Early and ongoing consumer* input throughout the research process is necessary to improve the number of spinal cord clinical trials with meaningful outcomes that are able to be translated into clinical practice.
Local and global momentum is building to engage meaningfully and effectively with consumers in the research process. Placing greater value on the lived experience to improve policy, service delivery and research to achieve more relevant outcomes, is needed to affect this paradigm shift.

Consumer engagement can enhance the integrity of research and has been shown to increase study enrolment rates, aid in securing funding, and improve study design, protocols and choice of relevant outcome measures1. Furthermore, involving consumers as partners can legitimately value and recognize their knowledge and experience, and has the potential to leave researchers feeling more positive and rewarded2, 3.

Consumers can be engaged at a variety of levels at all points throughout the research cycle, as partners, experts, advisors, advocates or through personal engagement4. Opportunities that enable consumers to develop expertise in areas of interest, while matching their skills to a role’s requirements, are a necessary component of effective consumer engagement1.

Objectives
● Recognise the different types of consumer engagement and understand the requirements for engaging consumers as equal partners
● Learn how to take the next steps in engaging those with lived experience in the research process
● Identify tools and programs needed to facilitate and support the connection of consumers with the research community throughout the research process

Material is suitable for participants of all levels with the target audience of those with lived experience of SCI, researchers, allied health, clinicians, scientists and anyone interested in engaging consumers throughout the research process.

Prior learning, experience or qualifications are not essential. Pre-readings are recommended for optimal participation and can be found the SCoRH website [www.scorh.org].


Chair - Dr Kim Anderson-Erisman, President, North American SCI Consortium (NASCIC)

Kylie Cochrane, Board Director, International Association for Public Participation (IAP2) Australia, (zoom conference)
o Overview of consumer engagement and its’ value
o Obstacles and lessons learnt

John Chernesky, Consumer Engagement Lead, Rick Hansen Institute (RHI)
o Guiding principles for successful consumer engagement in SCI research

Dr Johnny Bourke, Disability and PLEx Research Lead, Burwood Academy of Independent Living (BAIL)
o Consumer engagement programs and tools

Development session
o Knowledge exchange with audience, comments and discussion


Sponsoring Organisations
NASCIC, RHI, BAIL, SRI

*Consumer: individuals with lived experience of SCI, their family and friends

1Domeq et al. 2014 http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-89
2Cancer Australia and Cancer Voices Australia, 2011. National Framework for Consumer Involvement in Cancer Control. Cancer Australia. https://canceraustralia.gov.au/sites/default/files/publications/national_consumer_framework_web_504af020f2184.pdf
3NHS Institute (National Health Service Institute for Innovation and Improvement). Using design to innovate. 2011 
29 May 2011; Available from:http://www.institute.nhs.uk/innovation/innovation/using_design_to_innovate.html 

4Bourke, J. A., Nunnerley, J. L., Snell, D. L., & Sinnott, K. A. (2019). The Burwood Academy: Incorporating the principles of the Independent Living paradigm into rehabilitation research. International Journal of Human Rights in Healthcare (in press)