title: Implementing Qualitative Data Management Plans to Ensure Ethical Standards in Multi-Partner Centers.
abstract: Thorough data management is crucial for the protection of people who participate in research and the ability for researchers to share results with the public. The impact of inadequate adherence to data management is particularly evident in small field sites and among vulnerable populations partoicipating in Community-Based Participatory Research (CBPR). CBPR presents exciting opportunities for multimedia and multi-sectoral dissemination of research results and policy change, especially concerning the impact of research on health equity for underrepresented populations. In this article, we discuss how we defined data boundaries and protections to adhere to ethical standards while also prioritizing data dissemination while using CBPR with American Indians in Arizona. Although complex partnerships can introduce additional risks to data oversight, data management practices can also increase opportunities for wide-reaching dissemination. We hope to contribute to the literature on data sharing in multi-partnership projects to bolster the impact of dissemination while also protecting participants and populations who chose to collaborate in research and policy practices.
authors.affiliation: Northern Arizona University, Flagstaff, USA Center for American Indian Reslience, AZ, USA lisa.hardy@nau.edu.
authors.forename: Lisa J
authors.initials: LJ
authors.lastname: Hardy
authors.affiliation: Northern Arizona University, Flagstaff, USA Center for American Indian Reslience, AZ, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Hughes
authors.affiliation: Center for American Indian Reslience, AZ, USA Center to Improve Veteran Involvement in Care, Health Services Research & Development, VA Portland Health Care System, USA.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Hulen
authors.affiliation: Northern Arizona University, Flagstaff, USA Center for American Indian Reslience, AZ, USA.
authors.forename: Anna L
authors.initials: AL
authors.lastname: Schwartz
mesh_terms: D001130:Arizona; D026688:Bioethical Issues; D055812:Community-Based Participatory Research / Q000941:ethics*; D003159:Community-Institutional Relations; D003219:Confidentiality; D003299:Cooperative Behavior; D003625:Data Collection / Q000941:ethics*; D006801:Humans; D007198:Indians, North American; D033181:Information Dissemination / Q000941:ethics*; D018907:Privacy; D012108:Research Personnel; D012111:Residence Characteristics; D035862:Vulnerable Populations
keywords: CBPR; Indigenous/Aboriginal/Native populations; behavioral social science; benefits; burdens of research/beneficence and non-maleficence; data sharing: informed consent; public health research; qualitative methods; research ethics; risks