Integrating Clinical Research into Epidemic Response The Ebola Experience (2017) / Chapter Skim
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6 Engaging Communities in Research and Response
6 Engaging Communities in Research and Response
Pages 199-222
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Conducting clinical research in the midst of a public health emergency like the Ebola epidemic in 2014–2015 involved most, if not all, of these issues and concerns. This is the fundamental reason why engaging affected communities in all facets of epidemic response is critical to ensuring that the response to the emergency is successful -- for example, that community members not only receive and understand public health messages, but that they seek out and trust clinical care, and become engaged to help shape the epidemic response and actively contribute to the efforts to change behaviors in order to protect people from exposure and facilitate getting those infected into care, as well as to become active participants in research.
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. To truly engage communities, they should also be invited and encouraged to be involved in planning and strategy committees for outbreak response and participate in monitoring and evaluation of the outbreak response and clinical trials.
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• Build capabilities in the community to participate in clinical trials research, and more broadly to better prevent, identify, and respond to epidemics.
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ENGAGING COMMUNITIES IN RESPONSE Empirical studies from cholera, shigellosis, dengue, and other outbreaks demonstrate the centrality that communities play in outbreak response and control (Kickbusch and Reddy, 2015)
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Despite prior knowledge of the effectiveness of community engagement in outbreak response, national authorities and international responders were slow to involve communities in the planning of public health interventions and in developing and implementing communication and social mobilization strategies during the Ebola outbreak (Laverack and Manoncourt, 2015; Marais et al., 2016) The initial response strategy was reported to be "top-down and driven by epidemiological data and the perceived need to treat Ebola patients" (Laverack and Manoncourt, 2015, p.
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It seems likely that if such initiatives to engage and share information were commenced earlier, and community participation in planning and implementing response and research programs were prioritized, it might have greatly affected the communities' receptivity to clinical trials. The fear and mistrust generated by poor initial community engagement in response activities had a direct impact on the real and perceived feasibility of conducting clinical trials during the epidemic.
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ENGAGING COMMUNITIES IN RESEARCH During the Ebola outbreak some community members believed they were being used as "guinea pigs" for foreign researchers. "A local radio reporter asked whether signing a consent form was tantamount to a ‘death warrant' for volunteers.
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The below section describes the engagement activities of several of the teams and the lessons they learned in the process. Community Input on Research Research teams seeking to investigate Ebola therapeutics or vaccines initially sought approval from the appropriate regulatory authorities and advisory bodies, but in some cases did not obtain local community opinions or input in the research planning phase.
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. Subsequently, the PREVAIL team held a series of meetings initiated by the Liberian vice president, where concerns were expressed about issues such as informed consent, inadequate testing of the vaccines in humans, the possibility of giving false hope to an at-risk population, and the potential that participants were being exploited or coerced (via compensation)
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, social anthropologists provided advice to the trial team on appropriate communication channels and methods to approach communities. The team employed community facilitators, who spoke the local language, to explain the purpose of the trial and answer questions regarding concerns about potential harm from the vaccine.2 2 Testimony of Ana Maria Henao Restrepo, Medical Officer, Department of Immunization Vaccines and Biologicals, WHO.
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It is clear from the experiences of the researchers involved in clinical trials during the Ebola outbreak that community engagement requires extensive dialogue with key community representatives on complex issues such as study design, the potential benefits and risks of investigational vaccines or therapeutics, and fair distribution of benefits to participants and communities (see Table 6-1)
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Public Workshop of the Committee on Clinical Trials During the 2014–2015 Ebola Outbreak, Washington DC, June 13–15, 2016.
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Conclusion 6-3 Community engagement and social mobilization efforts are essential for public understanding and acceptance of research, and they need to be linked to other aspects of the epidemic response. International response and research teams would be strengthened by the inclusion of social scientists and others with expertise in commu nity engagement.
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During the Ebola epidemic, it was unclear to the extent in which community consent was obtained, though as detailed above, trial teams did hold group sessions and meetings to address community concerns prior to enrolling participants. For example, the PREVAIL trial team held group information sessions in which they discussed the plans for the study.
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Public Workshop of the Committee on Clinical Trials During the 2014–2015 Ebola Outbreak, London, UK, March 22–24, 2016. 6 Testimony of Luciana Borio, acting chief scientist, U.S.
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. THE ROLE OF COMMUNICATION Truthful, clear communication during an outbreak or epidemic is critical to successfully conveying public health messages, implementing infection control measures, and engaging communities in the entire process of response.
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For example, the Liberian Civil Society Organizations' Ebola Response Task Force expressed some concerns about the rollout of the PREVAIL vaccine trial in February 2015. The task force stated that the PREVAIL trial team, in spite of its efforts to engage the community in discussion, did not do an adequate job educating the public about
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They also began training local journalists and media hosts to provide accurate information. The CDC reported that "recognizing the need to simplify and coordinate messaging, CDC partners worked with the Sierra Leone National Ebola Response Centre to launch the Ebola Big Idea of the Week campaign.
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SUMMARY Community engagement is a lengthy process, and outbreak response and clinical trial teams not only need to reach the community and provide information during an epidemic, but also must deal with preexisting knowledge and beliefs, whatever their origins or basis. A research team may bring new information and insights, but it never starts from zero when entering a new community during an epidemic.
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While there are many ongoing health concerns to address and there is a need to build better capacity and expertise, it is also an excellent time to continue to engage in dialogue about Ebola and, in particular, to share what was learned in each country from the clinical research that was done and how this information could be productively used in a future outbreak. Partnerships established during the outbreak can be leveraged to engage in this work and to solicit support for the dissemination of Ebola information and to develop a network between the newly established and strengthened public health units and the media and communication channels used by and in the communities.
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2011. Repeated assessments of informed consent comprehension among HIV-infected participants of a three-year clinical trial in Botswana.
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Contemporary Clinical Trials Communications 4:68–73. Ebola Response Anthropology Platform.
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2010. Engaging diverse communities participating in clinical trials: Case examples from across Africa.
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2016. Fears and misperceptions of the Ebola response system during the 2014–2015 outbreak in Sierra Leone.
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