What researchers think of involving consumers in health research

Involving consumers in research enhances its quality and appropriateness, and is required within many research funding schemes. While the rationale for consumer involvement is understood, its implementation is unclear. The researcher investigated views of a group of Australia's leading researchers (n=38) about the role of consumers in their research using a brief survey administered at the Australia National Health and Medical Research (NHMRC) Translation Conference in 2014. Interpretive content analysis was used for data analysis. Respondents noted the importance of consumer involvement in the planning and design of research, to ensure its relevance to the community as end-users of research outcomes. Therefore, consumers were seen as central to research translation by the respondents. Many respondents perceived empathy for the experiences of others as a fundamental researcher skill. Despite strong acknowledgement of the benefits of consumer involvement in research, gaps exist between the rhetoric and practice of consumer involvement beyond consultative roles. Power over decisions made about research processes and ownership of research are continuing barriers to greater consumer involvement in research. Structural changes to how research is funded, evaluated and reported provide a means of addressing these gaps. NHMRC leadership is needed to promote these changes.