Consumer Engagement
From identifying priorities to participating in studies and validating findings, people with SCI and their friends, families, and caregivers are critical to ensuring that research moves forward. Consumer engagement in research is an emerging field that is developing rapidly with funders, research organizations, and health care providers recognizing that engaging consumers in their work improves outcomes.
In support of this need, RHI is fostering partnerships and implementing activities to provide information and tools to SCI consumers that empower them to make informed decisions about their health, improve research outcomes, and reduce the severity of SCI secondary health complications. One initiative in development is the Go-To Resource (GTR) – an evidence-based resource, providing up-to-date information about treatments to consumers. The Spinal Cord Injury Research Evidence (SCIRE) team is developing content for the GTR. The SCIRE team adopted a participatory research method, which involved SCI consumers to ensure that the final product provides the kind of information that is relevant to them and in formats that are accessible, comprehensible, and useful.