By Morenike Oluwatoyin Folayan

There are concerns raised about the social value of conducting research in such situations like the Ebola epidemic in West Africa where the infectious disease epidemic resulted in high mortality and morbidity associated with Ebola.

These concerns ignited debates on the justification for the conduct of randomised placebo-controlled trials, prioritisation of resources, compassionate access to unapproved therapies, and the balancing of research and public health action.

There were also discussions on how the histories of civil war and political violence will affect the epidemic response including making appropriate choices about clinical trial design.

Responding to these concerns, several articles were written including normative commentaries, empirical research; and substantive guidance documents were developed by researchers and public health practitioners alike.

While the multiple debates had shared the perspectives of researchers- clinical trialists, social scientists, academics, bioethicists – there has been little heard from communities themselves about their perspective on the issues.

Folayan and her colleagues [1] therefore conducted an extensive consultative process with community members in West Africa, including persons involved with Ebola clinical trials in West Africa, with the aim of reaching consensus on their perspective of what type of research should be priorities and appropriate clinical trial designs during such epidemics like that witnessed during the Ebola epidemic in West Africa.

One of the consensuses reached was that during an infectious disease outbreak, research studies that focus on mitigating suffering in the present and those that seek to identify means of prevention in future epidemics are those that need to be prioritised.

Also, where there are various unknowns and uncertainties about the utility of existing medications and the existing clinical care pathways and systems to cope with an epidemic, research that explored improved or novel ways to address disease conditions and health systems challenges that would provide affected persons with the best chances of survival should be prioritized during the phase of an epidemic when fatality is high.

In addition, researchers should use study designs that increase the prospect of including affected populations as study participants, and should make it possible for the participants to access therapy with known or unknown efficacy, when or where available.

Finally, research conducted during a self-limiting infectious disease epidemic should be designed in ways that makes it flexible enough to address emerging urgent community needs of decreasing mortality and morbidity.

Also, community members opined that community engagement should not be precluded from any clinical trial to be conducted in West Africa during an infectious disease epidemic.

The engagement helps to increase the validity of research; improve research measures, interpretations, and knowledge translation and dissemination; and provide a platform for vulnerable and excluded communities to be included in decision-making about the research.Doing so can facilitate research and community ownership of the research; and stimulate interest as members accept the community response as their own home-grown efforts/contributions to address the peculiar health-related challenges affecting members of the community.

There is no presumptive justification for the exclusion of communities in the design, implementation and monitoring of clinical trials conducted during an infectious disease epidemic outbreak. Engagement models that facilitate collaboration rather than partnership between researchers and the community during epidemics; and fast-track context specific best practices, are appropriate.