An international group of experts in community engagement for health research has identified urgent measures to foster involvement of local communities in emergency research, such as the Ebola outbreak in Democratic Republic of Congo.
The workshop was held in Dakar, Senegal from 17-18 March and was a collaboration between four partners: the Nuffield Council on Bioethics; the African coaLition for Epidemic Research, Response and Training (ALERRT) consortium; the Institute for Health Research, Epidemiological Surveillance and Training (IRESSEF) in Dakar, Senegal; and the Wellcome Centre for Ethics and Humanities (WEH) at Oxford University.
It brought together experts from survivor, policy, research, and implementing organisations with experience of conducting community engagement in research during humanitarian crises. Although many of the experiences cited related to the recent and current Ebola outbreaks in West Africa and the Democratic Republic of Congo, the relevance of discussions extended beyond Ebola.
The overall messages that emerged from the workshop are that that research will not be possible unless a trusting relationship between researchers and potential participants can be developed, and the intrinsic value of community engagement in the context of research lies in its contribution to supporting a mutually respectful partnership between researchers and communities. Accordingly, effective and respectful engagement starts from a recognition of the experiences of people affected by the emergency, and the history associated with those experiences, and it should actively involve affected populations from the beginning and throughout the course of the research endeavour, as a two-way process contributing to the design, conduct, and outcomes of research.
Specific ideas for areas of action that emerged from the workshop included:
For funders of research
- Research funders around the world should routinely expect to see plans for community engagement in funding proposals, and recognise the need for flexibility in research involvement that is guided by reality on the ground.
- Budgets for community engagement need to cover the full costs of conducting engagement activities (including reimbursement of costs incurred by community members by taking part and appropriate refreshments) – not just the staff costs of the engagement practitioners.
For research ethics committees
- Committees should strongly encourage community engagement, beginning as early as possible in the development process and drawing on the expertise of survivor or patient groups where these exist.
- Research teams need to invest in communications training for all staff involved in a trial, recognising that engagement is a shared endeavour.
- Feedback to participants about what a study has learned should routinely be provided
For media organisations
- Local and national media organisations, researchers and patient / survivor groups should collaborate to increase journalists’ awareness of science, and help avoid media communication contributing to panic during an emergency.
For national governments
- National governments have a responsibility, under the International Health Regulations (IHR), to strengthen their emergency preparedness. This responsibility should be seen as including strengthening academic capacity, particularly in social science, to support the development of national /regional expertise in future.
- National governments need to embed community engagement practices in local health systems, for example through community health promotion workers, so that valuable work done during emergencies lasts beyond the lifetime of the specific research project.
Find out more about the Nuffield Council on Bioethics inquiry on research in global health emergencies.