This case study series documents the experience of R2HC-funded research teams in engaging with people affected by crisis. The full case series can be found here.

STUDY BACKGROUND

Perceptions of research conducted during the 2014-2016 Ebola crisis

This project was a collaboration between McMaster University in Canada, the Comité National d’Éthique pour la Recherche en Santé and the Humanitarian Health Ethics research group.

When the 2014-2016 West African Ebola outbreak hit, no vaccines or treatment had yet been shown to be effective against the disease. As the epidemic grew and spread, research trials assessing potential agents were rolled out. Yet the extent to which ethical research standards could be upheld in this challenging context was not clear; little evidence was available on good ethical practices in these contexts. This research study, conducted in three countries affected by the West African Ebola epidemic, draws on the perspectives of people who were directly involved in Ebola research to better understand the social and moral experiences of research participants and explore the implications for good practice.

The study produced reflections on ethical research partnerships, producing a paper ‘From Tokenism to Meaningful Partnerships’ outlining ‘possible strategies to move toward the goal of authentic partnerships during humanitarian health research’ (see link below).

APPROACHES TO ENGAGEMENT WITH PEOPLE AFFECTED BY CRISES

DESIGN PHASE

The research team was cognisant of the time-constraints on their partners, and thus ensured their engagement by consulting them at the design phase to help define the project early on so that the partners could be involved to the extent feasible for their own capacity.

IMPLEMENTATION PHASE

Partnerships with key community actors

Ebola survivors had been extensively engaged as research participants during the Ebola outbreak and afterwards, yet they had not always been considered equal participants and their views had not always been considered. By engaging with community representatives from the Ebola survivor communities in Guinea and Sierra Leone, this study was able to ensure that the perspectives of survivors were not only heard, but also used to implement the study.

“They [research team] strengthened our capacity through trainings and involvement in the research and we also improved their research by guiding them about how best to approach and engage with people like us. As Ebola survivors we now no longer get that stigma and pain which comes from participating in research about our experience”
– Yusuf Kabba, Sierra Leone Association of Ebola Survivors President

A safe space for survivors to talk

Survivors were engaged not only as research participants, but also as community members with clear information needs that could be met through discussion and conversation with other survivors and with the research team. By creating a safe space where survivors could talk about their experiences, and have questions answered about their medical conditions, this study reduced the power imbalance of researchers and participants. Furthermore, with the additional information and skills that the survivors gained as a result of the study, they were able to successfully lobby for improved health and social care options for survivors with ongoing sequalae from their Ebola infection.

“…because before this we were not friendly to researchers… we had been subjected to so many research studies but they were treating us like guinea pigs… but this one was very different because it gave us the opportunity to ask questions and even get to know more about the [Ebola] disease itself, things which we were not told in treatment centres or hospitals when people would go back asking for answers… We were able to understand why some people had problems with eyesight, why about 4% of all survivors experienced hearing problems and many others. We took this information to the healthworkers and some of them used this to get funding to address our health challenges”
- Yusuf Kabba, Sierra Leone Association of Ebola Survivors President

POST-RESEARCH PHASE

Partnership with ethics boards

Thanks to this research a robust partnership was formed with national ethics boards in Sierra Leone and Guinea, which has resulted in these boards including community member representatives for the first time.

“The National Research Ethics Committee really evolved into new processes… following our work with them and them realizing the need, they brought on Ebola survivors as permanent members. These highly experienced, highly senior [people], were very humble in terms of reaching out for advice on how to ensure that the research is not perceived or in a position to do harm to a population that already is on guard against foreigners.”
- Elysée Nouvet, Study team member

Influencing humanitarian organisation research ethics practices

Dissemination approaches included presenting study findings at events convened by and for the Ebola survivor community, that included representation from large international NGOs and UN Agencies. The lessons learned on how to ethically engage communities and research participants in research in outbreak situations has been integrated into a toolbox that are available to guide ethics processes for humanitarian agencies (see below).

ENABLERS OF PARTICIPATION

Having key informants who were also members of the Ebola survivor community was essential in capturing significant learnings. These informants were able to bring the research team along with them on retrospective journeys to locations like Ebola treatment centres, bringing these histories to life.

FIND OUT MORE

To find out more about this research, please see the study profile, literature review and report.

The above-mentioned paper and ethics toolbox are linked. Additional findings can be found in this paper, and in the chapter ‘Conditions from Conakry: Enacting shared benefits in global health research’ in the book entitled: Equity in Global Health Research published by Taylor &; Francis.

ACKNOWLEDGEMENTS

With thanks to Professor Oumou Younoussa Bah-Sow, Yusuf Kabba, Elysée Nouvet for their contributions to this case study, and the study team, partners, and study participants for their contributions to this research.