Strengthening the ethics of clinical research with and for limited literacy participants in Ebola affected countries: a toolbox

Dr. Elysée Nouvet
Assistant Professor, Global Health
Western University, London, Ontario, Canada
Canada Lead
Email: enouvet@uwo.ca
Tel: 001-905-512-2620
Dr. Mandy Kader Konde
President, CEFORPAG
Conakry, Guinea
Africa Lead
Email: kaderkonde@gmail.com
Tel: 224 628 01 4292 / 657 27 5654

Co-Investigators:

Prof. Alpha A. Diallo (Université de Guinée, Guinea); Prof. Phaedra Henley (University of Global Health Equity, Rwanda); Prof. Matthew Hunt (McGill University, Montreal); Prof. Jean-Jacques Muyembe (Kinshasa University Medical School, Democratic Republic of Congo); Prof. K K Kayembe (Kinshasa University, Democratic Republic of Congo); Prof. John Pringle (McGill University, Canada); Prof. Lisa Schwartz (McMaster University, Canada)

Ebola Virus Disease (EVD) research with human participants in EVD-affected countries is a certainty into the foreseeable future. Many of those recruited to future EVD studies will be adults with limited literacy and no prior exposure to research. Ethical and effective research during and in the aftermath of EVD outbreaks depends on community consultation, participation, and trust. It is imperative to identify strategies to support the ability of those approached for research participation to evaluate their options and make an informed choice.

This two-year project aims to:

(i) Deepen understanding of when and why communications about research studies or processes may not be well understood or heard as intended amongst potential research participants

(ii) Develop, pilot, and disseminate, in partnership with African research staff and lay participants, the first ever open access primer on research and research participation developed with and geared to limited literacy adults in sub-Saharan Africa

(iii) Ultimately, support the ethical conduct of research in EVD-affected contexts, by creating a set of materials researchers, ethicists, regulators, civil society leaders, and individual participants can consult to better understand, discuss, prepare for, and navigate research in EVD-affected countries

This project adopts a participatory action research approach (PAR). As such, EVD affected stakeholders have been involved from the outset in defining research questions, methods, and objectives.