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.

Review of Community-Engaged Research in Pediatric Diabetes

“…We identified one study that was conducted among youth with diagnosed T2D. This study used CER to concentrate on American Indian youth participation in the NIH-funded Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY) study, which aimed to determine optimal treatment in youth who were newly diagnosed [24]. Academic researchers partnered with the Oklahoma City Area Indian Health Services and several Oklahoma tribes and nations.…”

Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review

“…Nine of the articles in this analysis included descriptions of a system or procedure for regulating research and a tribal IRB or tribal community-level review was not available (Table 2). Tribal IRBs or a tribal community-level review of research can provide an expansion on the Common Rule that includes requirements for review and approval of all publications and presentations resulting from the research (Chadwick et al 2014; Angal et al 2016) A tribal community-level review in health research is an acknowledgement of an AIAN groups’ sovereign right to oversee research to protect tribal citizens from individual and/or group harm, (Hull and Wilson 2017) and provides a way for AIAN communities to stay informed of research results and dissemination activities (Angal et al 2016). It should be noted that five of the six articles including an urban sample did not provide a description of a system or procedure for regulating research and a tribal IRB or tribal community-level research review was either not available or not reported as being sought (Orians et al 2004; Legaspi and Orr 2007; Fleischhacker et al 2011; Fleischhacker et al 2012).…”

“…Tribal IRBs, other forms of research review committees, and written policies to oversee research activities are approaches that some tribal communities are adopting to exert sovereign authority over research (Chadwick et al 2014). These AIAN-governed bodies may be charged not only with protecting individual research participants but also the tribal community as a whole, ensuring that potential benefits are not negated by inappropriately conducted research (Morton et al 2013).…”

In search of Pan-American indigenous health and harmony

“…Active and honest relationships that included Native American leadership in research provided successful outcomes to a collaboration between academia and Native American communities. This collaboration also resulted in a position specific for assistance of research facilitation within the Native American community [13]. Literature reviews and meta-analyses can provide deep insight and direct recommendations that nations and communities can move forward on, without hesitation.…”