Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa
2023
Nombuyiselo Mofokeng | Tongai G. Maponga | Marije van Schalkwyk | Susan Hugo | Molefi Daniel Morobadi | Sabeehah Vawda | Leane Badenhorst | Cloete van Vuuren | Christo van Rensburg | Wolfgang Preiser | Jantjie Taljaard | Su Wang | Veronica Miller | Dan Wu | Joseph D. Tucker | Janet Seeley | Dominique Goedhals | Philippa C. Matthews
High profile international goals have been set for the elimination of hepatitis B virus (HBV) infection as a public health threat by the year 2030. Developing and expanding equitable, accessible translational HBV research programmes that represent real-world populations are therefore an urgent priority for clinical and academic communities. We present experiences and insights by an expert interdisciplinary group focusing on barriers that impede adults living with HBV infection from participating in clinical studies. Our viewpoint describes barriers we have identified through working in a variety of settings across South Africa, including lack of education and awareness, experiences of stigma and discrimination, challenges for governance and data management, and a burden of complex morbidity. Through identifying these challenges, we propose solutions and interventions, highlight new approaches, and provide a framework for future research.
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