar or SUDAAN. These data are termed "publicly available" because all identifying information has been removed to allow their use by researchers other than those who collected the data. Publicly available data may be free to users or there may be a fee for acquiring the data. In some cases, potential users may have to complete a data access form and confidentiality agreement. Some examples of publicly available data sets included in this catalog are the American Housing Survey, the National Health Interview Survey, and the Adoption and Foster Care Analysis and Reporting System.

Restricted use data sets are also collections of raw data records that researchers can analyze in a way similar to the publicly available data sets. They also require computer equipment and special software to analyze. They differ from publicly available data sets in that their use is carefully monitored and restricted. Usually, these restrictions are in place to protect confidential information stored in the data set (e.g., names, addresses, income). Holders of restricted use data sets always require potential secondary users to complete a data access agreement. Some data sources require that potential users also submit a proposal for how they will use the data (e.g., research questions to be addressed), proof of financial support for the analyses, and personal information on the users. Some sources may also require that the users perform their analyses in a designated location. There may or may not be a charge for access to these data sets. Some examples of restricted use data sets included in this catalog are the National Survey of Family Growth and the American Community Survey (full sample).⁽⁷⁾

In some cases, data sources that will not permit access to the raw data, or have extremely limited access to the raw data, have developed on-line analytical capability that will allow public users to conduct some analyses on their own. Users may or may not have full access to the data and types of analyses may be restricted. One example of a data source that allows very limited access to the data but has on-line analytical capabilities included in this catalog is the American Community Survey (full sample).

Data sources that supply only published tables will not allow secondary users access to the raw data. Once the data are collected and analyses are completed, large tabular volumes containing the results from the analyses are published. Potential users can report only the information presented in these tables. For this catalog, these data sources are included only if the published tables have been determined to be of use to researchers and policy makers interested in issues related to the health and well-being of American Indians, Alaska Natives, or other Native Americans. Some examples of data sources that supply only published tables included in this catalog are the Pediatric Nutrition Surveillance System and the Pregnancy Nutrition Surveillance System.

Data sources that both supply published tables and conduct special request tabulations typically do not allow users access to the raw data and have large published tabular volumes. They, however, also have staff that can perform additional analyses at user request to address questions not covered in the tabular volume. The complexity of the additional analyses that can be conducted may vary across sources as will the possible charge for these special requests. Two examples of data sources included in this catalog that conduct special request tabulations are the Resource Patient and Management System, which is the program reporting database for the Indian Health Service, and the Census of Agriculture.

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Data Sources by Topical Area

The table below groups the 68 data sets included in this catalog by the primary identified policy issue related to the data set. The breakdown of the primary policy issues are as follows:

• Child well-being (4 data sets)
• Demographic and economic indicators (3 data sets)
• Economic well-being (6 data sets)
• Education (7 data sets)
• Elder well-being (2 data sets)
• Family well-being (4 data sets)
• Health policy issues (30 data sets)
• Housing issues (3 data sets)
• Justice system issues (7 data sets)
• Military service/Veterans issues (1 data set)
• Transportation (1 data set)

As many of these data sources cover a variety of topics, Table 1 also includes additional policy issues that are relevant to the data set.

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Data Sources by Subpopulation Coverage

The 68 data sets included in this catalog vary in the way AI/AN/NA individuals are identified. Race is directly self-reported by the respondents or the respondents' legal guardian (if the focal respondent is a minor) in 35 of these studies. Twenty-eight of these studies obtain race information from administrative records (e.g., enrollment forms, patient files). Five of the data sets do not identify AI/AN/NA individuals.

Although there is some variation in the categories used to identify AI/AN/NA individuals, the majority of the studies in this catalog use the broader categories "American Indian or Alaska Native" and "Native Hawaiian or other Pacific Islander." These broad categories meet the minimum racial classification standards set by the Office of Management and Budget (OMB)⁽⁸⁾ . Table 2 below lists the data sets by the subpopulation coverage for the American Indian or Alaska Native racial category, while Table 3 lists the data sets by the subpopulation coverage for the Native Hawaiian or other Pacific Islander subcategory.

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Other Data Sources

The following list describes data sources that were considered but not profiled for the catalog. Reasons for excluding data sources include the inability to identify AI/AN/NA individuals in the data source; a very limited number of AI/AN/NA individuals in the data source; lack of relevance to the identified key policy issues; extended length of time since the study was conducted; or data unavailable in any form for independent research. This list describes some basic information about these data sources and includes the reason(s) for excluding each data set.

Alcohol and Drug Services Study

This study involves a drug treatment facility and client sample survey, in which data are collected to estimate the length of a patient's stay, the cost of treatment, and to describe post-treatment status of clients. This study is excluded from the catalog as there are only 59 AI/AN individuals identified in the data set.

Additional information about this study can be found at: http://www.oas.samhsa.gov/ADSS/ADSS2ClientCB.pdf

Drug Abuse Treatment Outcome Study: Adolescent (DATOS-A)

The study was designed to determine the outcomes of drug abuse treatment delivered in typical community-based programs by examining the role of treatment outcomes and program type, client characteristics, treatment received, therapeutic approaches, and provision of aftercare. Information was collected on a small number of AI/AN individuals, but these individuals cannot be identified in the data set.

For more information about this study, contact:
SAMHDA/ICPSR
The University of Michigan
P.O. Box 1248
Ann Arbor, MI 48106-1248
SAMHDA Helpline: 1-888-741-7242
e-mail: samhda-support@icpsr.umich.edu

Drug and Alcohol Services Information System (DASIS)

This system is part of the National Directory of Drug and Alcohol Abuse Treatment Programs and the online Substance Abuse Treatment Facility Locator. It was excluded from this catalog because of its focus on facilities rather than individuals or families.

Additional information about the DASIS can be found at: http://oas.samhsa.gov/dasis.htm#DASISinfo

Evaluation of the Tribal Strategies Against Violence (TSAV) Initiative in Four Tribal Sites in the United States, 1995

This study was designed to develop comprehensive strategies in tribal communities to reduce crime, violence, and substance abuse. Approximately 90 interviews were conducted in four locations. Due to the limited number of sites and respondents and extremely limited access to the data, this study is excluded from the catalog.

Questions regarding this study can be addressed to:
Director
National Archive of Criminal Justice Data
Inter-University Consortium for Political and Social Research
Institute for Social Research
P.O. Box 1248
University of Michigan
Ann Arbor, MI 48106-1248

Family Data on Public and Indian Housing

This study of public and Indian housing projects and their tenants is 13 years old. The records are summaries for housing projects that do not provide individual-level information. Also, there is little documentation.

Questions regarding this study can be addressed to:
Information Services Division of Public and Indian Housing
(202) 708-1445

Gambling Impact and Behavior Study, 1997-1999

This study on the gambling behavior of American adults and youth and the impact of gambling facilities on local economies is excluded because it does not identify people who are AI/AN/NA, nor does it focus on a specific geographic region with a large AI/AN/NA population.

The data, codebooks, and other documentation are available at: http://www.icpsr.umich.edu/cgi-bin/bob/newark?study=2778&path=SAMHDA

Hawaii Student Alcohol, Tobacco and other Drug Use Survey

The purpose of this study is to assess the incidence and prevalence of alcohol, tobacco, and other drug use among students in grades 6 through 12 throughout the State of Hawaii. Results are based on student responses from public, private, and charter schools. The 2003 data set contains answers from 4,912 Native Hawaiian students. However, the Alcohol and Drug Abuse Division (ADAD) of the Hawaii Department of Health does not release this data for use by researchers.

Additional information about this study can be found at:
Alcohol and Drug Abuse Division
601 Kamokila Blvd.
Kapolei, Hawai'i, 96707
(808) 692-7506
http://www.hawaii.gov/health/substance-abuse/prevention-treatment/survey/adsurv.htm

Hawaiian Community Survey

This is an annual survey of households in the state of Hawaii in which at least one member is identified as Hawaiian. The survey was conducted from 2001 to 2005 as part of an effort to assess the true educational needs in Hawaii. The survey contains information on family well-being, childcare arrangements for preschool-age children, obstacles and achievements among school-age children, and continuing educational pathways among adults. At this time, there is no public use data file available for researchers, although the data may become available in the future.

More information about this study can be found at: http://www.ksbe.edu/pase/researchproj-hicomsrvy.php

Head Start Family and Child Experiences Survey (FACES)

This study provides longitudinal information on a periodic basis on the characteristics, experiences, and outcomes for children and families served by Head Start. The study does not include American Indian/Alaska Native Head Start Programs and does not identify AI/AN/NA as one or more separate race categories.

More information about this study can be found at: http://www.acf.hhs.gov/programs/opre/hs/faces/index.html

Health and Diet Survey

This periodic telephone survey measures and monitors public awareness, knowledge, attitudes, and reported behavior related to food and nutrition. Although the survey includes a race category for American Indians/Alaskan Natives, the number in this category is so small (n<100) that it is combined with other small categories into "other" for the public use data set. The survey also does not lend itself to analysis of a specific geographic region relevant to the AI/AN/NA population because of its small size (N=1,798).

Additional information regarding this study can be found at: http://www.cfsan.fda.gov/~comm/crnutri3.html#demog

Medicare Current Beneficiary Survey

This survey of Medicare beneficiaries residing in the United States and Puerto Rico contains very few AI/AN/NA cases in the sample (n=36 for the last round of data collection) and aggregation across years is not recommended.

Additional information on this study can be found at: http://www.cms.hhs.gov/apps/mcbs/

Monitoring the Future: A continuing study of American youth

This ongoing study of the behaviors, attitudes, and values of American youths contains very few American Indian (AI) respondents (i.e., approximately 1 percent of the grade 12 samples). For this reason, the public use data sets and restricted-access data sets do not contain an indicator for AI in the data set.

Additional information regarding this study can be found at: http://www.monitoringthefuture.org/

National Health and Nutrition Examination Survey (NHANES)

This survey collects data on the health and nutritional status of children and adults in the U.S. Because there is no oversample for Native American/Alaskan Natives in the NHANES, the sample of AI/AN/NA is very small and is grouped into the "other" category in the public use files.

Additional information regarding this study can be found at: http://www.cdc.gov/nchs/nhanes.htm

National Immunization Survey (NIS)

Data from the NIS are used to produce timely estimates of vaccination coverage rates. The data do not identify the AI/AN/NA populations of interest for this catalog, as the public-use data files do not identify AI/AN/NA individuals.

Additional information regarding this study can be found at: http://www.cdc.gov/nis/

National Longitudinal Survey of Youth

This study focuses on the labor market experiences of American youth. The study included an oversample of blacks, Hispanics, and disadvantaged whites. However, the sample of AI/AN/NA individuals is too small to identify as a separate racial category in the data set.

Additional information regarding this study can be found at: http://www.bls.gov/nls/nlsy97.htm

National Survey of Substance Abuse Treatment Services

This study is a compilation of data collected from facilities and is used to update the National Directory of Drug and Alcohol Abuse Treatment Programs and the online Substance Abuse Treatment Facility Locator. This study was excluded from this catalog because its focus on facilities rather than individuals or families.

Additional information regarding this study can be found at: http://oas.samhsa.gov/dasis.htm#nssats2

Native Hawaiian Children and Families - Provider Survey and Consumer Survey

The goal of the Consumer Survey was to gather information on consumers' perceptions of the services they receive from programs located in their communities, while the goal of the Service Provider Survey was to gather information from community agencies about their programs and the services they provide to Native Hawaiian children and families. It could not be ascertained whether the data from this study are publicly available.

Additional information regarding this study can be found at: http://uhfamilydata.hawaii.edu/hi_child_ed/hi_child_ed.asp

Navajo Health and Nutrition Survey

The Navajo Health and Nutrition Survey was conducted from 1991 to 1992 to assess the health and nutritional status of Navajo Reservation residents using a population-based sample. The data do not appear to be available in any format.

Property Owners and Managers Survey (POMS)

The Property Owners and Managers Survey (POMS) was designed to learn more about rental housing and the providers of rental housing. A nationwide sample of approximately 16,300 housing units that were rented or vacant-for-rent in the 1993 American Housing Survey National Sample (AHS-N) was selected, and a questionnaire was mailed to the property owner, manager, or other agent of the owner of each property containing a selected unit. This study is excluded because there are very few AI/AN/NA respondents in the data set and the data cannot be combined with other data to increase the number of AI/AN/NAs. In addition, the survey content focuses on the characteristics of the rental properties that the respondents own or manage, not the personal dwellings of the respondents.

Contact the Financial and Market Characteristics Branch at (301) 763-3199 or visit ask.census.gov for further information on Property Owners & Managers Survey (POMS) Data. The actual data are hosted on-line by HUDUSER and are available for downloading from the following site:  http://www.huduser.org/datasets/poms.html

Social Security Administration Benefits and Earnings Public Use File

The 2004 Benefits and Earnings Public-Use File consists of a 1 percent random, representative sample of records of Old-Age, Survivors, and Disability Insurance beneficiaries who were entitled to receive a Social Security (OASDI) benefit for December 2004, and all benefit information is as of December 2004. This file does not contain any racial indicators.

More information about this study can be found at: http://www.socialsecurity.gov/policy/docs/microdata/earn/index.html

Study of Tribal and Alaska Native Juvenile Justice Systems in the United States, 1990

This congressionally-mandated analysis of tribal juvenile justice systems was conducted in 1990-1992. We could not find any indication that these data are available to researchers.

Suicide and Risk Behaviors in an Incarcerated American Indian Population in the Northern Plains [United States], 1999-2000

This multi-part study was an evaluation of five intake screening protocols in a county jail in the Northern Plains. The study is being excluded from the catalog because it was designed only to evaluate and compare the five protocols and the data collected cannot be combined to facilitate other analyses.

Questions regarding this study can be addressed to:
Director
National Archive of Criminal Justice Data
Inter-university Consortium for Political and Social Research
Institute for Social Research
P.O. Box 1248
University of Michigan
Ann Arbor, MI 48106-1248

Survey of Active Duty Personnel

This study focuses on the experiences, attitudes, and demographic characteristics of all Army, Navy, Marine Corps, Air Force, and Coast Guard active-duty members. Although there is a public use data file available for this study, AI/AN individuals can not be identified and geographic analysis of regions specific to this population is not possible.

For more information concerning this study, contact Dr. Jim Caplan at 703-696-5848.

Survey of American Indians and Alaska Natives (SAIAN)

The National Medical Expenditure Survey (NMES) series provides information on health expenditures by or on behalf of families and individuals, the financing of these expenditures, and each person's use of services. Conducted in 1987, the Survey of American Indians and Alaska Natives (SAIAN) was designed in collaboration with the Indian Health Service (IHS), and used the same data collection instruments, interview procedures, and time frame as the NMES Household Survey component. However, the SAIAN differed from the Household Survey in several respects. The SAIAN sample was interviewed only three times and was not given the supplements on long-term care, caregiving, and care-receiving. Also, SAIAN respondents were asked additional questions on topics such as use of IHS facilities and traditional medicine, and were given a modified self-administered questionnaire with separate versions for adults and children. Interviewers for the SAIAN were mainly American Indians or Alaska Natives, and about 20 percent of the interviews were not conducted entirely in English. Of these, approximately 40 percent were conducted entirely in the native language of the respondent. Data were collected on 7,071 AI/AN persons in the eligible dwelling units.

Although the topic of this study is of clear relevance to the AI/AN population, this study is excluded from this catalog as these data are nearly 20 years old and cannot be combined with other data.

For more information about this study, contact ICPSR User Support at netmail@icpsr.umich.edu or call (734) 647-2200 for information about accessing ICPSR data.

Survey of Health Related Behaviors among Military Personnel

This study provides comprehensive and detailed estimates of the prevalence of alcohol, illicit drug, and tobacco use and the negative effects of alcohol use among active-duty personnel. Although there is a public use data file available for this study, AI/AN individuals can not be identified and geographic analysis of regions specific to this population is not possible.

Questions regarding this study can be addressed to:
LTC Lorraine Babeu, Ph. D., CCC-A
Office of the Assistant Secretary of Defense (Health Affairs)
Tricare Management Activity
Health Program Analysis & Evaluation
5111 Leesburg Pike, Skyline 5, Suite 510
Falls Church, VA 22041-3206
Office: (703) 681-3636 DSN: 761-3636
Fax: (703) 681-3682

Survey of Income and Program Participation (SIPP)

The purpose of this study is to collect source and amount of income, labor force information, program participation and eligibility data, and general demographic characteristics to measure the effectiveness of existing federal, state, and local programs; to estimate future costs and coverage for government programs, such as food stamps; and to provide improved statistics on the distribution of income and measures of economic well-being in the country. However, the data files use the following race categories: White alone, Black alone, Asian alone, and Other. There is no way to identify AI/AN/NA individuals in the data set.

More information about SIPP can be found at: http://www.bls.census.gov/sipp/

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Other Reports

During the course of constructing the data catalog, the project team identified a number of useful reports that are listed below. This section is not meant to serve as a comprehensive listing of reports relevant to the topic of this catalog, but rather to serve as a potentially useful resource for users of the catalog.

1. American Indian and Alaska NativeChildren: Findings From the Base Year of the Early Childhood Longitudinal Study, Birth Cohort (ECLS-B). 2005. Flanagan, K., and Park, J. (NCES 2005-116). U.S. Department of Education. Washington, DC: National Center for Education Statistics
2. American Indian and Alaska Native Roundtable on Long Term Care: Final Report 2002. Roundtable Report Prepared by: Jo Ann Kauffman, Kauffman and Associates, Incorporated, 425 West First Avenue, Spokane, WA.
3. American Indians and Crime. Lawrence A. Greenfeld and Steven K. Smith, BJS Statisticians. February 1999, NCJ 173386 http://www.ojp.usdoj.gov/bjs/abstract/aic.htm
4. American Indian Reservations: Montana, North Dakota, and South Dakota. Pilot Project. Specialty Products, Part 1. AC-02-SP-1. October 2004. U.S. Department of Agriculture. http://www.nass.usda.gov/census/amindian.pdf
5. American Indians on Reservations: A Databook of Socioeconomic Change between the 1990 and 2000 Census. Jonathan B. Taylor and Joseph P. Kalt. January 2005. The Harvard Project on American Indian Economic Development.  http://www.ksg.harvard.edu/hpaied/pubs/pub_151.htm
6. Background Report on the Use and Impact of Food Assistance Programs on Indian Reservations. K. Finegold, N. Pindus, L. Wherry, S. Nelson, T. Triplett, R. Capps. January 2005. The Urban Institute.
7. Characteristics of Food Stamp Households: Fiscal Year 2004. Anni Poikolainen. September 2005. Mathematica Policy Research, Inc.
8. Family Violence and American Indians/Alaska Natives: A Report to the Indian Health Service Office of Women's Health. Principal Investigator: Laura A. Williams.  http://www.ihs.gov/PublicInfo/PublicAffairs/PressReleases/Press_Release_2002/Compendium_Part_I_and_II.pdf
9. HIV/AIDS Surveillance Report, 2004. Centers for Disease Control and Prevention. Vol. 16. Atlanta: US Department of Health and Human Services, Centers for Disease Control and Prevention; 2005. http://www.cdc.gov/hiv/stats/hasrlink.htm.
10. Indian Health Service Population Estimates and Projections. http://www.ihs.gov/NonMedicalPrograms/IHS_Stats/Statistical_Databases.asp
11. Ka huaka'i: 2005 Native Hawaiian Educational Assessment. S.K. Kana'iaupuni, N. Malone, and K. Ishibashi. Honolulu, HI: Kamehameha Schools, Pauahi Publications.
12. Longitudinal Study of the Indian Vocational Rehabilitation Services Program. May 2003. Final Report was submitted to Rehabilitation Services Administration, U.S. Department of Education, in partial fulfillment of requirements under ED Contract No. HR92022001. http://www.ilr.cornell.edu/ped/lsvrsp/PublishedResearchFiles/RTI_1stFINAL_Report.pdf
13. Office of Indian Education Programs Annual School Report Card  http://www.oiep.bia.edu/Report%20Cards/Annual%20Report%20Card%2004-05.htm
14. Racial and Ethnic Disparities in the Experiences of Health Care Consumers. Karen Onstad. A research brief published in November 2005 by the National Consumer Assessment of Health Care Providers and Systems (CAHPS) Benchmarking Database, under AHRQ Contract Number 290-0I-0003.
15. Regional Differences in Indian Health. Rockville, MD: Indian Health Service, 1998-99. http://www.ihs.gov/PublicInfo/Publications/trends98/region98.asp
16. Sexually Transmitted Disease Surveillance, 2004. Centers for Disease Control and Prevention. Atlanta, GA: U.S. Department of Health and Human Services, September 2005.
17. State Tobacco Activities Tracking and Evaluation (STATE) System. Centers for Disease Control and Prevention. Available at: http://www.cdc.gov/tobacco/statesystem.
18. Status and Trends in the Education of American Indians and Alaska Natives. C. Freeman and M. Fox. (2005). U.S. Department of Education, National Center for Education Statistics. Washington, DC: U.S. Government Printing Office, NCES 2005-108.
19. Strong Heart Study Data Book: A Report to American Indian Communities. November 2001. National Institutes of Health, National Heart, Lungs and Blood Institute, Division of Epidemiology and Clinical Applications. NIH Publication No. 01-3285. http:www.nhlbi.nih.gov/resources/docs/shs_db.htm
20. Summary of Notifiable Diseases - United States, 2004. Centers for Disease Control and Prevention. Published June 16, 2006, for MMWR 2004: 53 (No. 53). http://www.cdc.gov/mmwr/summary.html
21. Tobacco Use Among U.S. Racial/Ethnic Minority Groups-African Americans, American Indians and Alaska Natives, Asian Americans and Pacific Islanders, and Hispanics: A Report of the Surgeon General. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, Office on Smoking and Health. 1998. http://www.cdc.gov/TOBACCO/sgr/sgr_1998/index.htm
22. Trends in Indian Health, 2000-2001. Rockville, MD: Indian Health Service, 2000. http://www.ihs.gov/NonMedicalPrograms/IHS_Stats/Trends00.asp

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Endnotes

1. This paper will be available online in the future.
2. Reports from this effort are available at http://aspe.hhs.gov/datacncl/racerpt/ and http://aspe.hhs.gov/hsp/minority-db00/task2/index.htm.
3. U.S. Census Bureau, "The American Indian and Alaska Native Population: 2000." Census 2000 Brief, February 2002, page 2.
4. Panapassa, S.V. "The Health of U.S. Pacific Islander Populations: Emerging Directions." Presentation, May 2005.
5. Ibid.
6. One data source was not originally considered for inclusion, but was added to the catalog after an agency sent in a full profile.
7. Employees of federal agencies and departments may have access to some restricted use data sources that are not available to non-federal employees. These restricted-use data sources may have more identifying information than non-restricted use versions of the same data source. In some cases, they may allow identification of race of the respondent or participant where the public-use files do not (e.g., the National Immunization Survey).
8. http://www.whitehouse.gov/omb/fedreg/1997standards/

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