Abstract
Community and public participation and involvement is an underpinning principle of primary health care, an essential component of a social justice-orientated approach to health care and a vehicle to improving health outcomes for patients, public and communities. However, influenced by history and context, there are intrinsic issues surrounding power imbalance and other barriers to partnerships between communities, public, policy makers and researchers. It is important to acknowledge these issues, and through doing so share experiences and learn from those working within very different settings.
In South Africa, community participation is seen as a route to decolonisation. It is also integral to the core functions of South African Higher Education Institutes, alongside teaching and research. In the UK, there has also been a history of participation and involvement as part of a social rights movement, but notably public involvement has become embedded in publicly funded health research as a policy imperative.
In this paper, we draw on our respective programmes of work in public and community participation and involvement. These include a South African community engagement project to reduce teenage pregnancy and HIV infection working through a partnership between teachers, students and university academics, and a national evaluation in England of public involvement in applied health research. We begin by highlighting the lack of clarity and terms used interchangeably to describe participation, engagement and involvement. Frameworks for partnership working with relevance to South Africa and the UK are then analysed, suggesting key themes of relationships, working together, and evaluation and monitoring. The South African project and examples of public involvement in English primary and community care research are examined through these themes. We conclude the paper by mapping out common enablers and barriers to partnership working within these very different contexts.
Developing Ethical Practices for Public Health Research Data Sharing in South Africa
