Ethics requirements for Consumer and Community Involvement in projects
In Australia, you do not need ethical approval to involve consumers and community members in research and healthcare improvement projects because data is not being collected from them. The people involved are working with you as members of your project team.
INVOLVE, the UK organisation overseeing public involvement in research, has stated:
Involving the public in the design and development of research does not generally raise any ethical concerns because they are not acting in the same way as research participants. Consumers are acting as advisers, providing valuable knowledge and expertise based on their experience of a health condition, and/or use of health/social care or public health services or in their role as a carer.
Although you don’t need to have ethical approval for consumer and community involvement in research, there are ethical considerations you should bear in mind. The resource below, developed by INVOLVE, provides clarity and guidance on public involvement in research and the requirements of health ethics committee review.
(If) you would like to seek some consumer input into the design of the study application, you’re not actually requesting recruitment of consumers into the research itself. Therefore, this is not something we would require ethics review of.