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Published in: BMC Public Health 1/2016

Open Access 01-12-2016 | Research article

Power, fairness and trust: understanding and engaging with vaccine trial participants and communities in the setting up the EBOVAC-Salone vaccine trial in Sierra Leone

Authors: Luisa Enria, Shelley Lees, Elizabeth Smout, Thomas Mooney, Angus F. Tengbeh, Bailah Leigh, Brian Greenwood, Deborah Watson-Jones, Heidi Larson

Published in: BMC Public Health | Issue 1/2016

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Abstract

Background

This paper discusses the establishment of a clinical trial of an Ebola vaccine candidate in Kambia District, Northern Sierra Leone during the epidemic, and analyses the role of social science research in ensuring that lessons from the socio-political context, the recent experience of the Ebola outbreak, and learning from previous clinical trials were incorporated in the development of community engagement strategies. The paper aims to provide a case study of an integrated social science and communications system in the start-up phase of the clinical trial.

Methods

The paper is based on qualitative research methods including ethnographic observation, interviews with trial participants and key stakeholder interviews.

Results

Through the case study of EBOVAC Salone, the paper suggests ways in which research can be used to inform communication strategies before and during the setting up of the trial. It explores notions of power, fairness and trust emerging from analysis of the Sierra Leonean context and through ethnographic research, to reflect on three situations in which social scientists and community liaison officers worked together to ensure successful community engagement. Firstly, a section on “power” considers the pitfalls of considering communities as homogeneous and shows the importance of understanding intra-community power dynamics when engaging communities. Secondly, a section on “fairness” shows how local understandings of what is fair can help inform the design of volunteer recruitment strategies. Finally, a section on “trust” highlights how historically rooted rumours can be effectively addressed through active dialogue rather than through an approach focused on correcting misinformation.

Conclusion

The paper firstly emphasises the value of social science in the setting up of clinical trials, in terms of providing an in depth understanding of context and social dynamics. Secondly, the paper suggests the importance of a close collaboration between research and community engagement to effectively confront political and social dynamics, especially in the context of an epidemic.
Footnotes
1
The vaccine being used as the active control is the WHO-prequalified Meningitis ACWY vaccine. This is given as a prime dose at Day 1 and a placebo as the boost dose, except in children under the age of 2 years who are given 2 doses of the active control vaccine.
 
2
Chinese gunpowder tea
 
3
Palm wine
 
4
Commercial motorbikes
 
5
These interpretations, and the expectations that they raised, must also be understood in the context of the traditional practice of paying ‘kola’, a ‘greeting gift’, to authorities and gatekeepers, such as chiefs in order to begin community consultations, as well as the widespread payment of traditional authorities and land custodians in order to facilitate business, such as in the mining industry [48, 49].
 
6
Before carrying out a lottery, the social science team mapped Kambia Town using Global Positioning System (GPS) technology and produced a list of all households in the town, as this was not available at the time.
 
7
Community Focus Group Discussion, Kambia, 23 November 2015
 
8
Key Informant Interview, Kambia, 19 October 2015
 
9
The fact that there may have been accusations of unfairness seems to suggest a particular eagerness (or the expectation of eagerness) to participate amongst Kambia residents in the initial stages, and during the epidemic. This begs the question of what people’s motivation for joining may have been, what perceived incentives may play a role and whether certain selection biases may have been at play. Determining what factors influence participants’ decisions to enroll in the EBOVAC trial is a key component of the social science research taking place throughout the running of the trial. This reflects the contribution that qualitative research can make by highlighting potential ethical issues as they arise during a clinical research project.
 
10
Exit Interview, Kambia, 20.10.2015
 
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Metadata
Title
Power, fairness and trust: understanding and engaging with vaccine trial participants and communities in the setting up the EBOVAC-Salone vaccine trial in Sierra Leone
Authors
Luisa Enria
Shelley Lees
Elizabeth Smout
Thomas Mooney
Angus F. Tengbeh
Bailah Leigh
Brian Greenwood
Deborah Watson-Jones
Heidi Larson
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Public Health / Issue 1/2016
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/s12889-016-3799-x

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