Implementing qualitative data management plans to ensure ethical standards in multi-partner centers

Lisa J Hardy, Amy Hughes, Elizabeth Hulen, Anna L. Schwartz

Research output: Contribution to journalArticle

3 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)191-198
Number of pages8
JournalJournal of Empirical Research on Human Research Ethics
Volume11
Issue number2
DOIs
StatePublished - 2016

Keywords

  • And burdens of research/beneficence and non-maleficence
  • Behavioral social science
  • Benefits
  • CBPR
  • Data sharing: informed consent
  • Indigenous/aboriginal/native populations
  • Public health research
  • Qualitative methods
  • Research ethics
  • Risks

ASJC Scopus subject areas

  • Education
  • Communication
  • Social Psychology
  • Law

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