“Community engagement plays an important role in protecting research participants during clinical trials as well as ensuring that research is inclusive and responsive to health challenges,” said Nomampondo Barnabas, Community Liaison Manager at the Clinical HIV Research Unit (CHRU), who was speaking at the World Medical Association's (WMA) regional Africa meeting held in Johannesburg.
The meeting was organised by the WMA, the American Medical Association and the South African Medical Association to provide a platform for organisations from the African region to give feedback on the current draft of the WMA’s Declaration of Helsinki. The declaration, a cornerstone of medical ethics, is undergoing revisions.
Barnabas says that while the ethical principles and protections outlined in the declaration have underpinned research at CHRU since 2001, she welcomed the opportunity to contribute to a revised version so that the role of communities in identifying and protecting study participants can be better recognised.
“Voluntary informed consent needs to be fully embraced by a community, not just understood by individual study participants,” said Barnabas. “Clinical studies need to be more inclusive of diverse populations. Evaluation of studies is required throughout a trial to ensure that scientific priorities remain aligned with community needs throughout.”
Research with the community, not for the community
Drawing from her extensive experience in community engagement and participant recruitment at CHRU, Barnabas stressed the importance of shifting the paradigm from doing research for the community to doing research with the community. “Communities provide crucial insights into local dynamics and public health challenges and play a central role in scientific research,” she said.
Comprehensive stakeholder engagement with global, South African and local players provides the context for effective community engagement with community-based organisations, community and traditional leaders, and study participants. These stakeholders include policymakers, sponsors, research networks, non-profit organisations, healthcare departments and facilities.
CHRU's best practices in community engagement and recruitment strategies were also shared by Barnabas. CHRU's meticulous approach to recruitment and retention was outlined, emphasising the role of Community Advisory Boards (CABs) as vital links between clinical research sites and local communities.
“Our researchers are very involved with participant communities as well as with individual trial participants under their care. Our scientists enjoy strong relationships with communities surrounding our four clinical research sites across South Africa. They invest time in building understanding about studies amongst communities and sharing research results.”
The Declaration of Helsinki, developed by the WMA in 1964, sets forth ethical principles for human experimentation. The ongoing revision process, initiated in 2022, underscores the WMA's commitment to upholding the highest ethical standards in medical research.