May 2024 ELSI Friday Forum: Patients as Partners in Sickle Cell Disease Research in Africa: Ethos, Challenges and Lessons Learned

Health research is undergoing a gradual but transformative shift, where patients and study communities no longer want to be passive participants in health research but active collaborators. However, the notion of patients as partners in health research in Africa raises unique challenges spanning both conceptualization and implementation. Drawing on recent community-engaged efforts to develop a framework for equitable engagement with sickle cell disease patient groups and researchers in Africa, this webinar explored the scientific, social and ethical rationales for this initiative, share the challenges that arise, and offer best practices for implementing a productive patient-researcher relationship in Africa.

Moderator: Tabia Henry Akintobi, PhD, MPH
Panelists:

• Ms Arafa Salim Said, Founder, Sickle Cell Disease Patients Community of Tanzania
• Ms Nabeelah Peerbhai, Executive Director, Sickle South Africa Support Group 
• Ms Nchangwi Syntia Munung, Bioethics Researcher, University of Cape Town

Suggested citation:

Said, A. S., Peerbhai, N., Munung, N. S., & Akintobi, T. H. (2024, May 10). Patients as partners in sickle cell disease research in Africa: Ethos, challenges and lessons learned [Video]. The Center for ELSI Resources and Analysis (CERA). https://elsihub.org/video/may-2024-elsi-friday-forum-patients-partners-sickle-cell-disease-research-africa-ethos