TY - JOUR
T1 - Evaluating community engagement in global health research
T2 - The need for metrics Ethics in Biomedical Research
AU - Ethics Working Group of the HIV Prevention Trials Network
AU - MacQueen, Kathleen M.
AU - Bhan, Anant
AU - Frohlich, Janet
AU - Holzer, Jessica
AU - Sugarman, Jeremy
N1 - Funding Information:
National and international bodies now recognize the importance of community engagement in research. For example, the Wellcome Trust [4] and the Bill and Melinda Gates Foundation [5, 6] have provided funding to examine the ethical aspects of community engagement in international research. The US National Institutes of Health (NIH) has supported community-engaged research through its Clinical and Translational Science Award (CTSA) program and the NIH Division of AIDS (DAIDS) provides core funding to support community engagement via its research networks [7]. Further, major international research efforts such as H3Africa have embedded community engagement efforts [8]. A review of international ethics guidance documents published in 2004 identified community engagement to be a central guiding principle [9]. Interestingly, a review published by the same group four years earlier, which did not have
Funding Information:
Research reported in this publication was supported by the National Institute of Allergy and Infectious Diseases of the National Institutes of Health under Award Number UM1AI068619. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Publisher Copyright:
© 2015 MacQueen et al.
PY - 2015/7/1
Y1 - 2015/7/1
N2 - 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.
AB - 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.
KW - Community engagement
KW - Evaluation
KW - Global health
KW - Metrics
KW - Participatory research
KW - Research ethics
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U2 - 10.1186/s12910-015-0033-9
DO - 10.1186/s12910-015-0033-9
M3 - Review article
C2 - 26126899
AN - SCOPUS:84933527762
SN - 1472-6939
VL - 16
JO - BMC Medical Ethics
JF - BMC Medical Ethics
IS - 1
M1 - 44
ER -