Openness

In considering public participation in the regulation of health technologies, Graham and Jones define openness as engagement with and a willingness to incorporate multiple perspectives.35 In this sense, openness becomes an orientation towards collaboration that is ‘two-way, where information flows in multiple directions through engaged exchange and discussion’35 (p 341).

In our data, engaging openness as a social technology proved to be a key component of trustworthy relationships. For example, a Guinean government researcher valued the relative transparency of one particular clinical study team, appreciating that ‘all the documents were on my desk in front of me’ to work with and comment on. These actions resulted in a relationship of ongoing exchange and interaction, where the researcher and clinical trial investigator developed a friendship, borrowed belongings and discussed study proceedings freely.

Openness also played out between Ebola patients’ families and staff at Ebola treatment centres (ETC). After their initial failure to dispel rumours about stolen family members whose bodies, blood and bones were being sold in Europe, along with other violent misunderstandings circulating at the time,6 some ETCs installed plastic sheeting to reassure families and patients and allow them to see one another (International humanitarian responder). Further, healthcare providers began fostering trust, countering existing suspicions by engaging families in the Ebola diagnostic process:

I would just basically walk [families] through the first assay and then the second one and show them the visual results. And when you see this curve, that either stays flat or is negative, or goes up and is positive, or you would see the wells after the ELISA which are bright green if it’s positive or blank when it’s negative. They really started to believe, and they trusted us because we were completely open and honest about what we were seeing. [emphasis added] (International virologist in Sierra Leone)

Some ETCs encouraged staff to go into communities to interact and establish relationships with their patients’ families, cultivating an ongoing open exchange:

We’d take photographs of the patient, if they were well enough…say ‘This is where they are, this is what they’ve got, we’re waiting for the results’…if the families weren’t in quarantine…then we would encourage them to come spend as much time as they wanted in the ETC…[we also] give them our hotline telephone number and they could phone in at any time…through the progress of the patient, keep them up to date with what’s happening. (International nurse)

Since there are value decisions surrounding what will be made open, how, by and for whom, openness demands constant ‘articulations of what is valuable and what relationships exist to generate, ensure and reinforce such value’.36 ,37 We caution then that techniques of openness are neither inherently positive nor negative. Openness can, however, create avenues for establishing trustworthy relationships in an epidemic context, especially when found in tandem with accountability and reflexivity.35 In the case of the West African Ebola response, our findings indicate that openness was particularly valued when its application was relevant, socially contextualised and adaptive to the continually changing nature of epidemic response needs. Consequently, openness often orbited and intersected with reflexivity.

Reflexivity

Reflexivity provides a space for creating and sustaining a dialogue between those with conflicting knowledge systems. In this space, a plurality of potential standpoints and explanatory models can be recognised and encouraged to coexist.35 From this analytic perspective, reflexivity is conveyed, ‘not through a predetermined kit of approaches from which they can draw ‘the perfect tool’, but rather, by assessing each case according to the best way to deal with its particularities’.35

Trustworthy response efforts address these ‘particularities’. In Liberia, one international institution found a way to bridge the disconnect between official response policies and the priorities of those affected by adapting community toolkits originally designed for HIV prevention to accommodate the Ebola outbreak:

[It became] very clear that Ebola was not the primary issue in most of these communities. So we had to then, as we’re going through the training, modify and adapt and give people a much more flexible version, you know like, ‘Here’s the Ebola Facilitator’s Guide, but actually you’re probably gonna want to talk about other issues like routine immunization or you know, malaria, or whatever.’ So creating a… partner guide that enabled the facilitators [to address] whatever worthy identified needs [arose] in the community. (International academic with experience in Sierra Leone, Liberia and Guinea)

Other responders exhibited reflexivity by shifting their communication strategies from top-down to bottom-up, adopting reciprocal approaches that established and respectfully encouraged constant feedback from people on the ground in affected communities. Rather than providing a standardised message, an international medical responder working in Sierra Leone recalled the importance of engaging local leaders in conversation:

I think that they were really listening, and they wanted to know what can we do to prevent it and how can we incorporate the advices that I gave into their daily life…of course many things that can be difficult when you have these cultural differences, so when I told them that they should avoid touching other people then there was one of the chiefs asking, ‘What do I do then when I have,’ I don’t know how many it was, ‘8 wives and they all wanted to be satisfied?’ so it was really for me, also, an eye opener. (International physician working in Sierra Leone)

In return, this physician addressed the leaders’ questions and concerns and provided tools, such as photos of the virus itself, to complement biomedical descriptions of Ebola to communities in their own words. She emphasised that ‘these two hour meetings with the community made a bigger impact than the work I did at the hospital,’ describing their improved communication as a product of increased ‘understanding of each other’.

Effective solutions often involved looking beyond standardised recommendations and reflexively engaged affected individuals in an ongoing exchange of information and experiences:

Everything we learned during the Ebola response we learned in the field, in the face of death and crisis. The messages you see were created, crossed-out, taken up, and tested in the field. If it didn’t work, we’d re-examine and move forward [with a better solution]. (National government laboratory technician)

This sentiment was echoed by an international responder’s encounter with a Sierra Leonean-led ETC that found ways to maintain a safe touch policy despite official recommendations to avoid touch between all individuals. The medical and interpersonal success of this choice demonstrates the importance of reflexivity to responding to priorities on the ground. Lack of touch was extremely isolating for staff and patients in an already intense environment. The relationships between all involved benefitted from the ETC’s commitment to care.

The common perception expressed by a local humanitarian responder that everything was ‘learned by doing’ reinforced the notion that learning happens best in practice, on the ground, rather than in far-off international boardrooms. Constantly restrategising messages with direct feedback and input from communities was vital. In fact, communication was more effective once ‘we started visiting the people, going into the community, getting people to lead the fight themselves’ (Local humanitarian responder).

Accountability

Accountability involves ‘accepting responsibility for the consequences of decisions’35 (p 339). According to an international humanitarian responder, this technology to establish trust necessitates a ‘feedback loop’ between all potential actors to facilitate their plural needs being addressed. When formal response strategies, such as contact tracing or resource distribution, failed to include local knowledge38 or were deemed untrustworthy, our data show responders often actively took intervention on as their responsibility, they felt and acted on a responsibility to respond using local advice in a timely way to address emergent priorities on the ground.

For example, two responders, a national social anthropologist and an international virologist, were concerned that food was not being properly delivered by the responsible parties. The national responder suspected corruption of the ‘middle man’ in the food delivery chain:

When the response first broke out, one [of] the hardest hit areas was my hometown…at that time it was really chaotic. People were going for days without food under quarantine. And I remember…the quarantine manager saying you know, they are raising the funds from [city] and I’m thinking ‘well how is that possible when they have just given money to the people to help out?’ So I then started buying food out of my own pockets using my own money and delivering this food directly to the quarantine homes. Because I was concerned using the middle man that’s why the food wasn’t getting to the people because there was a lot of rumours about people diverting the food for their own use. (National social anthropologist working for a humanitarian organisation)

Demonstrating accountability to her hometown, this responder removed the ‘middle man’ and took responsibility for food delivery, ensuring the needs of those in quarantine were met.

The international virologist also began a food delivery service, although with a slightly different motivation. Rather than corruption, this responder was frustrated with the poor prioritisation of needs on the ground by those distributing resources from the city centres:

[City 1] was focusing on small non-essential things. What shocked me was maybe the hours of conversation they had about hand sanitizer…well, we need ambulances, we need doctors, we need medicine, we need fuel to make the generators run…We need like, y’know, food for the patients! I had to call my expat friends in [City 2] that, starting tonight, we don’t have any food to feed 30 patients in [City 2] and 30 patients in [City 3]! That was early/mid-June [2014] …they got together and they gave 1000 euros and they set up like a couple of cooks, and we started giving all these patients daily free meals! Just a couple of expat kids, right. And then after three weeks, oh! Well suddenly [International Organization] came in. Which was great and amazing…but why in the hell did it take that long? And why did [International Organization] come in because of a couple of emails that I sent to [City 1]—like how on earth were they not requisitioned immediately by the [City 1] National Task Force meetings. (International virologist in Sierra Leone)

Thus, when formal strategies were disconnected from priorities on the ground, ‘just a couple of expat kids’ stepped up and made themselves accountable to ensure their community’s needs were adequately met. Similar circumstances sparked a community initiative run entirely by volunteers who provided care for Ebola orphans and ensured they could still go to school (Local programme manager for a religious humanitarian organisation). Other examples of such techniques included communities screening themselves for Ebola and sending their children to volunteer for Ebola hotlines (International director of a humanitarian organisation; National social anthropologist for a humanitarian organisation; International virologist in Sierra Leone).

Moving beyond acts of accepting or taking responsibility, responders demonstrated that techniques of accountability prioritise long-term commitments and community care. For instance, engaging as a member of the community and interacting on a day-to-day basis outside of the context of the ETC or vaccine trial influenced perceived levels of trustworthiness (National Guinean regional response coordinator). Trustworthiness of these microlevel day-to-day interactions has long been recognised in religious communities:

Religious structures, especially in that affected area, still are given much credibility and respect. The messages we were able to pass through our community mobilization and education efforts were heard and accepted because they also saw the other kinds of caring work that was being done by the church. [emphasis added] (International director of a religious humanitarian organisation working in Sierra Leone and Liberia)

Expanding on our notion of accountability, caring relationships are important components of trust in secular response. For instance, a Liberian responder working for a local women’s group described the importance of consistency and investment in the community’s well-being as key to the community’s trust in the group: ‘currently we were there for them, after the quarantine we also are there for them. So, they trust us’. An international nurse valued the cohesiveness of a locally staffed ETC. She contrasted this to an ETC staffed by a team of international volunteers, who ‘would come and do six to eight weeks, but they weren’t a team’. These responders emphasised the importance of being accountable beyond Ebola—by focusing primarily on providing care, rather than on providing interventions, their messages were more likely to be accepted.

People took responsibility for others and became accountable through caring for one another, regardless of previous formal training:

…people were utterly dying, because healthcare was so scarce…half of us were afraid to touch them…Most hospitals were closed, so they brought in something they called a home care, that is, you go take care of Ebola patients or any other sickness…I really enjoyed that part, where people would care for their sick relatives with health care and try and conquer a disease…, it’s really effective because everybody started doing it, even if you are not a healthcare professional, once you do it, learn it, you can take care of people. The lady who brought that idea, she took care of more than twenty patients with Ebola, and she was not even a [healthcare] professional…she was a social worker. [emphasis added] (Local research assistant for a humanitarian organisation)

A Liberian women’s group led a similar initiative called ‘room care’ that involved training women to take care of their family members at home during the peak of the outbreak. A local woman working for this group regarded room care as their most effective effort as trainees shared their knowledge, leading to an increase in hand washing in the wider community.

Similarly, training people to perform safe burials promoted feelings of cohesiveness and trust when these communal rituals helped to ‘get rid of their tragic memories and ease pain…by restoring peace in the community’ (Local executive director of a Sierra Leonean psychosocial organisation).

Trustworthy, meaningful contributions to epidemic response came from a wide variety of actors; accountable response took many forms, including commitment to training and training the trainers, and being willing to care for those in need.