Consumer Engagement Program
Consumers: people with lived experience of spinal cord injury, their carers, family and friends.
Our goal is to actively involve consumers in research, to benefit its quality and direction, and improve health outcomes for people with spinal cord injury. Our Consumer Engagement Program puts people with lived experience at the forefront of research, by supporting them to co-design and co-deliver research that is relevant to the needs and priorities of the spinal cord injury community.
This program is being developed with support from the IOOF Foundation.
Watch our series of short videos that talk about the importance of research co-design and co-delivery, and why we need to connect researchers to people with lived experience of spinal cord injury.
Intro Video
Video 2
Video 3
Video 4
Video production by Empower Productions.
Below are a number of resources from Australian and international organisations, to help guide consumers and researchers as they engage throughout the research process. Some of the resources are generic and others are specific to spinal cord injury research.
More resources will be added as we develop our program.
How to Engage People with Lived Experience in SCI Research
Engaging PLEx (People with Lived Experience)
Consumer and Community Participation in Health and Medical Research
How to get involved in research and Resources for researchers about public involvement in research
Consumer and Community Involvement
Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement
People with lived experience of SCI (PLEx) can register to any of these SCI dedicated trial finders:
SCI Trials
SCITRIALS.ORG is a new matching tool for clinical trials, which was created for the spinal cord injury community by the spinal cord injury community to connect the scientific community and people living with SCI.
It was created to address some of the challenges users were experiencing on existing clinical trial sites, by providing information on trials specific to SCI, and are filtered to contain studies from legitimate universities, research centers, and hospitals. Additionally, the site allows users to save a search unique to their preferences and then receive email updates when relevant trials in their area come online.
To access the continually updated information in the site, simply sign up to use the free platform at SCITRIALS.ORG – we hope to see the majority of our community adopt the site, and encourage users to spread the news about this new tool throughout their networks also.
SCITRIALS.ORG is a joint initiative of the North American Spinal Cord Injury Consortium (NASCIC) and endParalysis.org – with development provided by fuelService.org
SCI Trials Finder
The goal of the SCITrialsFinder.net website is to allow individuals with spinal cord injury (SCI), their families and health care professionals to get common language information about clinical trials as developed by experienced clinical investigators (these are called curations or curated trials). Currently reviewed curating trials are looking for participants for studies of interventions targeting improvement of neurological and related functional outcomes, currently underway in North America, Europe and Australia.
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