Participatory Case Studies of Community-Led Research Review Processes

Abstract

The National Collaborative Study Team is a community-academic partnership that worked together to seek funding and conduct a cross-case analysis of five community-based research ethics review processes. These community-based research ethics review processes assess and address individual and community-level risks, benefits, and cultural implications of proposed research. In Year 1, the team conducted individual case studies of each of the five community-based research ethics review processes, which included conducting interviews and focus groups, analyzing guiding documents, and observing review meetings for two sites. In Year 2, information was generated primarily from an intensive team discussion formatted similarly to a focus group. The team was committed to engaging in a participatory research process that ensured each member of the team was actively involved in determining the research design, implementation, dissemination, and next steps. The team convened twice in-person, at the start of both the first and second year of the grant. The team also met monthly by phone and corresponded by email. Additional phone meetings occurred on an as-needed basis. During the first in-person meeting, the team agreed upon group norms and processes. Examples included establishing policies pertaining to data ownership and authorship order.

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