During the preparation phase, the social science and community liaison teams developed a feedback system to inform rapidly research-driven communication strategies. Weekly meetings had three main purposes. Firstly, the social science team provided feedback on community engagement plans based on their research on the socio-cultural context, local community dynamics and perceptions of the vaccine trial. Secondly, the meetings brought up any issues encountered by the trial team or the community liaison staff that required further research by the social science team, such as the design of the recruitment strategies outlined below. Thirdly, the social science team reported on any rumours or concerns identified in the community. These rumours and concerns were communicated to the community liaison team anonymously in order not to breach confidentiality and to maintain the independence of the social science research. Following feedback, the community liaison staff brainstormed strategies to respond to concerns or rumours. Such strategies depended on the specific issue raised, but usually involved considering different and creative avenues for discussion with the community on the issue, reviewing messaging to actively engage with the issue at hand, and determining who the best person in the team was to respond and through which channel. When an urgent or potentially harmful rumour had been identified, this was reported immediately to the trial manager in Kambia and to the principal investigators.
This section of the paper discusses three examples of challenges faced by the trial team during the set-up phase of the study. These case studies reflect how lessons gained from knowledge of the country’s context, the experiences of the Ebola response and knowledge gained during previous trials helped inform the community engagement strategies and responses to issues as they came up. The examples are arranged through three key themes: power, fairness and trust. Each case study begins with a reflection on the context facing the trial team, then offers insights from the ethnographic research and finally considers the implications for community engagement strategies. These case studies elucidate the importance of research-driven mobilisation strategies, as well as the inevitable limitations on trialists’ ability to engage with all aspects of complex community dynamics.
The notion of “community” can often hide its heterogeneous nature and constant, underlying negotiations and contestations of power. The commonly used notion of ‘community’ used for example in public health campaigns and mobilization strategies can in fact hide complexities engendered by struggles over status, authority and economic resources. Questioning whose voice is heard, and the ways in which community ‘leadership’ is contested and in many ways produced by external interventions are at the heart of an understanding of communities as heterogeneous in and in flux. In Sierra Leone, Mariane Ferme has identified an accepted division between public and secret spheres, that is, a widely shared assumption that politics happens in different places, some public and some secret, and that covert strategies play a fundamental role in the working of politics . This means that political intentions are permanently ambiguous, something that Ferme sees as “one of the defining features of postcolonial subjectivity in Sierra Leone” (, p.161). In what she defines as the “dialogics of publicity and secrecy”, overt acts of obedience are often paralleled by covert defiance. This first case study shows how these complicated, contextual and often hidden configurations of power and struggles over economic resources can impact on a vaccine trial’s mobilization strategy.
The challenges posed by community power dynamics became clear from the start of the engagement process. Community engagement for the EBOVAC Salone study began two months before the start of the trial with a series of community meetings, often chaired by various local authorities. The meetings were attended by the community liaison team, who presented information about the trial and who were ready to answer questions from the audience, and by the social science team, whose role was to observe, take notes and provide support if required. The meetings brought together groups of people identified as “key stakeholders”, as representatives of various important societal groups, such as area chiefs, market traders, teachers and civil society activists. At the meetings, stakeholders were provided with information about the trial and were given time to ask questions, raise concerns and offer suggestions.
A few days after one of the community meetings about the EBOVAC Salone Trial, the social science team was approached during daily ethnographic observations by a small group of ‘stakeholders’ who had attended one of the meetings. In exchange for the promise of absolute confidentiality, they asked that their concerns be heard. They reported that, while they had been asked in the EBOVAC Salone public meetings to discuss the vaccine trial with their communities and constituencies through smaller local meetings they felt unable to do so. They asked to meet at a separate time to explain their concerns. The next day the team met the group at one of their homes, and they began telling their story. They recounted how they felt that their position as respected leaders in their community had been undermined and that, as a consequence, their ability to mobilise their communities to participate in the trial was curtailed. They attributed the erosion of their power to the ‘selfishness’ of those they identified as ‘big’ leaders in Kambia, whom they blamed for failing to share the financial resources coming into the district. They voiced an assumption that powerful leaders must have ‘eaten’ significant amounts of Ebola funds before it could reach their communities.Footnote 5 Emphasising the correlation between financial power and ability to command respect in their communities, these ‘small’ leaders argued that due to their economic struggles, they found themselves having to resort to borrowing money from their community members, which diminished their ability to command respect.
Regardless of the veracity or legitimacy of these allegations, these assumptions about the role of powerful authorities were widely reported during ethnographic research and they created significant amounts of discontent and quiet mistrust in authority figures in Kambia, as evidenced by the ‘small leaders’ private confessions. Despite dancing and clapping at public meetings, these ‘small’ leaders argued that they were unable and unwilling to act as spokespeople for local matters such as the vaccine trial, because they felt that their communities no longer respected them.
Although it was unclear whether this was in fact the reason for their decision to refrain from supporting the vaccine trial through the organisation of area meetings, the community leaders utilised these conversations to voice their dissatisfaction with the present structure of authority. Their arguments point to the importance of taking into account what are essential, but often hidden and unspoken, contestations of power within communities. The “dialogics between publicity and secrecy” exemplified by the reluctance to hold public meetings despite their public assertions of support, offers a salient example of the broader importance of taking into account the heterogeneity of community. Whilst community engagement meetings appeared to be received positively in Kambia, such manifest support could not be assumed to translate into community-wide acceptance. Insights such as those from the “small” leaders reveal that established power structures are not indisputably representative, nor are appointed leaders necessarily trusted by all sections of the population. Internal struggles over status and economic resources, as well as mistrust and disputes over rightful loci of authority must be taken into account. This cognizance of the contested nature of power undoubtedly creates its own challenges. Undoubtedly, having key and recognised stakeholders at the EBOVAC Salone community meetings was extremely valuable and its significance for a large number of Kambians cannot be underestimated. However, recognising that power is not always straightforward and that communities are fragmented is an important foundation for building more nuanced, sensitive and genuine engagement.
Ethnographic observation’s illustration of the deep-rooted contestations of power put forward by the “small” leaders and the political economy underpinning them, cannot be directly addressed by a community engagement team in a clinical trial. However, the social science and community liaison teams’ ability to identify such dynamics made it possible to initiate internal discussions about how to reconcile the importance of involving established authorities while diversifying engagement strategies to reach different sections of the community. This meant for example holding targeted sensitisation sessions in areas such as markets and popular meeting places, and holding radio talk shows in addition to key community leader-led meetings.
Notions of fairness are inevitably shaped by local understandings of morality, historical legacies and individual experiences . In Sierra Leone, conversations around fairness often revolve around the widespread assumption that access to resources relies on having a strong sababu, that is, a connection with people in positions of power. Lacking a sababu is frequently cited as a key reason why large numbers of Sierra Leoneans live in poverty, with limited access to jobs and basic healthcare . Strong critiques of “connectocracy”, furthermore, are paralleled by assumptions that nepotism is the only way to access resources. Beliefs about fairness were also central to the unfolding of the ten year civil war, for example as discontent surrounding chiefly abuse of powers in terms of forced community labour demanded of young men, featured prominently in combatants’ accounts of their motivations for joining rebelling forces .
In clinical research the notion of fairness emerges at several stages of the research, from concerns about equal treatment of control and treatment groups, to issues of compensation and the addressing of potential medical complications. In the initial stages of trial design, which this paper focuses on, engaging with local ideas of fairness was an especially important in trialists’ discussions surrounding the design of a volunteer recruitment strategy. The senior investigators and trial team expected the issue of participant recruitment in EBOVAC Salone to be challenging, especially in an epidemic context, in a country with little experience of clinical trials. Consequently, the design of a recruitment strategy was discussed at length, combining senior trialists’ expertise of vaccine trials in other contexts with conversations with local staff and anthropological insights. As Ezekiel et al. have pointed out: fair selection of the study population is a key benchmark of ethical clinical research in developing countries . As such, the trial team had to consider not only their own understandings of what would be an effective trial design that would ensure that the results it provided would be scientifically valid and representative of the community as a whole, but also how the Kambia community would perceive the selection of volunteers.
Initial discussions centred on a number of design options, including individuals coming directly to the clinic to volunteer or having a key authority figure canvass for volunteers. Given the context discussed above, these options raised concerns that the trial would be liable to complaints of unfairness, as well as the fact that the enrolled participants would be likely to be unrepresentative of the population as a whole. Firstly, given assumptions that access to resources is assumed to be based on “connectocracy”, there was the potential that, given the limited number of participants required, people could have assumed that the “big ones” were picking themselves and those they knew. On the other hand, using key authority figures to compile a list of volunteers, or asking key stakeholders to be the first volunteers could have led to accusations of forced participation. Given Sierra Leone’s history of conflict, the potential for participant recruitment to be likened to forced conscription also added sensitivities for the trial recruitment process.
In consideration of these concerns, and after extensive consultation with the principal investigators, trial sponsor and the trial manager, the community liaison team opted for a public lottery of household numbers followed by individual visits through which people would be offered the opportunity to volunteer in the vaccine trial. This involved inviting community members to observe and take part in the selection of 100 households (to begin with) from a bag containing all household numbers in Kambia town.Footnote 6 These households were then visited individually by community liaison officers who explained in detail the purpose and procedures of the trial and voluntary nature of the process and provided these randomly selected households with the opportunity to volunteer.
Notions of fairness, like power, are contested and there are limitations in the extent to which any design can avoid criticism. For example, as initial fears surrounding the new vaccine trial subsided, some community members expressed worries that the lottery system would not be able to taking into account those who were eager to take the vaccine.Footnote 7 However, as one civil society activist noted, using a lottery system meant that “bad name done komot dae” (the trial has avoided a bad reputation).Footnote 8 Had it not been done through a public lottery, she argued, allegations of unfairness would have been widespread.Footnote 9
A major challenge in preparing for this vaccine trial in Sierra Leone during the Ebola epidemic was the high levels of fear and mistrust which, as discussed, had develop through a history of oppressive rule and conflict. The epidemic was accompanied by a plethora of stories and rumours that starkly exposed the lack of confidence in government authorities, medical practitioners, and external agencies [6, 45, 46]. This was made clear by the widespread belief that Ebola was a man-made, population control strategy in view of the next Presidential elections; that people were killed inside ambulances by being asphyxiated by chlorine; or that new cases were fabricated in order for Ebola response workers to profit from the protracted crisis [6, 47] These rumours have too often been treated as a sign that populations are “misinformed” at best, “ignorant” at worst, and are thus simply in need of better information in order to change their behaviour . However, these rumours reflect broader anxieties rooted in a much deeper socio-political context, and explain resistance to the Ebola response at the height of the epidemic. Anxieties surrounding the government’s and international partners’ plans reveal fractures in citizens’ trust in the healthcare sector, which is seen as corrupt and inefficient, and reflects the fragility of the social contract rebuilt in the aftermath of Sierra Leone’s civil war. Understanding public perceptions, rumours and concerns in this fragile context and creating multiple forums for dialogue and trust-building, were an essential foundation for more trial-specific community engagement.
As communities learned about the planned vaccine trial in Kambia, the ethnography revealed that concerns surrounding the Ebola outbreak and the response to it were initially transposed to ideas about what the trial would involve. One evening, when the social science team discussed perceptions of the vaccine trial with a group of young men, one of them said he had a concern he had previously been ashamed to share. He said that he had heard that there was a “world blood bank” that was lacking type O blood. He argued that survival at the Ebola treatment centres had been determined by one’s blood type, as those with type O blood were killed for their blood. Survivors were those whose blood type was not needed by the world blood bank and who were thus allowed to return to their communities alive. He reported that he had been afraid during the Ebola outbreak because he knew his blood type was O. Having heard in several community meetings that blood would be taken during the process of the vaccine trial, he asked whether this was actually a continuation of the blood stealing that he believed had been going on since the outbreak of Ebola.
In other ethnographic encounters in Kambia’s key congregation areas, the social science team frequently recorded links being drawn between the epidemic and the vaccine study by referring to the impending trial as “Ebola Phase Two”. As with the young man’s concern about blood stealing, this title referred to the concern that the trial might be a plan to “finish off” those who had managed to escape death during the outbreak. As one trial participant put it when discussing the rumours he had heard that “[the vaccine] is a slow poison the white man has made to kill us”.Footnote 10
While maintaining a commitment to the confidential nature of research conversations, the social science team alerted the community liaison team when these fears and articulations of mistrust emerged. The community liaison team responded by visiting areas such as the town’s market where the idea of the vaccine being “Ebola Phase Two” had taken root. Being aware of the particular nature of anxieties surrounding blood-donation in the context of the Ebola outbreak meant that the community liaison team encouraged debates and conversations through community meetings, one-on-one conversations and radio shows to discuss the role of blood taking in the vaccine trial. They provided explicit information about the destination and use of blood samples and the fact that samples could be destroyed if the participant so wished once the study was over. They also invited questions, challenges and suggestions. Representatives of different societal groups who had previously attended community engagement events hosted their own meetings, which the community liaison team attended as guests, encouraged open and often heated debates, and also enabled the creation of spaces for expressing and confronting anxieties rather than simply rejecting them as misinformation.
In another example, community meetings and ethnographic encounters brought up the issue of the insurance that would be provided for participants in case of any long-term side-effects from the vaccine. This had sparked worried conversations about the likelihood that if the trial provided insurance it meant the trialists expected people to die in the process. Concerns identified by the social science team were fed back to the community liaison team. The team developed a strategy to help allay fears around this rumour, including a new message about the provision of insurance that also emphasised the safety of the vaccine. An influential individual in that particular community, who had worked with the community liaison team, volunteered to assist with disseminating the message and dispelling the rumour through discussions in the area where the rumour had emerged.
Such rumours represent more generalised concerns about medical interventions; they are not simple misunderstandings but are rather rooted in histories of exploitation and mistrust. Therefore, whilst immediate messaging was seen to be important, the main role of the teams was to develop communication to understand community concerns, and the drivers behind these concerns, and to work to build trust through ongoing active and inclusive dialogue.