Partnering in research: a national research trial exemplifying effective collaboration with American Indian Nations and the Indian Health Service

Abstract

Despite the fact that numerous major public health problems have plagued American Indian communities for generations, American Indian participation in health research traditionally has been sporadic in many parts of the United States. In 2002, the University of Oklahoma Health Sciences Center (Oklahoma City, Oklahoma) and 5 Oklahoma American Indian research review boards (Oklahoma City Area Indian Health Service, Absentee Shawnee Tribe, Cherokee Nation, Chickasaw Nation, and Choctaw Nation) agreed to participate collectively in a national research trial, the Treatment Options for Type 2 Diabetes in Adolescence and Youth (TODAY) Study. During that process, numerous lessons were learned and processes developed that strengthened the partnerships and facilitated the research. Formal Memoranda of Agreement addressed issues related to community collaboration, venue, tribal authority, preferential hiring of American Indians, and indemnification. The agreements aided in uniting sovereign nations, the Indian Health Service, academics, and public health officials to conduct responsible and ethical research. For more than 10 years, this unique partnership has functioned effectively in recruiting and retaining American Indian participants, respecting cultural differences, and maintaining tribal autonomy through prereview of all study publications and local institutional review board review of all processes. The lessons learned may be of value to investigators conducting future research with American Indian communities.

Keywords: American Indian health; American Indians; collaborative research; community-based research.

© The Author 2014. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Figures

Figure 1.

Site partners in the Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY) Study, Oklahoma City, Oklahoma (2004–present): the Absentee Shawnee Tribe, the Cherokee Nation, the Choctaw Nation of Oklahoma, the Chickasaw Nation, the Oklahoma City Area Indian Health Service, the University of Oklahoma, the University of Oklahoma College of Medicine, and the TODAY Study. Reproduced with permission from the respective tribes, nations, and organizations.

Figure 2.

A suggested timeline for building a research partnership with American Indian tribes and nations. The length of time needed to complete each step may vary, timelines for different processes may overlap, and participants may need to return to various steps throughout the partnership process. IRB, institutional review board.