Stakeholders’ engagement with Ebola therapy research in resource limited settings

Abstract

BackgroundThe current Ebola Virus Disease (EVD) outbreak in West Africa is the largest in history. As of February 18th 2015, 23,258 cases of EVD have been cumulatively reported from Nigeria, Senegal, Guinea, Liberia, Mali, Sierra Leone, Spain, the United Kingdom and the United States of America resulting in more than 9,000 deaths. It is therefore exigent to develop prevention and treatment therapies for EVD.DiscussionSeveral new EVD treatments are in clinical development at this time. Based on lessons learned, four critical processes need to be implemented before clinical trials begin. First, all global EVD research need to be coordinated to promote data sharing and synergistic overlap, while reducing unnecessary duplication of efforts. The World Health Organization is well-placed to undertake such an endeavor. Second, governments of affected nations where trials are being proposed need to lead discussions regarding immediate access to any proven medications for epidemics. Also, governments need to leverage international resources to support and expand existing national expertise to jointly conduct high-caliber clinical research; and resources must be used to enhance local technical skills and expand existing personnel. Third, ethics committees must review protocols, monitor the research process, and work closely with research scientists to insure the ethical integrity of research throughout the trials. Fourth, community advisory boards (CAB) need to be formed, linked with existing community leadership structures and organized in conjunction with trial implementation. These community structures should work together with ethics committees to facilitate the study design, informed consent process, and study implementation.SummaryWe must facilitate communication and mutual understanding between trial communities and research teams, and promote positive collaborations between all stakeholders engaged in EVD research. The community engagement process for EVD research is crucial to address myths and misconceptions, and to promote study volunteers’ understanding of the research details. The collaboration between all stakeholders is crucial for continued long term partnership to address EVD outbreak and none of the stakeholders should be left behind in ongoing efforts to develop EVD therapies.

Addressing challenges for clinical research responses to emerging epidemics and pandemics: a scoping review

“…International research collaborations should be tied to capacity building and be genuinely collaborative [22], with local stakeholders engaged from inception [1, 3, 13, 16-19, 22, 26, 29, 31, 32, 36, 38, 40, 44, 50, 51]. Support from national governments and local communities was a key enabler [16,17,23,32,36]. Continuous dialogue, led by governments of affected nations [16, Table 1 The search strategy for Scopus and Epistemonikos (zika* OR zikv* OR ebola* OR "middle east respiratory syndrome*" OR "MERS-CoV" OR h7n9 OR h1n1 OR h5n1 OR nipah OR cholera* OR "yellow fever" OR influenza OR ((outbreak* OR pandemic* OR epidemic*) AND ("infectious disease*" OR "communicable disease*"))) AND (research OR "clinical trial*" OR "vaccin* trial*") AND (politic* OR economic* OR administrat* OR regulat* OR logistic* OR ethic* OR social* OR cultur* OR behavior* OR behaviour*) AND (barrier* OR bottleneck* OR delay* OR "time delay*" OR expedite* OR solution* OR facilitate*).…”

Global Critical Care: Moving Forward in Resource-Limited Settings

“…Unfortunately, currently prevailing models prioritize 'blockbuster products' that do not necessarily recognize a health rights framework or public health approach, and grossly fail to address population needs, especially for resource-limited settings, and are poorly suited for timely response to outbreak conditions [31]. Folayan et al describe four major processes required to conduct research in resource-limited settings during outbreak conditions, including local access to products developed as a result of the research, capacity transfer to local researchers, development of competent local ethics committees, and empowerment of community members to actively engage in research design and implementation [90]. Public health organizations should work with the academic community to guide research priorities by taking into account the public health impact.…”

Forming and implementing community advisory boards in low- and middle-income countries: a scoping review

“…Twenty-three publications highlighted knowledge gaps between researchers and members of communities and CABs [5, 13, 16, 17, 25, 26, 31–37, 40, 41, 44, 79–81, 84, 85, 87, 88]. It was noted that average members of the population in LMICs, including CAB members, were more likely to have lower levels of education compared to HICs [5, 35].…”