Recommendation for data sharing agreements and publication and research guidelines when conducting community-engaged research with American Indian and Alaska Native communities

Community-Engaged Research (CEnR) plays a significant role in conducting research with American Indian and Alaska Native (AIAN) communities.  AIAN public health research can have clear benefits toward advancing knowledge and clinical practice guidelines for these underserved communities. The goal of CEnR is to engage members in every phase of the research process to ensure that research is responsive to both ethical requirements and community health concerns. CEnR requires assessing community-level risk that often results in the development of specialized data sharing agreement, accompanied by publication and research guidelines.  

In this study, we identify key components for the development of data sharing agreements as well as publication and research guidelines. In addition, we describe and provide recommendations around responding to community-level research risk. Investigators abstracted common elements from data sharing agreements and publication and research guidelines from 10 CEnR AIAN studies and identified shared concerns around community-level risk across these studies.

Developing data sharing agreements with AIAN communities requires that the following questions be adequately addressed: Who owns the data? How is the data used? Where is the data housed? Who has access to the data? How the data may be accessed beyond the aims of the grant? Publication and research guidelines include: the establishment of a collaboratively developed community-academic review committee; type of acceptable dissemination activities (i.e., presentation, papers); template development for submitting data-use request; review of research timeline; and a conflict resolution plan. Assessing community risk includes a collaborative discussion of adequate tribal consent, community board review of research protocols, tribal privacy, respect for cultural knowledge and property, and identification of elders as a special population. Handouts, detail examples, and discussion will be provided aimed at examining the practical implications and procedures involved in CEnR. Identifying core research agreements components will allow partnerships to create a standard community-academic agreement, obtain preapproval, thus requiring slight adjustments for each new project. Establishing preapproved guidelines and data sharing templates will help expedite CEnR research review and approval processes.