TITLE: Improved Partnerships between the Department of Health and Human Services, DHHS Agencies and Tribes in the Development and Implementation of National Studies, Research, and Evaluation to Raise the Level of Health for American Indian and Alaska Native Communities
WHEREAS, we, the members of the National Congress of American Indians of the United States, invoking the divine blessing of the Creator upon our efforts and purposes, in order to preserve for ourselves and our descendants the inherent sovereign rights of our Indian nations, rights secured under Indian treaties and agreements with the United States, and all other rights and benefits to which we are entitled under the laws and Constitution of the United States, to enlighten the public toward a better understanding of the Indian people, to preserve Indian cultural values, and otherwise promote the health, safety and welfare of the Indian people, do hereby establish and submit the following resolution; and
WHEREAS, the National Congress of American Indians (NCAI) was established in 1944 and is the oldest and largest national organization of American Indian and Alaska Native tribal governments; and
WHEREAS, the United Nations Declaration of the Rights of Indigenous Peoples states that Indian nations have the right, without discrimination, to improve their own health systems; to develop priorities and strategies; to be actively involved in developing health programs; to administer those programs through their own institutions; to use traditional practices and medicine; and to the highest attainable health and mental health status; and
WHEREAS, Congress declared that Indian nations have the primary responsibility for protecting and ensuring the well-being of its members and are providing resources to assist Indian tribes in meeting that responsibility; and
WHEREAS, Congress has declared on specific Department of Health and Human Services grant initiatives, that Indian tribal grantees must cooperate with national evaluations and studies; and
WHEREAS, the Department of Health and Human Services and its agencies have the authority to determine what is included in those national studies, with a requirement for achieving standards of cultural competence; and
WHEREAS, the vast majority of national evaluations for grant programs are developed without specific regard or consultation with the tribal grantees; and
WHEREAS, Indian tribes have suffered harm from research and evaluation conducted on their tribal people. Harm has included shame and embarrassment; misrepresenting information; pathologizing communities; taking information without consent; serious injury/illness, and even death. Included in these harmful studies are those federally sponsored and conducted by agencies of the United States; and
WHEREAS, research and evaluation policy can have unintended, negative and harmful consequences for American Indian and Alaska Native people, and it is the moral and legal obligation of Tribal leaders to ensure no harm is done; and
WHEREAS, researchers that do not adequately engage the Indian nations have made significant errors in use and interpretation of data about Indian nations, leading to community harm; and
WHEREAS, National evaluations implemented by the Department of Health and Human Services Agency utilize assessment methods and tools that have no validity and reliability for use with American Indian or Alaska Native populations; and
WHEREAS, National evaluations and studies in public health document illness and disease in the community, having few programs generating data that is useful for understanding strategies and practices to improve health conditions for American Indian/Alaska Native communities; and
WHEREAS, Indian nations, together representing the smallest population in the United States, experience the highest documented health disparities, carrying the heaviest disease burden than other ethnic groups in the United states on a wide range of physical and psychosocial illnesses, including diabetes, depression, post traumatic stress, and alcohol/substance abuse. Further, Tribal youth have had the highest documented suicide disparity for over 40 years; and
WHEREAS, American Indian and Alaska Natives are vulnerable populations in research and the ethical principle of Justice requires that vulnerable populations have the ability to benefit from the research; and
WHEREAS, Indian nations also carry the heaviest burden of research, using western standards, measures, and outcomes that do little to bring new knowledge or advancement for community growth; and
WHEREAS, there are effective tribal practices for addressing many of the illnesses that tribal people face that have been underfunded in research and/or exploited by research; and
WHEREAS, NCAI has already established that Indian nations, as sovereign governments, have their own legal authority to determine what research will be conducted on their people and the right of tribes to have informed consent regarding research projects on its members (Resolution SAC-06-019); and
WHEREAS, NCAI has already established that when data is available, small population sizes often result in unstable rates; and requesting sensitive data from small communities with a shared experience of historical trauma where data has been misused may be culturally inappropriate (Resolution MSP-15-043); and
WHEREAS, NCAI has already established how, in order to reduce health disparities and to promote wellness among American Indian and Alaska Native peoples and communities, there must be a fundamental shift in how research is designed and developed; highlighting the importance of culturally-based methodologies, research processes and meaningful measures of health (Resolution LNK-12-035); and
WHEREAS, NCAI has already called on appropriate American Indian/Alaska Native expertise in a wide range of public health research areas and the importance of data access and quality as an integral part of the Tribal Behavioral Health Agenda (Resolution MSP-15-043); and
WHEREAS, there are successful federal models for developing and implementing meaningful research with tribes (i.e., NARCH, SAMHSA Circle of Care, Children’s Bureau Roadmap to Evaluation, etc.).
NOW THEREFORE BE IT RESOLVED, that the National Congress of American Indians (NCAI) requests the Department of Health and Human Services and its agencies acknowledge the shortcomings of standard research methods and use of research tools on Indian nations and further support and protect the rights of these nations to determine methods and tools that are appropriate for use with its own people; and
BE IT FURTHER RESOLVED, that the Department and Health and Human Services and its agencies engage in meaningful consultation with Indian nations in the development and implementation of national evaluation outcomes, methods, tools, data analysis and interpretation; and
BE IT FURTHER RESOLVED, that all federally-sponsored research and evaluation activities, required or otherwise, undergo tribal community review and obtain written permission from the Indian nation prior to implementation on tribal lands; and
BE IT FURTHER RESOLVED, that NCAI calls on the Secretary of the Department of Health and Human Services to investigate the outcomes and impacts of federally-sponsored grant research programs on American Indian and Alaska Native peoples and their Indian nations; and
BE IT FURTHER RESOLVED, that the Department of Health and Human Services adopt an agency-wide policy for engaging Indian nation grantees in the development and implementation of evaluation programs and studies; and
BE IT FINALLY RESOLVED, that this resolution shall be the policy of NCAI until it is withdrawn or modified by subsequent resolution.