Involving the public through participatory visual research methods

Objectives To show how providing cameras to patients and community residents can be effective at involving the public in generating understanding of consumer, community, and health system problems and strengths. Background Health-care institutions and systems may seek to include consumer perspectives on health and health care yet be challenged to involve the most vulnerable sectors, be they persons with disabilities or persons with low socio-economic status living in societies where a top-down approach to policy is the norm. Methods Drawing on study examples using photo-elicitation and photovoice in Morocco and the United States, the authors explore issues of planning, data analysis, ethical concerns and action related to using participatory visual methods in different cultural and political contexts. Results Visual data generated by consumers can be surprising and can identify health system problems and strengths omitted from data gathered using other means. Statistical data may convince policy makers of the need to address a problem. Participant visual data may in turn encourage policy maker attention and action. Conclusion Health system decision making may be improved by having a broader range of data available. Participant-generated visual data may support data gathered using traditional methods, or provide a reality check when compared with data generated by organizations, researchers and policy makers. The two study examples model innovative ways to surface health and health-care issues as they relate to consumers' real lives and engage vulnerable groups in systems change, even in contexts where expressing opinions might be seen as a risky thing to do.