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实施定性数据管理计划以确保多伙伴中心的道德标准。

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

作者信息

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

机构信息

Northern Arizona University, Flagstaff, USA Center for American Indian Reslience, AZ, USA

Northern Arizona University, Flagstaff, USA Center for American Indian Reslience, AZ, USA.

出版信息

J Empir Res Hum Res Ethics. 2016 Apr;11(2):191-8. doi: 10.1177/1556264616636233. Epub 2016 Apr 13.


DOI:10.1177/1556264616636233
PMID:27074911
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4917406/
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.

摘要

全面的数据管理对于保护参与研究的人员以及研究人员与公众分享研究结果的能力至关重要。在小型实地研究点以及参与社区参与式研究(CBPR)的弱势群体中,数据管理执行不力的影响尤为明显。CBPR为研究结果的多媒体和多部门传播以及政策变革提供了令人兴奋的机会,特别是在研究对代表性不足人群的健康公平影响方面。在本文中,我们讨论了在与亚利桑那州的美国印第安人开展CBPR时,我们如何界定数据边界和保护措施以遵守道德标准,同时还将数据传播作为优先事项。尽管复杂的伙伴关系可能给数据监督带来额外风险,但数据管理实践也可以增加广泛传播的机会。我们希望为多伙伴关系项目中的数据共享文献做出贡献,以增强传播的影响力,同时保护那些选择参与研究和政策实践的参与者和人群。

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引用本文的文献

[1]
A data management plan for the NESHIE observational study.

Front Genet. 2023-12-6

[2]
Strategies for culturally safe research with Native American communities: an integrative review.

Contemp Nurse. 2022-2

[3]
Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review.

Int J Environ Res Public Health. 2021-9-30

[4]
Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.

Front Genet. 2019-10-10

[5]
Examining Data Repository Guidelines for Qualitative Data Sharing.

J Empir Res Hum Res Ethics. 2018-2

本文引用的文献

[1]
Hiring the experts: best practices for community-engaged research.

Qual Res. 2016-10

[2]
Toolkit for Community-engaged Wellness Mapping.

CES4healthinfo. 2014

[3]
Moving forward: breaking the cycle of mistrust between American Indians and researchers.

Am J Public Health. 2013-10-17

[4]
Ethical community-engaged research: a literature review.

Am J Public Health. 2013-10-17

[5]
Awareness and Acceptable Practices: IRB and Researcher Reflections on the Havasupai Lawsuit.

AJOB Prim Res. 2013-10-1

[6]
Editorial: genetic and genomic research-changing patterns of accountability.

Account Res. 2011-5

[7]
Community-based participatory research: a capacity-building approach for policy advocacy aimed at eliminating health disparities.

Am J Public Health. 2010-9-23

[8]
The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

N Engl J Med. 2010-7-15

[9]
Genetic research in native communities.

Prog Community Health Partnersh. 2008

[10]
Linking science and policy through community-based participatory research to study and address health disparities.

Am J Public Health. 2010-2-10

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