American Indian and Alaska Native communities face unique challenges when it comes to public health data

Researchers at Child Trends recently contributed to a report produced by the Health Impact Project, a collaboration of the Robert Wood Johnson Foundation and The Pew Charitable Trusts, that provides a comprehensive and up-to-date analysis of the ways in which children are exposed to lead. The report also offers evidence-based recommendations to federal, state, and local policymakers on how to prevent and respond to lead exposure among children.

While the study team was able to access data on the extent of various sources of lead exposure—and on the effectiveness of specific interventions to address such hazards—American Indian and Alaska Native (AI/AN) communities were generally not represented in those datasets. In fact, high-quality data may be lacking on common exposures to lead in childhood and effective interventions for AI/AN communities, making it difficult to draw conclusions about the extent of the problem or how to effectively intervene.

AI/AN communities often face restricted access to (or the absence of) relevant data, or limited capacity to analyze data. These unique challenges can affect research, policy, and program priorities related to assessing and addressing a broad range of public health issues, including childhood exposure to lead. The following issues related to accessing public health data for AI/AN communities emerged from discussions with several AI/AN organizations, including the National Tribal Toxics Council, the United South and Eastern Tribes, Inc. (USET) Tribal Epidemiology Center, and the National Congress of American Indians. We thank these partners for their invaluable contributions to this blog.

1. Many tribal nations have limited access to critical public health data, including data on lead, and it can be challenging to make meaningful comparisons with existing data. AI/AN populations are often not reported in public health statistics because small sample sizes (only 1.72 percent of the U.S. population) make it difficult to calculate accurate estimates. This is further complicated when data from AI/AN individuals who represent many diverse tribes are combined: as of January 29, 2018 there are 573 sovereign tribal nations within the United States. Direct comparisons with other racial and ethnic groups can be difficult and may mask important differences between tribes related to treaty provisions, physical environment, and other factors.Some experts have suggested making comparisons across tribal nations, rather than attempting to compare AI/AN data to those of other racial or ethnic groups. However, there are limited formal mechanisms (such as regional Tribal Epidemiology Centers) for sharing or aggregating information across tribes, leaving researchers and tribal governments to negotiate individual agreements when data is available.

2. The capacity to use data varies across tribal nations, influencing the quality and utility of public health data for AI/AN populations. Data governance capacity—a tribal nation’s ability to collect and manage data about the nation and its citizens, lands, resources, programs, and communities, and to control who has access to that data—varies significantly from one nation to another. The federal government has an obligation to protect tribal self-governance (which may extend to building tribes’ data governance capacity). However, while some tribal governments have developed the capacity to govern their own data, others continue to rely on federal entities to collect and manage public health data. Such challenges limit tribes’ access to accurate, relevant, and timely data for research, policy making, and programming to address public health concerns such as childhood exposure to lead.

3. Tribal nations may be reluctant to collect or share public health data due to mistrust. There are several documented cases of unethical use of data that were collected in AI/AN communities, but claimed by an entity other than the tribe. This has led many tribal nations to be wary of participating in data collection—especially when that data will be managed by nontribal entities such as academic researchers or federal, state, or local government agencies. Even when tribal nations have collaborated with federal and state government agencies to collect public health data, those agencies have not always shared the data with the respective tribal governments. If data are shared, they may be provided in formats that tribal nations with limited data capacity find difficult to analyze or use.

These issues reinforce the need for researchers and policymakers to adopt a cooperative approach with tribal communities around data.

Tribal nations have rights to data about their lands and citizens. Researchers and policymakers should partner with tribes to conduct studies and collect public health data that benefit AI/AN communities. Policymakers should consider the role of the Indian Health Service and the Environmental Protection Agency in ensuring that data on blood lead levels for AI/AN children are routinely collected and shared with tribes. Researchers with an interest in understanding and addressing childhood exposure to lead or other public health issues in AI/AN communities must take time to educate themselves about best practices when partnering with tribal nations. They should also make every effort to become familiar with the research and data oversight requirements for each partnering tribal nation. Some tribal nations may have a well-established research review committee or institutional review board, whereas others may have less structured processes.

The National Congress of American Indians, in partnership with other national AI/AN organizations, developed the Native Children’s Policy Agenda, which includes objectives aimed at addressing lead exposure in AI/AN communities. In particular, the agenda addresses common exposures such as lead-based paint and old lead water pipes. For communities located on tribal reservations, the agenda also calls for adequate environmental protections from toxic waste dumps and storage facilities on or near reservations, discourages illegal dumping of toxic waste on tribal lands, and supports increased environmental monitoring to assist tribes in identifying and addressing environmental hazards.

For additional resources related to childhood lead exposure in AI/AN communities, contact the National Tribal Toxics Council. The council is preparing a review of available research and a toolkit that will contain practical suggestions and best practices for addressing childhood exposure to lead in AI/AN communities.