Abstract
ObjectiveTo collaborate with consumer and community representatives in the Alcohol and Pregnancy Project from 2006-2008 http://www.ichr.uwa.edu.au/alcoholandpregnancy and evaluate researchers' and consumer and community representatives' perceptions of the process, context and impact of consumer and community participation in the project.MethodsWe formed two reference groups and sought consumer and community representatives' perspectives on all aspects of the project over a three year period. We developed an evaluation framework and asked consumer and community representatives and researchers to complete a self-administered questionnaire at the end of the project.ResultsFifteen researchers (93.8%) and seven (53.8%) consumer and community representatives completed a questionnaire. Most consumer and community representatives agreed that the process and context measures of their participation had been achieved. Both researchers and consumer and community representatives identified areas for improvement and offered suggestions how these could be improved for future research. Researchers thought consumer and community participation contributed to project outputs and outcomes by enhancing scientific and ethical standards, providing legitimacy and authority, and increasing the project's credibility and participation. They saw it was fundamental to the research process and acknowledged consumer and community representatives for their excellent contribution. Consumer and community representatives were able to directly influence decisions about the research. They thought that consumer and community participation had significant influence on the success of project outputs and outcomes.ConclusionsConsumer and community participation is an essential component of good research practice and contributed to the Alcohol and Pregnancy Project by enhancing research processes, outputs and outcomes, and this participation was valued by community and consumer representatives and researchers. The National Health and Medical Research Council in Australia expects researchers to work in partnership and involve consumer and community representatives in health and medical research, and to evaluate community and consumer participation. It is important to demonstrate whether consumer and community participation makes a difference to health and medical research.
Highlights
The World Health Organization stated in 1978 in the Declaration of Alma-Ata that “people have the right and duty to participate individually and collectively in the planning and implementation of their health care [1]“
We have described our partnership with consumer and community representatives (CCRs) in health and medical research and an evaluation that addressed the process, context and impact of community participation (CCP)
Researchers thought CCP contributed to project outcomes by enhancing scientific and ethical standards, providing legitimacy and authority, and increasing the project’s credibility and participation. They saw it was fundamental to the research process and acknowledged CCRs for their excellent contribution
Summary
The World Health Organization stated in 1978 in the Declaration of Alma-Ata that “people have the right and duty to participate individually and collectively in the planning and implementation of their health care [1]“. In health and medical research, consumer participation is considered morally [10,11,12] and ethically correct practice [2]. Consumer participation in health and medical research is often a policy directive [2] and a requirement of funding organisations [20] but should be practised for these reasons. Rather, it is an essential component of good research practice [11,16].
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