SCI Seal of Approval: Specifications Document
A community-driven framework establishing criteria, attributes, and evaluation processes for trusted SCI health information. This specifications document outlines the development of an SCI Seal of Approval to help people living with spinal cord injuries identify credible, practical, and accessible health resources.
Introduction
Today, people living with SCI are inundated with information, some of which is helpful or accurate while others can be misleading or harmful. 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.
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.
Project Goal
Build a community-driven framework of credible and trustworthy spinal cord injury information through exchange and dissemination in an inclusive and engaged manner to serve stakeholders inside and outside the SCI community.
Objective One
Identification of high-priority information needs and daily challenges of living with spinal cord injury gathered through a needs assessment designed with diversity and under-served individuals in mind.
Objective Two
Conduct a landscape search to identify common characteristics of inclusive and trustworthy information and resources.
Key Deliverables
Provide a gap analysis between the high priority needs of spinal cord injury and the identified information and resources.
Development of metrics of SCI information and resources to create the SCI Powered Network seal of approval.
Create a design criteria report consisting of solutions definition, system characteristics, and key attributes needed for a community-driven structure.
Project Aims
Aim 1: Ranking System
Identify a ranking system of SCI health information, similar to a "good housekeeping" symbol for the SCI community.
Aim 2: Implementation Framework
Propose a framework to implement such a system with guidance on key elements, ranking criteria, review process, and identification for developing information dissemination tools.
Methodology
The efforts for this project were conducted with a diverse Working Group of representatives across the SCI community in the US and Canada. The final Working Group consisted of 20 members representing a wide range of advocacy and information resource organizations specifically for SCI.
| Name | Organization | Role |
|---|---|---|
| Reveca Torres | BackBones | Member |
| Kim Anderson | NASCIC | Member |
| Spring Hawes | Praxis Institute | Member |
| Lindsay Perlman | Paralyzed Veterans of America | Member |
| Kim Beer | Christopher & Dana Reeve Foundation | Member |
| Sarah Skeels | SCI-Coaches | Member |
| Peter Athanasopoulos | SCI-Ontario | Member |
| Matthew Queree | SCIRE | Member |
| Jake Beckstrom | United 2 Fight Paralysis | Member |
| Matthew Castellucio | United Spinal Association | Member |
| Jose Hernandez | United Spinal NYC | Member |
| Bill Fertig | United Spinal Virginia | Member |
| Kimberley Monden | University of Minnesota | Member |
| Angela, Brian, Denny Rodriguez | South Carolina SCI | Member |
| Ian Burkhart | - | Co-Chair |
| Jennifer French | - | Co-Chair |
E-Delphi Survey Process
Survey One: Attributes and Considerations
General attributes and considerations for designing criteria and framework. Asked about Credible, Trustworthy, Reliable, Quality, and Accessibility attributes.
Survey Two: Refined Definitions
Refined attributes and definitions, scoring process and evaluation method, and SCI specialists identification.
Survey Three: Review Panel and Topics
Focused on evaluation process refinement, identification of secondary conditions, tags for categorization, and frequently asked questions.
Survey Four: Final Specifications
Finalized SCI Resource Specialist definition, refined secondary conditions, finalized categorization tags, and treatment areas.
Results
Final Attributes
Credible, Trustworthy & Reliable
This is a source from an authority or expert in the field of SCI and the information provided by this source can be consistently relied upon as honest and truthful.
Practical & Useful
The information provided is appropriate and actionable by or for a person with a spinal cord injury and/or caregiver.
Accessible
The information is provided in a manner that is accessible to people with and without assistive technology so that they can acquire, read, or listen to the content.
Current & Recent
The information is relevant to spinal cord injury with what we know today.
Scoring Evaluations
Scoring Scale
Minimum Requirements
- Each attribute must score at least 3 (adequate rating)
- Overall score must be 12 or above (sum of 4 attributes)
- No individual attribute can score below 3
Scoring Transparency
The Seal will display the overall score, with individual attribute scores visible to users. This allows users to make informed decisions based on their priorities, similar to popular rating systems like Amazon or Google.
Review Panel Composition
Required Panel Members
- Rehabilitation Clinician (PM&R, PT, OT, RN, etc.)
- SCI Resource Specialist
- Category or Special Topic Expert
- At least 50% people with lived SCI experience
Panel Rotation: Members serve 2-year terms on a staggered basis to ensure continuity and avoid overtaxing individuals.
SCI Resource Specialist Qualifications
A SCI Resource Specialist may have one or more of the following qualities:
- Works or volunteers at a SCI resource center at a medical facility or advocacy organization
- Has 2+ years of experience gathering or aggregating SCI information and sharing it with others
- Leads a peer resource group/forum either in-person or online
- Completed training and/or certification for providing SCI resources to others
Information Categories
Physical Health
- Mobility
- Autonomic Health
- Pediatrics
- Women
- Other
Mental & Lifestyle
- Mental Health
- Lifestyle
- Life with SCI
- Aging
- Sexual Health
Activities & Equipment
- Sports, Recreation & Fitness
- Tools & Technology
- Home Modifications & Adaptive Equipment
- Mobility Equipment
- Adaptive Driving
Support & Resources
- Advocacy
- Caregiver
- Support Network
- Alternative Rehabilitation Services
- Parenting with SCI
Social & Financial
- Finances/Employment
- Relationships
- Travel
- Social, Cultural, and Environmental Barriers
- Miscellaneous
Health & Wellness
- Nutrition & Wellness
Note: Information may appear in more than one category to ensure comprehensive access.
Conclusion
The SCI Seal of Approval is a means to help people living with SCI, their families, and care partners to easily identify health information that they can trust. The efforts by the SCI Powered Network Working Group were a collective and iterative process.
The outputs provided in this document will help to guide the execution and framework for building a system directly for the SCI community, while including the voice of those from the SCI community. The Working Group suggests next steps as a pilot program to further test the execution of a program such as this with SCI community input.
Overall SCI-Powered Network Effort
SCI-Powered Network was created through feedback from the SCI lived experience community. This first effort focused on listening to members of the community and gaining feedback for a framework to improve SCI information dissemination.
Information Needs SCI Community Survey
Survey created by representatives from the SCI community focused on how people find SCI information, their challenges and suggestions, and impressions of information. Data collection from February-June 2024 with 448 qualified responses.
SCI Seal of Approval
Development of guidance on framework, ranking criteria, review process, and identification for developing information dissemination tools. Creating an easily identifiable mark to signal which resources are best for people living with SCI.
Information Tools for SCI AI/LLM Learning
Categories and tools to train AI tools with human input collaboratively to ensure the right resources are available to the right person at the right time.
Important: All of these elements of the initial effort are interconnected and should be used together.
Possible Actions
Explore opportunities for co-branding or partnerships between organizations to improve access
Create methods for access to information sources when and where it is needed
Advocate for Telehealth to remain an available option for people living with SCI
Build an identifier, like the SCI Seal of Approval, to help people with SCI decipher trusted information
Execute a framework for building a system directly for the SCI community while including the voice of those from the SCI community
Train AI tools with concerted and continuous input from members of the SCI community
Combine AI/LLM tools with human assessment to provide a comprehensive resource tool
Offer information resource tools that include key trusted sources: medical professionals, SCI organizations and SCI peers
Address trust-building and community adoption as critical factors, requiring collaboration and consideration of diverse experiences
Implement strategies to focus on usability and leveraging existing trust relationships within the SCI community
