by Antonio Vecchio, SRI Community and Consumer Engagement Manager

As consumers, we play a vital role in ensuring that research outcomes are driven by our needs and experiences of living with a spinal cord injury (SCI). After all, the purpose of SCI research is to enhance our quality of life. 

Research conducted without our input won’t have the same impact as one truly reflecting our community goals. Whether it be curative, clinical, social, psychological or any other form of research it all benefits from our perspective. 

So, what can we do to ensure that research outcomes play a role in our lives? 

The most significant way we do that is by ensuring that researchers incorporate our perspective into their work. As people with lived experience, whether living with a spinal cord injury or even as a family member, we have a unique perspective on what it is to live with a spinal cord injury and the challenges that it entails. Sharing this experience with researchers in the studies ensures that the outcomes reflect real-life experiences. 

As consumers, we can be involved in studies as research participants. This involvement may be through involvement in clinical trials, but this is not the only way to have an influence. Other forms of influence include participating in surveys, interviews or focus groups. 

Although we may not think that this kind of participation is as beneficial as clinical trials, many clinical trials are shaped by information gathered from these. In many cases, large-scale trials may fail unless researchers have adequate evidence based on surveys and interviews. 

We also play an essential role in ensuring that those around us with access to research findings are up to date with the latest practices. For example, many of us see doctors, physiotherapists, occupational therapists, and other allied health workers. As consumers, we can influence their practice by continually asking them whether the practices they are recommending are up to date. 

Through asking questions like ‘Is this backed by research?’ And even in some cases asking to see the research behind their practices, you can continuously challenge them to ensure they are up-to-date. 
Overall, our role as consumers is to continually engage in research in as many ways as possible. Through that engagement, we can drive research outcomes that benefit our community. To hear about opportunities to participate in research, sign up to our mailing list.

  • July 11, 2023

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