Beyond clinical trials and narratives: a participatory action research with cancer patient self-help groups.

Abstract

The self-help movement in Hong Kong has been gradually gaining its momentum in recent years. The primary purpose of the research was to give voice to the experiences and views of patients towards cancer care and to influence healthcare providers and policy makers to act on patients' agendas. Self-help groups and their members are mobilized through the research activities of focus groups, interviews and a patient forum to specify and act on their needs. This article describes the project and the participatory action research (PAR) strategies in the mobilization of, and collaboration with, patient groups in research design, data analysis, and dissemination of findings. The implications on healthcare practice, particularly within an era of reform and restructuring of the healthcare system, are discussed.