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.
American Anthropological Association. (2012, November1). Code of ethics of the American Anthropological Association. Retrieved from http://ethics.aaanet.org/category/statement
3.
CliggettL. (2013). Qualitative data archiving in the digital age: Strategies for data preservation and sharing. The Qualitative Report, 18(24), 1-11.
DongX.ChangE. S.SimonM.WongE. (2011). Sustaining community-university partnerships: Lessons learned from a participatory research project with elderly Chinese. Gateways: International Journal of Community Research and Engagement, 4, 31-47.
6.
Drabiak-SyedK. (2010). Lessons from Havasupai Tribe v. Arizona State University Board of Regents: Recognizing group, cultural, and dignity harms as legitimate risks warranting integration into research practice. Journal of Health & Biomedical Law, 6, 175-225.
7.
FlickerS.TraversR.GutaA.McDonaldS.MeagherA. (2007). Ethical dilemmas in community-based participatory research: Recommendations for institutional review boards. Journal of Urban Health, 84, 478-493.
8.
GarrisonN. A.ChoM. K. (2013). Awareness and acceptable practices: IRB and researcher reflections on the Havasupai lawsuit. AJOB Primary Research, 4(4), 55-63.
HardyL. J.HughesA.HulenE.FigueroaA.EvansC.BegayR. C. (2015). Hiring the experts: Best practices for community-engaged research. Qualitative Research. Advance online publication. doi:10.1177/1468794115579474
11.
IsraelB. A.CoombeC. M.CheezumR. R.SchulzA. J.McGranaghanR. J.LichtensteinR.BurrisA. (2010). Community-based participatory research: A capacity-building approach for policy advocacy aimed at eliminating health disparities. American Journal of Public Health, 100, 2094-2102.
12.
IsraelB. A.SchulzA. J.ParkerE. A.BeckerA. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173-202.
13.
LunshofJ. E.ChadwickR. (2011). Editorial: Genetic and genomic research—Changing patterns of accountability. Accountability in Research, 18, 121-131.
14.
MelloM.WolfL. (2010). The Havasupai Indian tribe case—Lessons for research involving stored biologic samples. New England Journal of Medicine, 363, 204-207.
15.
MikesellL.BromleyE.KhodyakovD. (2013). Ethical community-engaged research: A literature review. American Journal of Public Health, 103(12), e7-e14. doi:10.2105/AJPH.2013.301605
16.
MinklerM. (2010). Linking science and policy through Community-Based Participatory Research to study and address health disparities. American Journal of Public Health, 100(31), S82-S87.
17.
MinklerM.WallersteinN. (2008). Community-Based Participatory Research for health: From process to outcomes. San Francisco, CA: John Wiley.
18.
NeedleR. H.TrotterR. T.IISingerM.BatesC.PageJ. B.MetzgerD.MarcelinL. H. (2003). Rapid assessment of the HIV/AIDS crisis in racial and ethnic minority communities: An approach for timely community interventions. American Journal of Public Health, 93, 970-979.
19.
PachecoC. M.DaleyS. M.BrownT.FilippiM.GreinerK. A.DaleyC. M. (2013). Moving forward: Breaking the cycle of mistrust between American Indians and researchers. American Journal of Public Health, 103, 2152-2159.
20.
SantosL. (2008). Genetic research in native communities. Progress in Community Health Partnerships: Research, Education, and Action, 2, 321-327.
21.
SharpR. R.FosterM. W. (2002). Community involvement in the ethical review of genetic research: Lessons from American Indian and Alaska Native populations. Environmental Health Perspectives, 110(Suppl. 2), 145-148.
TrotterR. T.NeedleR. H.GoosbyE.BatesC.SingerM. (2001). A methodological model for rapid assessment, response, and evaluation: The RARE program in public health. Field Methods, 13, 137-159.
24.
WallersteinN. B.DuranB. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7, 312-323.
25.
WallersteinN. B.DuranB. (2010). Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(S1), S40-S46.
26.
WatkinsJ. (2001). Indigenous archaeology: American Indian values and scientific practice. Walnut Creek, CA: AltaMira Press.
