What is consumer and community involvement in research?

Consumers are people who have lived experience of a health issue. They might receive health care or advice, or otherwise use health care services. They include patients, their friends, families, carers and members of the general public. Consumers can also be people who represent the views and interests of a consumer organisation, a community or a wider constituency. (1)

Consumer and community involvement is where consumers and community representatives actively work with researchers and research organisations to help shape decisions about health research priorities, policy, and practice. (2)

The goal of health and medical research is to improve human health and is largely supported through public funds. Researchers have a moral obligation to ensure that studies are focused on consumer needs and priorities, and that as the end-user of the research, consumer preferences are heard.

Consumer and community involvement is different to research participation. Consumers guide and provide feedback to researchers to shape how the research is conducted, while participants provide data and information that is studied as part of a research project.

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