Perceptions of research conducted during the 2014-15 Ebola crisis

Purpose

The qualitative study aimed to investigate whether WHO and international research ethics guidelines were feasible, sufficient, and lived as best practice across diverse West African contexts during the Ebola crisis 2014-16. Specifically, it explored what upholding standards of ethical research actually meant during the Ebola outbreak, in the eyes of those directly involved in this research or its oversight.

Outcomes

A literature review was successfully conducted. This was followed by over 100 in-depth interviews with Ebola survivors from Sierra Leone, Guinea, and Liberia, and those involved in the response and in conducting research. Information was grouped into a number of themes: context-specific accounts of ethics guidelines in clinical trials; barriers to and strategies for harmonising with WHO and other ethics standards; lessons learned or issues experienced by participants; complexities of ethics governance and of international research collaborations in a public health crisis situation.

Key findings

• Therapeutic misconceptions were frequent amongst many research participants
• Therapeutic optimism (when a research participant expects to directly benefit from the research) was common amongst research participants and West African investigators, which impacted on research staff framing and participant understanding of recruitment
• Responsible delineation between care and research is needed to avoid situations where participation becomes the only means of accessing care.
• Limited restitution of findings to research participants produced feelings of frustration and disappointment amongst many participants
• International collaboration built significant local capacities in research and oversights, but further work is needed to promote more equitable sharing of authority, decision-making, and long-term benefits in such research between local and non-African researchers.

Key outputs

• A report on research participants’ perceptions of EVD research
• A review of the literature on ethical challenges of conducting research during the West Africa EVD epidemic
• A briefing sheet on international research collaborations and meaningful participation of researchers based in the country/region
• Following request for such action, a series of research participation decision-making tools (films, visual aids) are being developed (2018-2020) with and for limited literacy research participants in Ebola-affected regions
• A number of tools/guidance notes will be produced for humanitarian practitioners, including: lessons for research ethics governance; promoting free and informed consent during public health crisis situations; guidance for humanitarian organisations on the restitution of findings and supporting participant/patient privacy.