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

Payne, Janet M., D'Antoine, Heather, France, Kathryn E., McKenzie, Anne E., Henley, Nadine, Bartu, Anne E., Elliott, Elizabeth J. and Bower, Carol (2011). Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation. Health Research Policy and Systems,9(1):18-31.

Document type: Journal Article
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IRMA ID 75039815xPUB487
Title Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation
Author Payne, Janet M.
D'Antoine, Heather
France, Kathryn E.
McKenzie, Anne E.
Henley, Nadine
Bartu, Anne E.
Elliott, Elizabeth J.
Bower, Carol
Journal Name Health Research Policy and Systems
Publication Date 2011
Volume Number 9
Issue Number 1
ISSN 14784505   (check CDU catalogue open catalogue search in new window)
Start Page 18
End Page 31
Total Pages 14
Place of Publication United Kingdom
Publisher BioMed Central Ltd.
Abstract Objective: To collaborate with consumer and community representatives in the Alcohol and Pregnancy Project from 2006-2008 webcite and evaluate researchers' and consumer and community representatives' perceptions of the process, context and impact of consumer and community participation in the project.

Methods: 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.

Results: 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.

Conclusions: Consumer 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.
Keywords Consumer and community participation
health and medical research
Fetal Alcohol Spectrum Disorder
DOI   (check subscription with CDU E-Gateway service for CDU Staff and Students  check subscription with CDU E-Gateway in new window)

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