Developing an integrated framework to promote community participation in health systems with special reference to Uganda

Summary: Despite all global efforts to advance community participation as an important component of the right to health, forty years after the international conference and Alma-Ata Declaration, an assessment of global health policies still notes that from all of the Declaration’s key principles, community participation has failed to become firmly rooted. One of the plausible reasons why community participation has failed to take root is the common rhetoric in support of community participation, while masking deep divisions about the concept and the practice. This thesis investigates the central research question ‘How can community participation be promoted in the context of Uganda’s health system given its historical and political situation?’ The thesis takes a multidisciplinary approach using both normative and empirical designs including qualitative case studies and a participatory action research (PAR) and doctrinal legal research. The findings of this thesis are presented in five publications which suggest that • First, situating community participation as a human rights concept provides community participation with a firm normative foundation under the standards established by international human rights law and other rules of international law that have been developed to support its application towards the improvement of the lives of vulnerable groups like the elderly and persons with disability. • Secondly, history has been critical in shaping community participation as a practice and government policy with regards to health. As such, decolonizing the historical legacy, both in terms of the letter of the law and legal practices, is an important step in ensuring that community participation is supported and enhanced in public health practice. • Thirdly, when community participation is contextually enabled, it is an important underlying value of realising the right to health and social justice in health systems. This provides a base upon which civil society groups can rally around to push for people’s power beyond health services to improve social determinants of health that are a critical component in improving health outcomes. • Fourth, community participation in health systems through HUMCs ought to be grounded in the principles of deliberative democracy. The core of this is authentic deliberation and consensus decision-making, which could happen in both direct and representative democracies, giving rise to the notions of populist and elitist deliberative democracy, respectively. • Lastly, the harm reduction model provides a pragmatic approach that could bring end users at the table of decision making. By bringing the end users at the table of decision making through the harm reduction approach, there is a unique opportunity to bridge gaps in the current efforts towards ensuring community participation. The study concludes that it is possible to create a three-way relationship in which the three approaches (democracy, human rights and harm reduction) are combined in a mutually reinforcing manner. At the end of the study, a normative framework for community participation through Health Unit Management Committees is proposed as a standard that could be adopted for ensuring community participation grounded in the theories of human rights, democratic governance and harm reduction