Participants’ Research Ethics Toolbox (PRET) for the mpox response
Project overview
This project involves training research stakeholders in the Democratic Republic of Congo (DRC) on use of the Participants’ Research Ethics Toolbox (PRET), to support potential research participants’ understanding and assertion of their rights in the current Mpox emergency and beyond.
Countries
Democratic Republic of Congo
Organisations
Western University;
Partners
National Health Research Ethics Committee (DRC), Congo Network of Religious Leaders living or personally affected by HIV and AIDS (CONERELA+), Centre for Applied Ethics, University of Kinsasha, Humanitarian Health Ethics Group, World Health Organization, Fondation Santé et Développement Durable (Guinea)
Area of funding
Humanitarian Research
Grant amount
£44,972
Start date
01
January
2025
End date
30
September
2025
Project length (in months)
9 months
Funding calls
Focus areas
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Topics
Communicable diseases
Ethics
Mpox
Status
Live
Project solution
This project offers [specific solution or intervention] to tackle [challenge]. By implementing [strategies, tools, or innovations], the project aims to achieve [desired outcomes]. The approach is designed to [specific actions or methods] to bring about meaningful change in [community, region, or issue area].
Expected outcomes
This project aims to achieve [specific outcomes], such as [measurable results, improvements, or changes]. The expected impact includes [benefits to the target community, advancements in research or innovation, or long-term effects]. By the end of the project, we anticipate [specific changes or milestones] that will contribute to [broader goals or objectives].
Elysée Nouvet
Western University
It is in discussing negative experiences of Ebola research with Ebola survivors that the idea for this Toolbox emerged. This is a project about strengthening the conduct of ethical research in public health emergencies, with a focus on equipping members of affected populations with practical understanding and strategies to navigate invitations to research and assert their rights as research participants.
Purpose
This project aims to build sustainable capacity for ethical research conduct in the Democratic Republic of Congo and beyond by training community leaders, research stakeholders, and ethics committee members on the Participants’ Research Ethics Toolbox (PRET). Developed on the request of and in collaboration with Ebola survivor groups following the 2014–2016 Ebola outbreak, the open access PRET that includes six videos, posters, and a series of discussion starters and activities, is designed to support limited literacy adults’ comprehension of research, consent considerations, and participant rights in general.
Uptake activities include:
- Two “Train-the-Trainer” workshops in DRC with 40 community leaders.
- In-person orientation to the PRET for 100 researchers and research governance stakeholders in DRC.
- Conference and virtual dissemination (in collaboration with WHO and the DRC Centre in Applied Ethics) aimed at socialising the PRET within African public health emergency research networks.
These activities will equip community leaders to lead discussions and workshops on research participants’ rights in their communities. They will also build awareness and accountability amongst other research stakeholders of actionable strategies for meaningful community engagement in mpox affected DRC and beyond.
Expected outcomes
- Deliver two “Train-the-Trainer” workshops in DRC, equipping 40 community leaders to deliver PRET-based training in their own contexts.
- Increase participant knowledge and understanding of research rights, as measured by post-training feedback.
- Strengthen capacity of National Health Research Ethics Committee members to integrate PRET into policy and practice.
- Facilitate virtual dissemination sessions to raise awareness of PRET among African public health emergency research stakeholders.
- Promote adoption of PRET across mpox and other emergent infectious disease research in Africa, enhancing equitable and participatory research practices.
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Project delivery & updates
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