The experiences affecting sub-Saharan African patients' engagement in antiretroviral clinical trials: an exploratory participative action research study

Gertrude Othieno discussed community participation from an African perspective. She presented an overview of an ongoing study, (undertaken with Kevin Corbett at St. George’s Hospital, South London), investigating the experiences of Africans involved in anti-retroviral trials. The study sought to enhance the enrolment of Africans and to increase user consultation. Using an action research methodology the researchers employed several cycles of activities. The research process involved cycles of planning, acting, observing and reflecting, embedded in the overall process of the different communities engaging in the study.
The researchers put together a Research Advisory Group (RAG) comprised of patients, academic researchers, doctors, nurses and other health practitioner to assist in achieving study aims and objectives. The advisory group slowly developed into a reference group. The RAG will eventually become a user forum which will continue after 18 month research study has finished. The study strived to be as democratic as possible with no one individual having absolute power. However, it was not a classic “bottom up” model, having greatly facilitated by researchers and clinicians.
The researchers came across many challenges, from misconceptions about the role of the RAG to clinicians who did not fully embrace the exploratory research approach.
About Gertude Othieno
Gertrude Othieno is Director of African Culture Promotions (ACP) a voluntary organisation that provides specialist community-based HIV prevention services to African communities. She is also Research Assistant currently undertaking research into the service involvement of patients/users at St George's Healthcare NHS Trust. Gertrude is a representative of South West London African HIV Forum on the African HIV Policy Network (AHPN). She is Editor of African Cultural and Social Structures, a handbook that provides useful information to the health, social care and voluntary sectors.
About Kevin Corbett
Dr Kevin Corbett is a senior lecturer in the Faculty of Health and Social Care Sciences at St. George's Hospital Medical School where he teaches on undergraduate and postgraduate programmes. Kevin has a PhD in medical sociology and is undertaking research into the service involvement of patients/users.