'The Response Is like a Big Ship': Community Feedback as a Case Study of Evidence Uptake and Use in the 2018-2020 Ebola Epidemic in the Democratic Republic of the Congo

"When CF [community feedback] is given to the right decision-makers in an outbreak, in a format that they can understand and use to develop clear recommendations, it can be a highly valuable tool for outbreak response."

One domain of evidence for responding to epidemics involves the collection and use of community feedback (CF) to identify community concerns and incorporate them into decision-making. In responding to the 2018-2020 Ebola outbreak in the Democratic Republic of the Congo (DRC), the DRC Red Cross Society and International Federation of the Red Cross and Red Crescent Societies (IFRC), in collaboration with the United States Centers for Disease Control and Prevention (CDC), set up a programme to routinely and systematically gather CF through its network of Red Cross community volunteers. This paper seeks to understand how the new CF system was used to make operational and strategic decisions in the context of the highly complex nature of this particular outbreak response.

This outbreak took place in the highly complex protracted crisis regions of North Kivu and Ituri. Active conflict, displaced populations, inaccessible terrain, and porous borders were complicated further by violence against staff and assets involved in the Ebola response. Thus, decision-makers had to balance the immediate priorities of outbreak control with larger challenges. Furthermore, most decision-makers had medical or epidemiological backgrounds, and they tended to prefer quantitative evidence. Therefore, qualitative evidence had to be presented in a "quantified" way for uptake by this audience. ("These tensions reflect longstanding debates in quantitative and qualitative research about the appropriateness of the quantification of qualitative work...")

The paper describes the Red Cross CF data collection process, which involved hundreds of Red Cross personnel gathering unstructured feedback from community members in the course of their daily work engaging with communities. At the time of data collection, CF was collected and analysed under the risk communications and community engagement (RCCE) pillar, one of several technical response pillars. Meetings were set up so that those contributing CF could present their latest community collected information for discussion and analysis, with escalation to decision-makers as needed. Between August 2018 and June 2020, the Red Cross CF system generated approximately 300,000 individual verbatim records of feedback collected by over 800 Red Cross volunteers during their routine fieldwork in 29 health zones.

Qualitative data collection took place in November 2019 in Goma and Beni and included document review, observation of meetings and CF activities, key informant interviews, and focus group discussions. Per the researchers, it was not possible or appropriate to involve patients or the public in the design, conduct, or reporting of the research.

The study revealed that the CF data collection and analysis process adhered well to the written operating protocols, which had been changed and adapted over the course of the 17 months of the outbreak. The IFRC and DRC Red Cross were not the only groups engaged in CF data collection. Other non-govenmental organisations (NGOs) had different but complementary methodologies, and all formally collected CF was fed into the RCCE pillar. However, proposed approaches to aggregate CF collected via different organisations and methodologies were not welcomed by all actors. Both the branding or positionality of the organisation collecting data, and of the value of the data itself, affected perceptions of the Red Cross CF system and, therefore, its ability to influence decision-making.

The credibility and use of different evidence types was affected by the experiential and academic backgrounds of the consumers of that evidence. Relatedly, when feedback was presented in a quantitative format (e.g., by tabulating the frequency of certain feedback themes), it was better received by the Ebola response coordination leads than when quotes from feedback were presented. In a landscape of highly competing agendas and with a large number of data points, sources, and recommendations, greater "community resistance" to outbreak response interventions was found to guarantee the attention of decision-makers.

Some interviewees contested the ability of the Ebola response to use evidence with sufficient agility, or indeed at all. Another individual felt that the perception that the response was evidence-based and community-led was tokenistic, since they felt that the CF was insufficiently acknowledged and acted on. Moving evidence into action could be hampered by a number of factors, such as the large number of actors involved in the response, lack of technical know-how, and insufficient coordination. However, respondents did identify good examples of CF evidence use that could be built on. For example:

• Creating demand for CF data was found to be helpful in gathering the support needed to generate recommendations that could be implemented at the field level.
• Where possible, the cocreation of recommendations between CF actors and pillar leadership was felt to be helpful in getting findings taken up and used, as opposed to simply presenting findings and asking the pillars to develop their own recommendations.
• Good leadership was key; action was linked to the engagement of the pillar lead in the process of generation of recommendations. There were several examples of the rapid integration of CF into safe and dignified burial (SDB) protocols, such as one described by a community engagement expert and Beni local around the local importance of burial rites.

Reflecting on the findings, the researchers note that policy change in response to the CF evidence "required engagement and buy-in from a vast number of actors, processes and validation steps. Operationalising any policy change in turn required substantial communication, coordination and training of field staff. Taken together, these processes could take so long to accomplish that communities and response workers often felt that protocols were entirely inflexible, despite all the evidence that a given policy change needed to be made. This 'evidentiary inertia', whereby even credible and voluminous evidence is insufficient to drive changes in policy or operations, emanates from the size, structure and complexity of an epidemic response such as that deployed in the North Kivu and Ituri outbreak."

To address challenges and issues identified in this study, the researchers recommend that future outbreaks using CF systems should:

• Engage humanitarian organisations that are collecting CF (e.g., DRC Red Cross) in strategic and operational coordination structures from early on in the outbreak response.
• Train response leaders in the use of multiple data types, such as by integrating qualitative data training in epidemiological training programmes and in outbreak response training programmes.
• Concider CF collection, analysis, and interpretation to be a particular technical skillset, with clear standards of practice (SOPs) so that any actors engaged in this space in outbreaks are able to feed their data into a centralised system.
• Test different approaches to the presentation of CF data in future outbreaks to create templates that can be easily interpreted by different audiences, including response leadership and staff.
• Establish CF as a key source of intelligence across outbreak response pillars (not just in RCCE), and ensure tracking systems for recommendations are used and acted on both at the strategic and operational levels.
• Cultivate, as a part of outbreak response culture, a willingness to adapt and grow the CF approach over time as new evidence and learning is uncovered.

In conclusion: "CF data collection has both instrumental and intrinsic value for outbreak response and should be normalised as a critical data stream; however, a failure to act on those data can further frustrate communities."