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.
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Acknowledgements
We thank the following people: Ms Emma Peleg and Associate Professor Doug Brown AM, Spinal Research Institute, Australia, for input during the policy development process, and reviewing and commenting on this article; Dr Linda Barclay, Spinal Research Institute, Australia, for reviewing and editing the manuscript; and Mr John Chernesky, Praxis Spinal Cord Institute, Canada, for providing a guiding hand as we launched our consumer engagement work in 2019/2020.
Funding
Funding for the SRI’s Consumer Engagement Program was provided by the Transport Accident Commission and IOOF Foundation.
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KH was responsible for seeking out and reviewing publicly available consumer remuneration resources, writing the policy document, and writing the manuscript. AV was responsible for seeking out and reviewing publicly available consumer remuneration resources, engaging with the VCCC, reviewing the policy document, and reviewing, editing, and commenting on the manuscript.
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Hendry, K.L., Vecchio, A. Involving people with lived experience of spinal cord injury in research: a policy for consumer remuneration. Spinal Cord 61, 285–287 (2023). https://doi.org/10.1038/s41393-023-00888-0
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DOI: https://doi.org/10.1038/s41393-023-00888-0
