Community engagement: the key to successful Ebola research

Community engagement is a process of developing relationships that enable stakeholders to work together to address healthrelated issues and promote well-being. Ideally, it should draw on locally contextualised meanings derived from experiences and lessons learnt during the implementation of community engagement activities. These activities include informationsharing with stakeholders and getting feedback, deliberate steps to close feedback loops, small doable actions to resolve community challenges and encourage meaningful dialogue that aim at reaching a consensus between communities and those engaging with them.

Community engagement is rooted in the demands of community leaders, policy-makers and funders for meaningful community involvement to address health problems. As such, it is a key pillar of research. It increases a community’s understanding of issues under study, and enhances the ability of researchers to understand community priorities, the importance of addressing community priorities and the need for culturally sensitive approaches to communications and research. Syed M. Ahmed and Ann-Gel S. Palermo, ‘Community Engagement in Research: Frameworks for Education and Peer Review’, American Journal of Public Health, 100(8), August 2010).

Interventions can have a positive impact on a wide range of health outcomes, but there is insufficient evidence to identify whether one particular model of engagement is more effective than another. E. De Weger et al., ‘Achieving Successful Community Engagement: A Rapid Realist Review’, BMC Health Services Research, April 2018. It is also difficult to disentangle the contribution of community engagement from the other strategies usually employed to ensure successful interventions. Alison O’Mara-Eves et al., ‘The Effectiveness of Community Engagement in Public Health Interventions for Disadvantaged Groups: A Meta-analysis’, BMC Public Health, February, 2015. This is probably one of the reasons why, conventionally, organisations and institutions implementing activities or conducting research in Uganda have often not adequately taken community engagement into consideration, or allocated a very small budget to it. Only very recently have global funding bodies such as the Wellcome Trust and the Bill and Melinda Gates Foundation begun to promote and offer specific funding for community engagement, in addition to research and programme funding.

In the past decade, Uganda has seen the professionalisation of community engagement in the conduct of biomedical research, based largely on the concept of Good Participatory Practice (GPP) for Biomedical Research, developed by the Global Advocacy for HIV Prevention (AVAC) and the Joint United Nations Programme for HIV/AIDS (UNAIDS). Natasha Mack et al., ‘Implementing Good Participatory Practice Guidelines in the FEM-PrEP Preexposure Prophylaxis Trial for HIV Prevention among African Women: A Focus on Local Stakeholder Involvement’, Open Access Journal of Clinical Trials, October 2013. Prior to the launch of the guidelines in 2011, there was limited documentation of how community engagement for biomedical HIV prevention research should be conducted. The guidelines provide advice and a formalised framework for funders and researchers on how to engage communities in the design and conduct of biomedical research. Like the Good Clinical Practice (GCP) principles, GPP is based on the principles of beneficence, respect, accountability and transparency. In July 2014, the Uganda National Council of Science and Technology (UNCST) launched and incorporated GPP principles in the National Guidelines for Research Involving Humans as Research Participants, and since then the guidelines have been adopted by research institutions in Uganda. Given the initial focus on HIV prevention research, the guidelines cannot be adapted wholesale to non-HIV clinical trials, though AVAC and other partners have modified them for trials of emerging (and re-emerging) pathogens likely to cause severe outbreaks, and for which few or no medical counter-measures exist. Catherine Hankins, Outcome Document of the Consultative Process, World Health Organization, Dakar, December 2016.

Regardless of the absence of uniform guidelines, community engagement and their strategic involvement have often emerged as important and necessary for supporting the involvement and retention of research participants in studies. Makerere University Walter Reed Project (MUWRP), a research organisation, has engaged communities and other key stakeholders for community education, recruitment and retention in various clinical studies, including Ebola vaccine studies in Kampala, and has also been part of government efforts in south-west Uganda to build supportive structures for Ebola preparedness and response at Fort Portal Regional Referral Hospital.

MUWRP has been at the forefront of Ebola vaccine research since 2009, when it conducted the first Ebola and Marburg vaccine trial in Africa. Hannah Kibuuka et al., ‘DNA Vaccines Assessed Separately and Concomitantly in Healthy Ugandan Adults: A Phase 1b, Randomised, Doubleblind, Placebo-controlled Clinical Trial’, The Lancet, December 2014. Given that the local population was unaware of Ebola clinical research, MUWRP used a multichannel approach to keep communities informed. MUWRP has used the same approach for subsequent Ebola vaccine trials, including stakeholder meetings, high-level dialogue with parliamentarians, participation in local events such as National Health Days, ongoing dialogue with communitybased organisations, town hall meetings, radio and television talk shows, NGO forums and engagement with the MUWRP Community Advisory Board (CAB).

MUWRP has used the lessons from community engagement activities in other Ebola vaccine trials, recruiting from a range of population groups including adolescents and children. According to Jauhara Nanyondo, MUWRP’s Community Outreach Coordinator, in her 12 years’ experience ‘We had never conducted clinical trials that enrolled children. Consent not only involved the research participant alone, but also the parents/ guardians, which made the recruitment process longer and more complex’. The solution to this challenge was to enroll older participants (18+) first, inform them of the intention to recruit children aged between six and 17 and seek their permission to enroll their own children.

Whereas community engagement is central to public health research and interventions, it is even more important to ensure the buy-in and meaningful participation of communities during an actual public health emergency. Lessons from Ebola outbreaks in North Kivu in the Democratic Republic of Congo (DRC) and in West Africa underscore the crucial role of community engagement in ensuring better outcomes for Ebola research, preparedness and response activities. For example, strong community resistance and low levels of trust towards the Ebola response severely hindered the implementation of Infection Prevention Control (IPC) programmes. In some instances, this resulted in attacks on response workers and health facilities. Community engagement in such settings puts communities at the heart of the response by building transparent, meaningful, collaborative and mutually beneficial relationships with interested or affected individuals, groups, organisations and government bodies, with the ultimate goal of achieving acceptable health standards.

The importance of incorporating community engagement in Ebola programming and research, especially during outbreak response, is becoming more and more apparent. The challenges and lessons from the DRC and West Africa have helped to highlight gaps that current and future programming on Ebola will address. For example, there is a need to address issues around inadequate communication with communities, misconceptions around the disease, limited knowledge of local culture and customs among response actors and a lack of involvement of local communities in control strategies, including handling suspected cases and safe burial.

Recently, MUWRP has partnered with the International Rescue Committee (IRC) to conduct a study to evaluate a newly designed community engagement model that seeks to place power in the hands of key community members to develop and execute action plans to increase awareness and uptake of Ebola prevention behaviours, as part of IRC’s Ebola preparedness activities in Kasese District in Uganda. The model, which we called ‘Active Listening Sessions’, embraced two key principles: ensuring strong feedback loops that support two-way dialogue between the community and responders; and ensuring community ownership of Ebola prevention and response. Participants were selected based on their risk of exposure to Ebola, social influence and willingness to engage, and had an identifiable community member (ambassador or champion) to support the work. For the study, we engaged women’s groups, village health teams and community health workers. Over the course of four meetings spread out over 1–2-week increments, groups developed action plans to disseminate key messages in their communities. We are in the process of synthesising the results to determine how involving community engagement activity in a systematic way can improve trust in and compliance with prevention measures during Ebola preparedness and response.

MUWRP’s community engagement work has contributed to a deeper understanding of communities’ culture, perceptions, social networks, political and power structures, norms and values. It has also helped the Community Outreach team to define demographic trends and record past experiences of Ebola and other hemorrhagic fevers, and enabled formal and informal community leaders to support public health research.

Our experience demonstrates that community engagement is critical in establishing and maintaining community involvement in Ebola research. We have learned that this is a complex process that calls for perseverance, commitment, expertise and dedicated resources. We are yet to establish how relevant and practical our engagement model could be in terms of risk communication and social mobilisation during emergencies, but the lessons learned from supporting Ebola research have greatly improved our understanding of community perceptions of the disease, and can inform the development of innovative community engagement in emergencies.

Stephen Mugamba is Documentation Officer at the Makerere University Walter Reed Project (MUWRP). Jauhara Nanyondo is Coordinator, Community Outreach Department, MUWRP. Monica Millard is Uganda Program Director at the US Army Medical Research Directorate – Africa/Uganda (Kampala, Uganda), Walter Reed Army Institute of Research (WRAIR). Naoko Kozuki is Senior Health Researcher with the International Research Committee. Hannah Kibuuka is Executive Director of the MUWRP.