Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation

To collaborate with consumer and community representatives in the Alcohol and Pregnancy Project from 2006-2008 http://​www.​ichr.​uwa.​edu.​au/​alcoholandpregna​ncy and evaluate researchers' and consumer and community representatives' perceptions of the process, context and impact of consumer and community participation in the project.

We 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.

Fifteen 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.