Part I: SCI-Powered Network Information Needs Community Survey

Project Goal and Focus

The goal of the SCI Powered Network is to 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 within and outside the SCI community.

The focus of this survey was to address difficulties in finding credible and practical SCI resources.

Key Deliverables

• Gap analysis
• SCI seal of approval
• Design criteria for inclusive information exchange

Survey Introduction and Background

Today people living with SCI are overloaded with information sources; some are good and some are horrible. 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.

Survey 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.

Working Group Members

The Working Group included representatives from:

• BackBones
• NASCIC
• Praxis Institute
• Paralyzed Veterans of America
• Christopher & Dana Reeve Foundation
• SCI-Coaches
• SCI-Ontario
• SCIRE
• United 2 Fight Paralysis
• United Spinal Association
• University of Minnesota
• South Carolina SCI

The Working Group composed sections of the survey into various topic areas, which went through several iterations and discussions until finalized. The survey was built in Survey Monkey and tested among Working Group members and a small cohort of people with SCI who were not members of the Working Group.

Data Collection

The final survey was opened and began distribution on February 23, 2024, and closed on June 10, 2024. When the survey was closed, there were 708 survey participants. Once the data was cleaned, the final total of qualified respondents was 448.

Dissemination methods included direct email, press releases, news stories, social media posts (including influencers), organization newsletters, and chapter member outreach. The team distributed the survey through Working Group members, SCI Model Systems Centers, Activity-based Therapy Centers, Independent Living Centers, and Recreational Sports organizations.

Survey Demographics

The demographics of the survey respondents are reflective of those known from the National Spinal Cord Injury Statistical Center registry.

Respondent Characteristics

• Total Qualified Respondents: 448
• Living with SCI: 80% were individuals living with SCI
• Median Age: 58 years
• Median Time Since Injury: 14 years
• Gender Distribution: 64% male, 33% female

Income Levels

Income level was disbursed with the majority reporting income between $25,000-$49,000 and $75,000-$124,000.

Level of Function

• Incomplete tetraplegia: 30%
• Incomplete paraplegia: 31%
• Complete tetraplegia: 14%
• Complete paraplegia: 20%
• Don't know: 4%
• No impairment: 0.5%

*All of these demographics closely match SCIMS data*

Key Insights and Findings

Difficulty Accessing Information

83% reported difficulty accessing SCI health information. Breaking this down:

Common Reasons People Seek Information

The top three reasons respondents reach out for health information:

Preferred Sources of Information

When asked "What source types do you use or did you use in the past to get SCI-related health information?", the majority of responses were:

• Medical Professionals
• Websites
• SCI Organizations
• Specialized Rehabilitation Centers

Social Media Findings

Social Media ranks high for accessibility but ranks low for reliability.

Key Criteria for Trust

The survey assessed three key characteristics of information sources:

Rankings of Information Sources

Credibility, Trustworthiness, & Reliability Rankings

Practicality & Usefulness Rankings

Accessibility Rankings

Information Retention and Repeat Use

What makes respondents return to or use an information source again and again? ("Always applies" responses):

• Information is credible and trustworthy: 64%
• I have good access to/understand the information presented: 54%
• Information is reliable - it is useful again and again: 48%
• It is easier to go back to this source than remember multiple sources: 41%
• Information is customized/customizable for my SCI: 31%

Information Fatigue

Survey respondents were asked to rate their agreement with statements about SCI health information:

• "There are so many different recommendations about SCI, it's hard to know which ones to follow" - 38% agree, 23% disagree, 23% neutral
• "Information about SCI all starts to sound the same after a while" - 35% agree, 25% disagree, 24% neutral
• "Most things I hear or read about SCI seem pretty far-fetched" - 17% agree, 38% disagree, 31% neutral
• "I feel overloaded by the amount of SCI information I am supposed to know" - 21% agree, 33% disagree, 24% neutral

Preferred Filtering of Health Information

When asked how they prefer to filter health information searches (respondents could choose multiple options):

• Level of Injury: 353 respondents
• Information Source: 269 respondents
• Common Secondary Conditions: 227 respondents
• Time Since Injury: 161 respondents
• Format of Information: 137 respondents
• Geographic Location: 84 respondents

Access to Healthcare

65% rated access to healthcare as good or excellent. Specifically:

• Excellent: 22%
• Good: 43%
• Fair: 13%
• Neutral: 14%
• Poor: 8%

Poor access was reported mainly by urban residents. The data revealed that 50% of the people who reported poor access to healthcare live in big cities.

Perceived Health

57% rated current health as good or excellent. Specifically:

• Excellent: 9%
• Good: 48%
• Fair: 21%
• Neutral: 22%
• Poor: 1%

Access and outcomes are often tied to rehab location.

Telehealth Findings

82% have used telehealth at some point. However, only 42% currently use it.

The decline is linked to reduced subsidies and accessibility. For those who have used telehealth:

• 76% agree or strongly agree that their telehealth experience was good
• 73% agree or strongly agree that telehealth is reliable and valuable healthcare
• 79% agree or strongly agree that telehealth is an option and they have access to it

Rehabilitation Location

Where respondents received rehabilitation by category:

• General Hospital: 124 respondents
• Military or VA Hospital: 92 respondents
• Rehab Institute/Hospital: 79 respondents
• Model System Center: 75 respondents
• No Rehab: 32 respondents
• Canadian Rehab Institute/Hospital: 21 respondents
• Major Health System: 15 respondents
• Other: 4 respondents

34% of people who reported no difficulty finding information received rehabilitation at a military or VA hospital.

Preferred Information Sources by Demographics

The survey found correlations between demographics and information preferences:

• Those with reported incomes below $75,000 per year prefer peer support as a preferred information source
• Those who attended a Canadian Rehabilitation Institute/Hospital, a General Rehabilitation Institute/Hospital, or did not attend any Rehabilitation facility preferred peer support as an information source
• Those who attended a Military or VA hospital prefer conferences as an information source

Conclusions from the Survey

From this SCI community survey, several important conclusions can be drawn:

• The majority (83%) of the respondents have some level of difficulty accessing SCI health-related information
• Medical professionals, SCI Specialty Rehabilitation Centers, and SCI organizations all ranked within the top 3 as trusted, credible, reliable, practical, useful, and accessible sources of SCI information
• Survey respondents' sources include many general sources that are not specific to SCI
• Those with SCI view social media as least credible, trustworthy, reliable, practical, and useful, but they use social media often because it is easy to access
• Among those who responded, the majority received their rehabilitation at a General Hospital (one without SCI specialty) followed by a Military or VA Hospital
• People living with SCI mainly seek health information when they have a concern or issue; therefore access to information sources need to be available when needed
• Access to healthcare information can be one driver of overall health and access to care
• Telehealth is viewed as a good option when it is appropriate and should remain an available option for people living with SCI

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. There are 3 elements to this overall effort:

• Part I - Information Needs SCI Community Survey: This survey created by representatives from the SCI community focused on how people find SCI information, their challenges and suggestions, and impressions of information.
• Part II - SCI Seal of Approval: This effort is to find a way to help people evaluate information. A future goal is to create an easily identifiable mark to signal which resources are best for people living with SCI.
• Part III - Information Tools for SCI Artificial Intelligence/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.

Possible Actions

Based on the survey findings, the report identifies these 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 a combination of key trusted sources for people living with SCI: medical professionals, SCI organizations and SCI peers
• Address trust-building and community adoption as critical factors, requiring collaboration among organizations and consideration of diverse SCI experiences
• Implement strategies to focus on usability and leveraging existing trust relationships within the SCI community