Involving people with lived experience of spinal cord injury in research: a policy for consumer remuneration.

Abstract

To ensure that research outcomes are relevant and meet the needs of the spinal cord jury (SCI) community, it is essential that people with lived experience of SCI ('consumers') are actively involved in all stages of the research process. One of the goals of the Spinal Research Institute (SRI) ( www.thesri.org ) is to facilitate this active engagement of consumers in research. In order to support consumer involvement, appropriate resources, including remuneration, need to be in place. This paper sets out the process undertaken by the SRI to develop a Policy for Consumer Remuneration. It addresses the rationale for creating a policy, the resources used and shares the model that defines the levels of consumer engagement and associated remuneration. The SRI Policy for Consumer Remuneration sets a standard for the SCI research field, which can serve as a model for Australia and as a template for other countries.