SCI Data in Oregon
In 2022, 9983 people in Oregon lived with a spinal cord injury. Their total healthcare spending was $386 million. That is an average of $38,665 per person.
Oregon Spinal Cord Injury Data Report
Quantifying Prevalence, Utilization, Costs, and Health Disparities
Understanding Data in Oregon
Why is reliable data important?
Understanding the true impact of spinal cord injury (SCI) relies heavily on reliable data. Without solid information, it is very difficult to estimate how many people are affected. Crucially, without this reliable data, the individuals living with spinal cord injuries often remain “invisible” to public awareness and policy-making, making it harder to advocate for our needs.
Here’s why reliable data is so important:
- Measuring the Problem: Reliable data allows us to know how many new spinal cord injuries happen each year and how many individuals are currently living with SCI. This helps us understand the overall scope of the problem and begin to advocate for better, more efficient and effective care.
- Influencing Policy and Healthcare: Reliable data is critical for influencing government policies and healthcare systems. By accurately reflecting the prevalence and needs of people with spinal cord injuries (SCI), we can advocate for improved long-term care, rehabilitation, and support services. Data can also demonstrate how early interventions can significantly reduce the costs associated with common secondary conditions—such as pressure injuries and urinary tract infections (UTIs)—benefiting both individuals and the broader healthcare system.
In short, reliable data transforms guesswork into informed decisions. It allows us to advocate for evidence-based changes that can ultimately improve the lives of people living with spinal cord injury, ensuring that our needs are recognized and addressed, and making SCI visible to the rest of the community.
What is APAC and how do they gather data?
Oregon’s All Payer All Claims (APAC) data is a large-scale database designed to provide a comprehensive picture of healthcare costs, quality, and utilization across the state. It systematically gathers and stores detailed information from a wide range of sources, aiming to capture most of the health care activity in Oregon.
What kind of data does APAC collect?
APAC collects administrative health care data that is generated by insurers for purposes like issuing coverage and processing payments. This includes:
- Medical claims: Information on services provided, diagnoses, procedures performed, and amounts paid.
- Pharmacy claims: Details about prescriptions, drug costs, and payments.
- Dental claims: Data related to dental services and associated payments.
- Subscriber billed premiums: The amounts individuals or employers pay for health insurance coverage.
- Member eligibility data: Demographic information about insured individuals, such as date of birth, gender, geography, and race/ethnicity.
- Provider data: Information about healthcare providers, including their location and specialty.
- Alternative payment methods (APMs): Since 2017, APAC also collects data on non-claims payments made by payers to healthcare providers, which are part of newer payment models that focus on outcomes rather than just the volume of services.
How is APAC data gathered?
The Oregon Health Authority (OHA) is responsible for maintaining the APAC database. Data is gathered through a mandatory reporting system, meaning that specific entities are required by Oregon law to submit their claims information to APAC. These entities include:
- Commercial health plans
- Licensed third-party administrators (TPAs)
- Pharmacy benefit managers (PBMs)
- Medicaid (Oregon Health Plan – OHP/CCO and Fee-for-Service)
- Medicare
These organizations submit their data to APAC on a rolling schedule. This means claims data for a set period are collected multiple times a year. This process helps to account for “claims lag” (the time it takes for claims to be fully processed) and potential adjustments to claims, ensuring the data is as complete and reliable as possible. It typically takes about 15 months from the initial submission deadline for a full calendar year of claims data to be considered complete.
The collected data undergoes rigorous quality validation, aggregation, and processing before being securely stored in the APAC data warehouse. This systematic collection and management allow Oregon to have unbiased, factual data on healthcare costs and utilization for various policy discussions, research, and efforts to improve the state’s health system.
Oregon APAC Data on Spinal Cord Injury
The tabs of this spreadsheet contain information on Oregon residents who were diagnosed with a spinal cord injury anytime from January of 2011 to the end of December, 2022, and whose diagnosis was captured in a medical claim in Oregon’s All-Payer-All Claims database. Demographic data tabs include:
- All Years Demographics: Data on all individuals who had a diagnosis of a spinal cord injury in APAC anytime from 2011-2022. (includes individuals who died or left the state during the period under review)
- Demographics By Year: Data on the number of prevalent and incident cases of spinal cord injuries among Oregon residents with data in APAC from 2011-2021 along with key demographic statistics. See definitions of prevalent and incident cases below.
- Geography by Year: Data on the area of residence within Oregon of individuals with a spinal cord injury.
- Mortality: Data on the number of people with a spinal cord injury in Oregon who died each year, based on data from Oregon’s Vital Statistics records, after crossing with APAC demographic data.
- Data Dictionary: Details on how each variable in the databook was defined.
- Diagnosis Codes: The diagnosis codes (ICD-9 and ICD-10) used to identify and define spinal cord injuries.
Before reviewing the data, it is recommended to read through the data notes , as well as the data dictionary.
Data Notes
While reviewing the data in the spreadsheet below, it is important to keep in mind the following limitations on what data were included and what data has been excluded. The counts of prevalent and incident cases of spinal cord injury in this booklet are certain to be an undercount of the number of cases in Oregon as a whole, because of these limitations.
Limitations related to the Medicare-eligible population: Individuals who only had insurance coverage from Medicare Fee-for-Service during the period in question are excluded from this databook, as the terms of APAC’s data use agreement with the Centers for Medicare and Medicaid Services (CMS) does not allow for the release of these data. As a result, the overall number of Medicare-eligible individuals with a spinal cord injury in Oregon – and consequently, the 65+ yo population with a spinal cord injury in Oregon – will be under-counted. The Medicare data in this booklet is primarily data on Medicare Advantage enrollees that was submitted to APAC by commercial insurance carriers who manage these programs. In December of 2021, about 446,541 individuals in Oregon had Medicare Advantage coverage, out of 905,289 Medicare-eligible individuals. This represents approximately 49% of the Medicare-eligible population that was likely represented in the data pulled for this project for 2021. There may be some data on individuals with medical coverage through traditional Medicare, if they have pharmacy coverage enrollment data from a commercial Part D benefits provider.
Of note, the percentage of Medicare-eligible individuals in Oregon with Medicare Advantage changed over the time period covered by this booklet. For example, in December of 2016, only about 43.8% of Medicare-eligible individuals in Oregon had coverage through Medicare Advantage. Thus, in interpreting the number and percent of individuals with Medicare Advantage coverage (and thus the number/percent of individuals aged 65+) and a spinal cord injury over time as represented in this booklet, it is important to remember that these changes are impacted not only by who was being injured but also by who was being left out of the data. Relative to the later years in this book, the number of individuals aged 65+ in earlier years is likely to be more of an under-count of this population because fewer people had Medicare Advantage coverage earlier in the period.
Limitations related to the commercially-insured population: Prior to 2016, data from commercial insurers included data both on individuals with fully-insured and self-insured commercial insurance. In 2016, the Supreme Court of the United States issued a ruling in the Gobeille v. Liberty Mutual Insurance Company case clarifying that states could not require self-insured ERISA-covered health plans to submit data. As a result, beginning in 2016, any submission of data on individuals with self-insured commercial plans was voluntary for commercial insurers. Since almost half of Oregonians with commercial health insurance in Oregon are covered through a self-insured plan, this means that the number of people with a spinal cord injury in Oregon and who are covered by a commercial insurer was likely an under-count from 2016 on forward. An analysis carried out by APAC analysts found that in 2018, approximately 36-61% of the commercial self-insured population in Oregon was represented in APAC, in contrast to approximately 100% of the fully-insured population. For additional information see this brief.
Other limitations: In addition to the specific considerations listed above for the Medicare and Commercial lines of business, it is helpful to keep in mind other populations that might not be represented in APAC at all. For example, APAC does not include information on individuals without health insurance. It also does not include claims from certain Federal programs such as the VA or TriCare, or claims paid by auto insurance companies related to motor vehicle accidents.”
This spreadsheet contains information on prevalent and incident cases of spinal cord injury in Oregon from 2011-2022. Given the nature of claims data and some of the limitations in what data are included and excluded from APAC (as noted above), it is important to define what these terms mean in context:
Prevalence: An individual is counted as having a prevalent case of a spinal cord injury in these data based on a number of factors, with two different methods of identifying a prevalent case applied depending on the type of injury. For individuals with any claims in APAC indicating that they have been diagnosed with a full spinal cord lesion or paralysis, they are considered a prevalent case starting from the year that their first spinal cord injury appears in APAC claims data. Thereafter, these individuals continue to be counted as prevalent cases every year that they have enrollment data in APAC. For individuals who only have spinal cord injury diagnoses indicating a partial spinal cord lesion in APAC, they are ony considered a prevalent case during the year after any claim indicating a diagnosis of a spinal cord injury, and only during months in which they have enrollment data. Note that there are a number of reasons a person who had enrollment data in APAC at one point in time might cease to have enrollment data later on, including 1) They left the state of Oregon to live elsewhere; 2) They changed insurance to an insurer who does not submit enrollment data to APAC; or 3) They died.
Incidence: An individual is counted as having an incident case of spinal cord injury in these data in the year in which their first diagnosis of spinal cord injury appears in APAC. In this context, an individual may have a “”first”” diagnosis of a spinal cord injury for a number of reasons, including 1) They are truly an incident case of spinal cord injury – ie, they were not in APAC data prior to the first APAC claim with this diagnosis because they had not previously had a spinal cord injury; 2) They moved to Oregon from another location and the first diagnosis of spinal cord injury in Oregon represents the first time they sought related medical care in the state; or 3) At the time they were first injured, they had medical coverage from an insurance plan that was not required to submit data to APAC. The first diagnosis to appear in APAC happens after they switch to an insurer that does submit data to APAC.
Additional Information
National SCI Statistic Center
The National Spinal Cord Injury Statistical Center (NSCISC), located at the University of Alabama at Birmingham (UAB) Department of Physical Medicine and Rehabilitation, supports and directs the collection, management and analysis of the National SCIMS Database.
The National SCIMS Database has been in existence since 1973 and captures data from an estimated 6% of new SCI cases in the U.S. Since its inception, 31 federally funded SCI Model Systems have contributed data to the National SCIMS Database. As of February 14, 2025 the database contained info on 54,618 (Registry + Form I) persons who sustained traumatic spinal cord injuries. To assure comparability of data acquired by personnel in various centers, rigid scientific criteria have been established for the collection, management and analysis of information entered into the database. National Spinal Cord Injury Statistical Center staff has also developed quality control procedures that further enhance the reliability and validity of the database.
2024 Annual Statistical Report – Public Version
Christopher & Dana Reeve Foundation
The Reeve Foundation is dedicated to curing spinal injury and improving the quality of life for people living with paralysis.
Prevalence and Causes of Paralysis- United States, 2013
A national, population-based, random-digit-dial survey of over 70,000 households was conducted in 2012 to better understand the health and quality of life of people living with paralysis. The survey used a functional definition of paralysis based on the International Classification of Functioning: “Paralysis is a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities.” Paralyzing conditions include stroke, spinal cord injury, multiple sclerosis, spina bifida, cerebral palsy and others. Items used on the population survey were taken from normed, validated surveys including the American Community Survey, Behavioral Risk Factor Surveillance System and others, for the purpose of comparing people who are paralyzed with people with other physical disabilities as well as with those without disabilities. The survey focused on health status, severity, use of and barriers to receiving health care, secondary conditions and comorbidity, affordability of health care, preventive care and health risk behaviors.
Secondary Health Conditions and Paralysis Report
Background: Understanding the prevalence of secondary health conditions (SHCs) and their relationship to health status can inform optimal clinical care for persons with paralysis. To date, population-based analyses on these indicators have been lacking.
Objectives: To assess (i) the prevalence, severity and duration by causal conditions of paralysis in a national US adult population; (ii) SHCs by causal condition of paralysis; and (iii) how SHCs, severity and duration of paralysis relate to overall health status.
Design: Cross sectional, population-based study, with negative binomial regression analyses.
Data Source: Secondary data from a nationally representative sample of adults with paralysis. The U.S. Paralysis Prevalence and Health Disparities Survey is a random digit-dial survey of over 70,000 households to identify 1,305 households with a person with paralysis as defined by movement difficulty.
Participants: 1216 adults with paralysis.
