Advocacy can take many forms, from directing personal healthcare to raising awareness and funds for SCI causes to promoting policies that benefit the community. Research advocacy holds particularly transformative potential.
Research advocacy is the active collaboration between the SCI community and researchers or research institutions. This collaboration aims to ensure that the research conducted is not only scientifically sound but also directly relevant and beneficial to the people it aims to serve. “Consumer engagement,” “patient-oriented research,” and “community-based participatory research” integrate the voice of people with lived experience into research by engaging consumers to center research on what is important to them. In medical conditions such as Parkinson’s disease and breast cancer, people living with the condition have partnered with research/clinical entities, industry, funders, and regulatory agencies. These partnerships have had a meaningful impact on research, care, and policy. Historically, research projects have often overlooked the needs and perspectives of people with SCI—resulting in products and findings that fail to address real-world challenges. The SCI community has not engaged in research to the same degree despite a desire to do so. To rectify this, it is crucial for individuals with SCI to be involved in every stage of the research process, from design to dissemination. Dr. Kim Anderson-Erisman, a notable voice in the field, emphasizes the importance of including people with SCI in the research process. “Too many times in the past, things have been created from research without the end-user being included, and the product ends up being left on the wayside because it doesn’t meet the needs of the user,” she explains. By engaging the SCI community as active participants rather than passive subjects, research can be steered towards outcomes that genuinely enhance the quality of life for those affected.
Too many times in the past, things have been created from research without the end-user being included, and the product ends up being left on the wayside because it doesn’t meet the needs of the user.
– Dr. Kim Anderson-Erisman
One might think that being a research advocate requires scientific expertise, but that is not the case. The primary role of SCI research advocates is to represent the collective voice of the SCI community, ensuring that research addresses the most pressing questions and needs. Through their lived experiences and those of others in the community, advocates provide invaluable insights that help shape studies in a way that is both meaningful and practical.
There are various roles an SCI research advocate can assume. Some advocates serve on advisory boards or committees that guide research projects or decide on research funding. Others partner with researchers to design clinical trials that are both scientifically rigorous and safe and tailored to the needs of people living with SCI. Participating in focus groups to help design new treatments or educating the SCI community about clinical trials and research findings are other critical roles. In each of these capacities, advocates play a key role in bridging the gap between the scientific community and the people it seeks to serve.
Ultimately, research advocacy fosters “informed hope” within the SCI community. It is about ensuring that research leads to tangible improvements in the lives of people with SCI rather than just producing academic knowledge. By engaging with researchers, SCI advocates help create a future where research is not just conducted for the community but with the community, promoting informed hope.
The North American Spinal Cord Injury Consortium (NASCIC) offers a specialized course that delves into research advocacy, guiding participants on how to be part of the “informed hope” movement. The SCI Research Advocacy Course (SCI-RAC) is designed to empower individuals with SCI by teaching them how to collaborate effectively with researchers to ensure that research is not only conducted with the community’s needs in mind but also directly benefits those it aims to serve.
NASCIC now offers a SCI-RAC Lite version for those who may not have the time to complete the course in its entirety. We offer 4 bundles, each lasting approximately an hour, for those who can only commit to part of the course. These bundles highlight different areas of our course; everyone can find a bundle they are interested in. Individuals who choose to complete the entire course can join NASCIC’s graduate circle, a community to engage in advocacy work. One of the critical features of this graduate circle is a matchmaking program that connects those with lived
SCI experience who are eager to share their insights with researchers and clinicians, seeking advocates for their research projects.
If you want to learn more about research advocacy, we encourage you to enroll in the SCI Research Advocacy Course today. For more details, visit https://nascic.org/membership-checkout/
By: Nikoletta Erdelyi | Spring/Summer 2024
