The Health Consumers’ Council is strongly committed to the active participation of consumers, carers and community members at all stages and every level of health and medical research.

‘As the end users of health and medical research, consumers can provide valuable input to decisions about research policies and practices. If such research is to continue to provide high quality outcomes, it is important that consumer and community involvement in research and its ongoing development is facilitated. This includes participation by consumers as partners in the development of research goals, questions, strategies, methodologies and information dissemination. Research methods and results that are open to informed public scrutiny, and debate also help to ensure the integrity of research and accountability to the community for the quality of the research. Consumer and community participation in research brings with it responsibilities for consumers, community members and researchers – the responsibility to be respectful of each other’s knowledge, to share information with each other about research issues, and to be open about potential interests in the outcomes of research (such as a consumer’s individual health or the researcher’s financial benefits from a funder). The shared responsibility of consumers, community members and researchers is to ensure that ethical requirements are met and that there is value to the research.’

National Health and Medical Research Council Consumer and Community Participation Resource December 2004 Adopted: February 2011