Information Tools for SCI Artificial Intelligence/LLM Learning
A comprehensive framework of categories, attributes, and resources from the SCI community designed to train AI/LLM systems for improved health information dissemination. This document provides community-driven data to help build evolving information sources for people living with spinal cord injuries.
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.
NASCIC also uncovered that 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.
Created from feedback from the SCI lived experience community, NASCIC formed the SCI-Powered Network to begin the first stages of addressing the information gap. There are 3 elements to this overall effort:
- Information Needs SCI Community Survey
- SCI Seal of Approval
- Design Criteria Report - Information tools for SCI Artificial Intelligence (AI)/LLM Learning attributes
Purpose of This Document
This report highlights element three, Information tools for SCI AI/LLM learning attributes. After discussions with the SCI-PN Working Group, it was apparent that any modern information source will need to use AI/LLM tools to remain updated, search and help evaluate resources for people living with SCI.
Project Aims
Aim 1: Key Attributes
Identify key attributes for a resource dissemination solution that can evolve with changing information needs.
Aim 2: Community Features
Identify and vet important features for the SCI community using the same framework as the SCI Seal of Approval.
Methodology
The information provided in the results section was derived from two sources. The first was an initial framework of a condition repository. Information was initially gathered and then vetted through the Working Group. The vetting process was done through a series of e-Delphi surveys with the group followed by group discussions. We also gathered the most commonly referenced resources from our community leaders. The intent was not to be exhaustive but to provide resources that the community finds useful.
The second source for the results is the community survey. Through this exercise, we added to the results for any items that were missing from the Working Group.
How to Use
It is important to understand how to use the results. The information is segmented into categories, which have data listed. These categories and data sets should be used to train an AI/LLM algorithm to learn from the community-driven data to find new and old resources that meet the criteria listed in Part II of this project.
Important Note
The AI/LLM tool cannot be left unmonitored or unsupervised. The AI/LLM tools should be designed for efficiency and not for validation. The resources found with the AI/LLM tool must be vetted by at least one member of a review panel to confirm that nefarious information is excluded.
Information Categories
| Category Name | Description |
|---|---|
| SCI Conditions & Symptoms | Common primary and secondary conditions and symptoms related to SCI |
| Categorization/Tags | Groupings of information for people living with SCI to easily find |
| Specialists seen by people living with SCI | Common clinicians seen by people living with SCI |
| Frequently Asked Questions by people living with SCI | Common questions asked by people living with SCI at various stages of injury/diagnosis: ICU/Acute, Subacute/Rehab, Transition Home, Community living |
| Treatments | Common treatments for spinal cord injury at various classifications |
| SCI Clinics | Clinics for SCI both in the U.S. and Canada |
| Common Useful Products | These are common everyday products used by people with SCI. This list is not exhaustive but intended as an AI/LLM training tool. |
| Common SCI Information Resources | Resources gathered from the SCI Powered Network Working Group and Community Survey |
Results
Each section of the results includes a category or label along with recommended attributes for each category. These attributes and categories may be used to inform or train AI/LLM tools for the SCI community.
SCI Conditions/Symptoms
This category includes health consequences, symptoms, and secondary health effects of spinal cord injury. The 64 listings are in no particular order:
Musculoskeletal & Movement
- Spasticity (Muscle spasms, muscle stiffness, involuntary muscle contractions)
- Joint and muscle pain (arthralgia, myalgia)
- Contractures (joint stiffness, limited range of motion)
- Heterotopic ossification (formation of bone in soft tissues)
- Osteoporosis (bone density loss)
- Orthopedic issues (scoliosis, fractures)
- Gait disturbances
- Reduced muscle mass (muscle wasting)
- Upper limb paralysis or muscle weakness
- Lower limb paralysis or muscle weakness
- Trunk/Core paralysis or muscle weakness
Genitourinary & Gastrointestinal
- Neurogenic bladder (dysfunction of the bladder due to nerve damage, including urinary retention, incontinence)
- Urinary tract infections
- Kidney stones or infections
- Bowel dysfunction (including constipation, bowel incontinence)
- Neurogenic bowel (loss of bowel control due to nerve damage)
- Gastrointestinal problems (gastroesophageal reflux disease, peptic ulcers)
- Sexual dysfunction (erectile dysfunction, loss of libido)
Pain & Sensory
- Loss of sensation and/or proprioception
- Chronic pain (musculoskeletal pain, neuropathic pain)
- Neurogenic pain (pain due to nerve damage)
- Chronic inflammation
- Edema
Mental Health & Cognitive
- Depression
- Anxiety
- Anger, frustration, or distress
- Isolation (social withdrawal, loneliness)
- Cognitive health (memory problems, difficulty concentrating)
- Post-traumatic stress disorder (PTSD)
- Mental Health Adjustments/Coping to or with SCI
- Substance abuse disorders
- Cognitive fatigue
- Impaired executive function
- Adaptive coping strategies
- Reduced quality of life
- Relationship issues (marital, children, family, caregivers)
Autonomic & Cardiovascular
- Autonomic Dysreflexia
- Hypertension (high blood pressure)
- Orthostatic hypotension (low blood pressure when changing positions)
- Postural orthostatic tachycardia syndrome (POTS)
- Impaired temperature regulation (heat and/or cold intolerance, inability to sweat)
- Physical Fatigue
- Excessive sweating (hyperhidrosis)
- Autonomic dysfunction (dysregulation of autonomic nervous system)
- Cardiovascular disease (heart disease, stroke)
- Deep vein thrombosis (blood clots in deep veins)
Neurological Complications
- Syringomyelia (cyst formation in the spinal cord)
- Tethered spinal cord (abnormal attachment of the spinal cord)
- Reactions to medications (side effects, adverse drug reactions)
- Visual impairment (blurred vision, double vision)
- Hearing loss (sensorineural hearing loss, conductive hearing loss)
- Speech difficulties (dysarthria, aphasia)
Respiratory & Sleep
- Sleep problems (insomnia, sleep apnea)
- Respiratory muscle weakness (difficulty breathing)
- Respiratory problems (including pneumonia, atelectasis)
- Cardiorespiratory complications
Other Complications
- Endocrine disorders (thyroid dysfunction, adrenal insufficiency)
- Dysphagia (difficulty swallowing)
- Weight or eating problems (malnutrition, obesity)
- Falls or other injuries (fractures, traumatic brain injury)
- Burns (thermal burns, chemical burns)
- Skin problems (pressure sores, ulcers, dermatitis)
- Increased risk of infections
- Aging Complications
Categorization/Tags
This category includes labels or tags that may be used to classify or organize information.
Specialists Seen by People Living with SCI
This category includes medical or technical specialists seen or consulted by people living with spinal cord injuries.
- Physical Therapists
- Occupational Therapists
- Rehabilitation Physicians or Physiatrists
- Registered Nurse
- Neurologists
- Neurosurgeons
- Orthopedic surgeon
- Urologists
- Gastroenterologist
- Pain Management Specialists
- Registered Respiratory Therapists
- Speech Language Pathologist
- Psychologists/ Psychiatrist
- Case Managers
- Dietitians/ Nutritionists
- Vocational Rehabilitation Counselor
- Social worker
- Recreation Therapists
- Clinical Pharmacists
- Sexual Health Specialists
- Wound Care Specialists
- Endocrinologists
- Assistive Technology Specialist
Frequently Asked Questions by People Living with SCI
This category includes frequency asked questions that are posed by people living with spinal cord injury at various stages of their journey.
| Question | Stage |
|---|---|
| What is a spinal cord injury? | ICU/Acute |
| What is the difference between complete and incomplete spinal cord injuries? | ICU/Acute |
| How long will I be in the hospital/rehabilitation center? | ICU/Acute |
| What immediate interventions can I expect? | ICU/Acute |
| Can you help me understand what my injury means? | ICU/Acute |
| How might my health be impacted? | ICU/Acute |
| Will I ever regain sensation or movement? | ICU/Acute |
| Is this permanent? | ICU/Acute |
| How will my injury affect my bladder and bowel control? | Subacute/Rehab |
| Are there clinical trials I can qualify for? | Subacute/Rehab |
| How can I locate funding for rehabilitation and equipment? | Subacute/Rehab |
| What are the risks of secondary complications? | Subacute/Rehab |
| How will this injury affect my sexual function? | Subacute/Rehab |
| How will my injury impact my mental health? | Subacute/Rehab |
| How do I manage chronic pain? | Subacute/Rehab |
| How can I prevent pressure sores? | Subacute/Rehab |
| How do I manage spasticity? | Subacute/Rehab |
| What changes will I need to make to my home? | Transition Home |
| Can I drive a car? | Transition Home |
| When should I apply for social assistance? | Transition Home |
| Will I be able to have children? | Transition Home |
| Can I return to work or school? | Transition Home |
| Can I travel with a spinal cord injury? | Transition Home |
| How can I connect with a peer-to-peer support group? | Transition Home |
| How do I transition from hospital to home? | Transition Home |
Treatments
This category includes a sample of possible treatments for people living with spinal cord injury at various stages of their journey.
| Treatment Phase | Broad Treatment Description |
|---|---|
| Acute Phase Treatments | Immobilization and Stabilization: Immediate immobilization of the spine to prevent further damage. |
| Acute Phase Treatments | Medications: Corticosteroids: Such as methylprednisolone, to reduce inflammation and swelling |
| Acute Phase Treatments | Surgical Interventions: Decompression Surgery: To relieve pressure on the spinal cord. |
| Acute Phase Treatments | DVT prevention |
| Acute Phase Treatments | Neuroprotection |
| Rehabilitation Phase | Physical Therapy: Exercises to improve strength, flexibility, and mobility. |
| Rehabilitation Phase | Occupational Therapy: Training to help perform daily activities independently |
| Rehabilitation Phase | Assistive Devices: Use of wheelchairs, braces, and other devices to aid mobility and function. |
| Rehabilitation Phase | Electrical Stimulation: Techniques such as functional electrical stimulation (FES) to stimulate muscle movement and improve function |
| Rehabilitation Phase | Activity-based Therapy: Techniques used for repetitive mobility or assistive mobility such as robotic-assisted exercise or exoskeletons. |
| Long-term Treatments and Emerging Therapies | Neurorehabilitation: Advanced rehabilitation methods, including robotic exoskeletons and virtual reality training. |
| Long-term Treatments and Emerging Therapies | Pain Management: Ongoing management of chronic pain through medications, physical therapy, and psychological support. |
| Long-term Treatments and Emerging Therapies | Bladder and Bowel Management: Techniques and devices to help manage bladder and bowel function. |
| Long-term Treatments and Emerging Therapies | Neuroprosthetics & Neuromodulation: Use of electrical stimulation to modulate systems, muscles or nerves for functional use. |
| Psychosocial Support | Counseling and Therapy: To address the emotional and psychological impact of SCI. |
| Psychosocial Support | Support Groups: Connecting with others who have experienced similar injuries for mutual support and encouragement. |
| Psychosocial Support | Vocational Rehabilitation: Training and support to return to work or school. |
| Research and Future Directions | Gene Therapy: Investigating genetic approaches to repair or compensate for spinal cord damage. |
| Research and Future Directions | Stem Cell Therapy: Research is ongoing into the use of stem cells to repair spinal cord damage. |
| Research and Future Directions | Regenerative Medicine: Techniques aiming to regenerate damaged spinal cord tissue. |
Useful Products
This category includes a broad range of products that people living with spinal cord injury may find useful in their daily lives. This is not an exhaustive list but one to help train a model.
Customized Wheelchairs
- Head rest
- Head array control
- Joystick control
- Sip-n-puff control
- Lateral supports
- Seating systems, pressure relief
- Seat elevator
- Power leg rests
- Standing power chairs
- Off road wheelchairs
- Natural fit hand rims
- Clothing guards
- Free Wheel off-road device
- Power assist: Smart Drive, Smoove, Navione, etc
- Wheelchair brakes, scissor brakes, D-Lock Braking System
- Manual standing wheelchair
- Beach wheelchairs
- Sports wheelchairs
Cushions & Support
- High profile cushions
- Low profile cushions
- Customized, often after 'pressure mapping'
- Sports cushions
- Lapstacker for manual rigid, manual folding & power wheelchairs
- Wheelchair backpacks
- GRIP Solutions lapboard
- Wheelchair luggage carrier
- Lap board
Home, Daily Care, and Lifestyle Products
- Entry ramps-portable wheelchair suitcase ramps---permanent wheelchair ramps
- External/porch wheelchairs lifts
- Wheelchair elevators both framed, add on or internal elevators
- Inclined platform lifts
- Roll-in-shower is best overall —built in, tile or modular panels
- Shower/commode combination chair such as Invacare Mariner
- Swing-away hinges to significantly increase door width
- Self-closure spring hinges for exterior and selected interior doors
- Split king adjustable beds with firm mattress
- ROHO bed toppers for maximum pressure relief
- Adjustable bed rails
- Home automation like Alexa
- ADL splints and devices
- Door lip thresholds
- Adaptive kitchen equipment
- Right angle knives
- Home environmental controls
- Adaptive beds and mattress
- Walkers
- Standing frames
- FES bikes
Vehicle Modifications
- Full size and minivan modified wheelchair vans, rear and side entry
- Vans, SUV's and sedans used for self-transfer
- Vehicle hand controls, options include Veigel Compact II
- Scott Driving System for high level quads who wish to drive
- Portable hand controls
Conclusion
The objective of this effort was to identify health information attributes, categories, and resources from the SCI community that may be used to build health information distribution methods. These listings can be used to train AI/LLM information source systems. Our team recognizes that in the current environment, a static database or source will never be sufficient to evolve with rapidly changing information.
This project was designed to identify key features and attributes that can train an AI/LLM tool to become an evolving information source for people living with SCI. These listings should be used in combination with the findings provided in Part I - SCI Information Needs Survey. In addition, AI/LLM tools need to be combined with human assessment to provide a comprehensive resource tool.
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. A Working Group of representatives from the SCI lived experience community and community organizations was formed and drove the development and input for the results.
Information Needs SCI Community Survey
This is a survey created by representatives from the SCI community. The survey focused on how people find SCI information, their challenges and suggestions, and impressions of information. Data collection took place from February-June 2024 with 448 qualified responses.
SCI Seal of Approval
This effort is to find a way to help people evaluate information. Here we developed guidance on the framework, ranking criteria, review process, and identification for developing information dissemination tools for the SCI community.
Information Tools for SCI AI/LLM Learning
This information was directed by the premise that we can no longer use static databases; the combination of artificial intelligence with human involvement is the tool for the future. Provided are categories and tools to train AI tools collaboratively.
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 community voice
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
Implement strategies to focus on usability and leveraging existing trust relationships
