Literature DB >> 27074911

Implementing Qualitative Data Management Plans to Ensure Ethical Standards in Multi-Partner Centers.

Lisa J Hardy1, Amy Hughes2, Elizabeth Hulen3, Anna L Schwartz2.   

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.
© The Author(s) 2016.

Entities:  

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

Mesh:

Year:  2016        PMID: 27074911      PMCID: PMC4917406          DOI: 10.1177/1556264616636233

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  16 in total

1.  Rapid assessment of the HIV/AIDS crisis in racial and ethnic minority communities: an approach for timely community interventions.

Authors:  Richard H Needle; Robert T Trotter; Merrill Singer; Christopher Bates; J Bryan Page; David Metzger; Louis H Marcelin
Journal:  Am J Public Health       Date:  2003-06       Impact factor: 9.308

2.  The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

Authors:  Michelle M Mello; Leslie E Wolf
Journal:  N Engl J Med       Date:  2010-06-09       Impact factor: 91.245

3.  Community-based participatory research: a capacity-building approach for policy advocacy aimed at eliminating health disparities.

Authors:  Barbara A Israel; Chris M Coombe; Rebecca R Cheezum; Amy J Schulz; Robert J McGranaghan; Richard Lichtenstein; Angela G Reyes; Jaye Clement; Akosua Burris
Journal:  Am J Public Health       Date:  2010-09-23       Impact factor: 9.308

4.  Using community-based participatory research to address health disparities.

Authors:  Nina B Wallerstein; Bonnie Duran
Journal:  Health Promot Pract       Date:  2006-06-07

5.  Ethical dilemmas in community-based participatory research: recommendations for institutional review boards.

Authors:  Sarah Flicker; Robb Travers; Adrian Guta; Sean McDonald; Aileen Meagher
Journal:  J Urban Health       Date:  2007-07       Impact factor: 3.671

6.  Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity.

Authors:  Nina Wallerstein; Bonnie Duran
Journal:  Am J Public Health       Date:  2010-02-10       Impact factor: 9.308

7.  Linking science and policy through community-based participatory research to study and address health disparities.

Authors:  Meredith Minkler
Journal:  Am J Public Health       Date:  2010-02-10       Impact factor: 9.308

8.  Editorial: genetic and genomic research-changing patterns of accountability.

Authors:  Jeantine E Lunshof; Ruth Chadwick
Journal:  Account Res       Date:  2011-05       Impact factor: 2.622

9.  Genetic research in native communities.

Authors:  Lorrieann Santos
Journal:  Prog Community Health Partnersh       Date:  2008

10.  Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations.

Authors:  Richard R Sharp; Morris W Foster
Journal:  Environ Health Perspect       Date:  2002-04       Impact factor: 9.031

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  2 in total

1.  Examining Data Repository Guidelines for Qualitative Data Sharing.

Authors:  Alison L Antes; Heidi A Walsh; Michelle Strait; Cynthia R Hudson-Vitale; James M DuBois
Journal:  J Empir Res Hum Res Ethics       Date:  2017-12-10       Impact factor: 1.742

2.  Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.

Authors:  R Brian Woodbury; Julie A Beans; Vanessa Y Hiratsuka; Wylie Burke
Journal:  Front Genet       Date:  2019-10-10       Impact factor: 4.599

  2 in total

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