Epidemiological research: Science and community participation

Community participatory research holds much promise in strengthening the validity of epidemiological research, and has recently emerged as an innovative strategy to address the limitations of traditional survey research methods. The involvement of community members has been crucial in the design and implementation of research investigating illnesses that are highly stigmatized and when investigating at-risk populations that cannot be reached using traditional recruitment methods. Community participatory research also has the potential to promote collaboration between researchers and community members, and to address the agendas, political motivations, and goals of each group. This chapter provides a discussion of the issues of community involvement and participation in epidemiological research. These concepts are illustrated in a case study describing a research study investigating the prevalence of a controversial illness, chronic fatigue syndrome.