Evaluating community engagement in global health research: the need for metrics

被引:102
|
作者
MacQueen, Kathleen M. [1 ]
Bhan, Anant [2 ]
Frohlich, Janet [3 ]
Holzer, Jessica [4 ]
Sugarman, Jeremy [5 ]
机构
[1] FHI, Social & Behav Hlth Sci, Durham, NC 27514 USA
[2] Bioeth & Global Hlth, Bhopal, India
[3] Univ KwaZulu Natal, CAPRISA, Vulindlela Clin Res Site, Durban, South Africa
[4] Hofstra Univ, Hempstead, NY 11550 USA
[5] Johns Hopkins Univ, Berman Inst Bioeth, Baltimore, MD USA
来源
BMC MEDICAL ETHICS | 2015年 / 16卷
基金
美国国家卫生研究院;
关键词
Research ethics; Community engagement; Participatory research; Global health; Evaluation; Metrics; INFORMED-CONSENT; ADVISORY BOARDS; DEVELOPING-COUNTRIES; BIOMEDICAL-RESEARCH; CLINICAL-RESEARCH; GENOMIC RESEARCH; PERSPECTIVES; PARTICIPATION; CONSULTATION; CHALLENGES;
D O I
10.1186/s12910-015-0033-9
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
Background: Community engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate. Discussion: We describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which set the stage for similar work in other health related research. Next, we review the scholarly literature regarding community engagement, outlining the diverse ethical goals ascribed to it. We then discuss practical guidelines that have been issued regarding community engagement. There is a lack of consensus regarding the ethical goals and approaches for community engagement, and an associated lack of indicators and metrics for evaluating success in achieving stated goals. To address these gaps we outline a framework for developing indicators for evaluating the contribution of community engagement to ethical goals in health research. Summary: There is a critical need to enhance efforts in evaluating community engagement to ensure that the work on the ground reflects the intentions expressed in the guidelines, and to investigate the contribution of specific community engagement practices for making research responsive to community needs and concerns. Evaluation mechanisms should be built into community engagement practices to guide best practices in community engagement and their replication across diverse health research settings.
引用
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页数:9
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