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

Health Research Policy and Systems

Carol Bower¹  Elizabeth J Elliott⁵  Anne E Bartu²  Nadine Henley⁴  Anne E McKenzie³  Kathryn E France¹  Heather A D'Antoine¹  Janet M Payne¹ 

[1] Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Subiaco, Western Australia;School of Nursing and Midwifery, Curtin Health Innovation Research Institute, Curtin University of Technology, Bentley, Western Australia;School of Population Health, The University of Western Australia, Crawley, Western Australia;Centre for Applied Social Marketing Research, Edith Cowan University, Joondalup, Western Australia;Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia

关键词: impact;    alcohol;    Fetal Alcohol Spectrum Disorder;    evaluation;    health and medical research;    Consumer and community participation;   

Others  :  810166
DOI  :  10.1186/1478-4505-9-18

 received in 2010-12-20, accepted in 2011-05-14,  发布年份 2011

【 摘 要 】

Objective

To collaborate with consumer and community representatives in the Alcohol and Pregnancy Project from 2006-2008 http://www.ichr.uwa.edu.au/alcoholandpregnancy 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.

【 授权许可】

   
2011 Payne et al; licensee BioMed Central Ltd.

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