SCI-Powered Network: Community-Driven Health Information Framework
A comprehensive three-part initiative addressing the information gap experienced by 83% of people living with spinal cord injuries. Through community surveys, quality standards, and AI-powered tools, the SCI-Powered Network creates a trusted framework for health information dissemination.
The Challenge We're Addressing
Despite the breadth of resources currently available, people living with SCI still feel information-deprived and have difficulty finding trustworthy, credible, practical, and accessible information. From a one-year series of roundtable discussions with SCI advocacy and resource organizations, NASCIC uncovered this real-world experience as well as the need to harmonize information across groups to identify what can be trusted quickly and efficiently.
The SCI-Powered Network represents a community-driven response to this issue, bringing together the lived experience of people with SCI, healthcare professionals, and technology experts to create a comprehensive solution.
83% have difficulty accessing SCI health information
38% experience frequent difficulty finding resources
64% struggle to identify credible sources
Our Three-Part Solution
The SCI-Powered Network consists of three interconnected components that work together to address the information gap. Each element was developed through extensive community engagement and builds upon the others to create a comprehensive framework.
Information Needs Community Survey
A comprehensive survey of 448 qualified respondents understanding how people living with SCI access and evaluate health information.
- Identified trusted information sources
- Revealed access barriers and challenges
- Mapped information-seeking behaviors
- Documented telehealth experiences
SCI Seal of Approval
Development of criteria, attributes, and evaluation processes for trusted SCI health information to help identify credible resources.
- Four key evaluation attributes
- Scoring system and transparency
- Review panel composition
- Information categorization system
AI/LLM Learning Tools
Framework of categories, attributes, and resources to train AI systems for improved SCI health information dissemination.
- 64 health conditions catalogued
- Comprehensive categorization tags
- Treatment and specialist listings
- Community-validated resources
How The Three Parts Work Together
Survey identifies what people need
Seal ensures quality standards
AI Tools scale and evolve delivery
All three elements are interconnected and must be used together. The survey data informs what resources are needed, the Seal of Approval ensures quality, and AI tools enable scalable, evolving information delivery with human oversight.
Our Working Group
The SCI-Powered Network was developed by a diverse Working Group of 20 representatives from SCI advocacy and resource organizations across the US and Canada, ensuring community-driven solutions.
Moving Forward Together
Based on our comprehensive research and community engagement, we've identified key actions to improve SCI health information access:
Explore co-branding partnerships between organizations
Create on-demand information access methods
Advocate for continued telehealth availability
Implement the SCI Seal of Approval system
Train AI tools with continuous community input
Combine AI efficiency with human validation
Get Involved
For Individuals Living with SCI
Access trusted resources, participate in future surveys, and help shape the evolution of SCI health information.
Join Our CommunityFor Nonprofits
For non-profit organizations led by individuals with SCI or non-profit organizations led by family members of individuals with SCI.
Become A MemberIndustry
For any organization with an interest or activities related to people living with SCI, but not a meeting the requirements of a Principal member.
Become a Partner
