An eJourney through the Life Cycle of Spinal Cord Injury

Abstract
SpinalCordInjury(SCI)isadebilitatingandcostlyconditionwithaveragesurvivalof40years
postinjury.The impact on health expenditure and the social burden are high as SCI creates high
dependence on clinical support as well as on family and society for both social and welfare
support.
Full understanding of the clinical and financial impact, together with the time course of
complications and medical encounters is difficult because of the disparate care locations,
multitude of paper and electronic encounter records generatingahugeamountofpatientdata
overtime.
ThispaperdiscussescurrentproblemswithinformationaccessforpatientswithSCIinAustralia
fromboththecliniciansandpatientsperspective.Theresearchidentifieduniquepatternsof
patientswithSCIandtheirassociatedclinical,socialandfinancialneeds.Adetaileddescription
ofvariousdatacustodiansassociatedwiththeconditionisexplored.
From the literature review and informal interviews with Health Informatics Practioners, the
research identified there are issues of obtaining access to information, data linkage and
conforming data content all of which are substantial barriers to obtaining a longitudinal
representation of the course of patient health after a spinal cord injury.
In this paper we analyse the current sources of data available to patients' carers and medical
services managing SCI patients and considered how they might be better collected and
integrated to enhance the long-term treatment of them.
Improvedunderstandingthroughepidemiologicalanalysisofindividualpatientjourneys may
identify opportunities for interventions that improve health outcomes.
Keywords Spinal Cord Injuries, Clinical Data Linkage, Health Information Systems, Health
Outcomes, Health Journey, Health Information Flow, Data Custodians
1. Introduction
Spinal Cord Injury (SCI) is a traumatic condition where there is a high dependency on medical
and social support . The average life span after injury is around 40 years and the latest review
suggests there has been a significant increase in incidences in the age group over 40 years .

Patients with spinal cord injury have long term treatments and rely heavily on medical and social
intervention. Over the years of medical treatment, patients accumulate a large set of medical data
at a public (Commonwealth, State and Community) and private level. This distributed data is
difficult to identify and key information may not be available to clinicians or to patients at the
right time and place as clinical data are kept at different databases .
Research to date has been focused on clinicians and their clinical management of the disease and
on administrators and government arbitrators and their health administration roles. There has not
been any study focused on the patient perspective regarding their clinicians, social management
and outcomes.
There are no published reports of systems being used to map the individual patient profile of
patients with SCI, nor has any study reported work being done to improve clinical support for
SCI patients using technologies that are available. There is a gap in systematic approaches to
health information support for SCI sufferers in Australia.
The aim of this current research is to develop a basis for a systematic approach to working with a
mass of health information that is currently not mobilized effectively. Evidence suggests that SCI
patients constantly return to hospital for treatment for conditions such urinary tract infections,
pneumonia and a range of other conditions .
This research proposes to investigate the life cycle of information generated from SCI and how it
can be linked and integrated to collate and make sense of the data relevant to these incidents to see if
it can be used predictively to preempt problems and ultimately improve outcomes for patients with
SCI.

2. Background
2.1. What is Spinal Cord Injury (SCI)?
Spinal Cord Injury (SCI) is a traumatic condition. The effect of SCI depends on the type of
injury. There are two types of injuries: complete and incomplete. Complete injury is a severe
injury where there is no voluntary function or sensation bilaterally below the level of the injury.
An incomplete injury has some bodily function below the level of the injury with varying
degrees of mobility and sensation. Some patients might have no movement but some sensation or
vice versa .
The level of injury is very helpful in predicting which part of the body will be affected. The
motilities vary depending on the types of injury and the higher the injury toward cervical nerves,
the higher will be the dependency on the medical and social support and prolonged rehabilitation
. The American Spinal Injury Association (ASIA) Standards have been widely used to assess
motor function of SCI. Spinal cord injuries are divided into largely four sections: cervical (C1 to
C7), thoracic (T1 to T12), lumbar (L1 to L5) and sacral nerve (Sarhan, 2012).

Table 1 describes conditions and injury sites of cervical and thoracic, as they are the more serious
conditions, to give some reflection of the complexity of the condition and how it could relate to
the amount of information generated as a patient experiences the effects of SCI .
Table 1 Summary of Clinical Description of Spinal Cord Injuries
Injury site
C-1, C-2, C-3, C-4
C-5

Condition
Often on ventilation for breathing as well as pace makers
Shoulder and bicep but no wrist movement

C-6
C-7 & T-1

Wrist but no hand movement

Straighten arms but little dexterity with hands and fingers

T1 to T-8

Control of hands but poor trunk control

T-9 to T-12

Good trunk control and good abdominal muscle control.

2.2. Prevalence and Incidence of SCI in Australia

According to the Australian Institute of Health Welfare, in the period of 2007- 2008 there were
362 new spinal cord injuries. The majority (79%) were due to traumatic causes. The incidence of
traumatic SCI in other countries shows variation from 10.4 to 84 cases per million per year
compared to 15-17 cases per million in Australia.
Thirty percent of injuries reported by AIHW were from the ages 15-24, and the trend showed
significant increase in the average age at injury from 38 years in 1995-96 to 42 years in 2007-08.
Males accounted for 84% of traumatic SCI. Transport-related injuries (46%) and increases in
falls (28%) over the same period were the main contributors to traumatic SCI. Rates for the
Northern Territory and Western Australia were significantly higher than the national incidence
rate .
About 60% are wheelchair dependent and there are social problems associated with this (e.g.
poor access to transportation), limited social opportunities creating psychosocial complications
(life satisfaction is adversely affected). Medical complications (urinary tract infections,
respiratory infections and bacterial infections) are common and there is a high prevalence of
sleep apnea .
Given the high dependence on medical and social intervention, an increase in the number of
acute SCI patients poses a high burden on health expenditure costing a total of 2.0 billion dollars
and a life time costing per SCI patient 5.0 million dollars for paraplegia and 9.5 million dollars
for quadriplegia across Australia .

2.3. Setting
In Victoria, there are three trauma hospitals that take patients with spinal cord injuries; The
Alfred Hospital, Royal Melbourne Hospital and The Austin Hospital. The Austin Hospital is the
major trauma hospital where all patients with spinal cord injuries end up and hence it is like a
funnel. Once patients are discharged from these acute hospitals, the majority of them are moved
to a rehabilitation hospital for extensive treatment .

3. Methods & Scope

The research has adopted a two pronged approach to investigate the information flow involved
with SCI.
3.1. Literature Review
A systematic review of published literature using a keyword was performed on four main
databases MEDLINE, PubMed, CINAL and Web of Science. The inclusion criteria of five years
(2008-2013), English language and peer reviewed journals.
Key word searches included broadly information needs SCI, clinical data decision support,
clinical data linkage, information use by SCI, Common problems with SCI, disparate
health information and Australian Health Information Systems.
Information gathered from the official websites of financial and statutory bodies were compiled
and their relationship to SCI was explored.
3.2. Informal Interviews
For this study, six informal interviews were held, sampling suggested by Newman and
contingency plan suggested by de Vaus . Three interviews were with chief health administrators
from three trauma centres whose role was for managing clinical information. One interview was
with the rehabilitation centre in Victoria. Two interviews were held with two senior clinicians
who treat SCI in Victoria to get a clinical perspective .
The interview questions were drawn as suggested by Layman and Newman . The questions were
formulated to cover, accuracy, currency and standardization of clinical coding from three trauma
centres and one rehabilitation centre.
The interviews were transcribed according to Dubois and analyzed qualitatively following
methods used by Huberman and Newman where merging themes were grouped . The notes taken
from observational data were taken into account as they provide rich sources .

From both the literature review and interviews, it was possible to obtain information relating to
different data custodians of SCI, the coding process, the types of data given out and the
frequency of data and the roles they play.

4. Findings
A typical scenario of SCI is described as a case study of John below:
Johns Journey with SCI
24 year old John, travels 23 Km each day on his motorcycle to go to work. One morning, he has
an accident and ends up in ICU at one of the major trauma centers in the Northern suburbs of
Melbourne. He suffered extensive injuries. After 10 days at ICU he is discharged from the
hospital. After discharge, he receives a regular rehabilitation program near his home for many
years. He is wheel chair bound, depends on family, friends and social welfare for transport. He
is depressed, drinks alcohol, smokes and often takes medications for sleep apnea. He visits local
GPs for medications and has to visit major hospitals for secondary conditions such as
pneumonia, urinary tract infections and skin problems.
From the time John is admitted to the emergency department on to Intensive Care Unit (ICU)
through to discharge, and then readmitted to hospital for secondary infections followed by
extensive rehabilitation. He would generate a range of information through the span of his injury.
The data is generally kept at the location of the care providers who may be spread and diverse.
The following paragraph discovers a range of information that is generated by John and how it is
used by various data custodians.
Johns information can be divided broadly into the following four categories:
1.
Clinical information flow of Acute Spinal Cord Injuries
2.
Clinical Information flow of Chronic Spinal Cord Injuries
3.
Information flow of associated funding custodians
4.
Information flow for Statutory custodians
4.1. Clinical information flow of Acute Spinal Cord Injuries
The first point of data collection is when John is admitted to hospital with an acute injury. The
condition can cause long term physical disability and complications which can disrupt and limit
quality of life .

Figure 1. Clinical information flow of Acute SCI

As John is taken into the hospital as results of injury, he would be admitted to casualty. His initial
assessment will be done at casualty, the data is coded by ICD-10 version and the information
stored under Victorian Emergency Minimum Dataset (VEMD) database .
Often with significant injuries such as C-1 to C-4 patients are taken to Intensive Care Units
(ICU) for intensive treatment after initial admission at the emergency department . He has
damage to the spinal cord that resulted in a loss of mobility or feeling. After the initial
assessment, he is taken to the Intensive Care Unit (ICU), where he spent many days on
ventilators. His condition can cause long term physical disability and multiple complications
which can disrupt and limit quality his of life . The clinical information while he was in ICU
were sent to ANZIC-APD .
In addition to clinical information from the emergency department (VEMD) and ICU (ANZICAPD) datasets, John would have clinical information from pathology, radiology as well as
Pharmacy. The clinical results from pathology would stay within the laboratory information
system, X-rays and other pharmaceutical information would stay within the hospital information
system (HIS). Hence, from acute injury site, there are at least four different databases where
Johns information is kept;
casualty (VEMD), ICU (ANZICS),
radiology as part of the hospital information system Cerner,
pathology has independent laboratory information system called Kestral which sits within
Cerner and
pharmacy which sits within hospital information system Cerner
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as can be shown below.

Figure 2 Acute Injury: Databases

4.2. Information flow of Chronic Spinal Cord Injuries

After discharge from ICU, John went through a lengthy rehabilitation process. He had to visit
local GPs for various recurrent infections and was referred back to local hospitals for a number
of significant conditions that required hospitalization . The following diagram (figure 3) holds
clinical datasets about John.

Figure 3. Clinical Information Flow of Chronic SCI

He frequently visits specialists for skin problems, General Practitioners (GP) for urinary tract
infections and sleep apnea . He also experiences problems with blood pressure, ability to control
temperature and sweating . John depends on drugs to help ease his conditions. He frequently
goes to pharmacies for prescriptions. Pharmacies store a large database of health information
about Johns drug history .
Each time he visits GP, his blood is taken for pathology testing monitoring infections and
allergies . His conditions make him grumpy, often upset and he has regular sessions with
psychologist .
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Here in Johns chronic stage of SCIs, not only are the data kept at acute injury site but also at
many different external sites. The problem with these clinical data custodians is that each data
custodian will have the necessary information from their record keeping, but the whole
information is not available to any one particular person. Furthermore, not all the clinical coding
is done uniformly, which causes problems in linking the data.
4.3. Information Flow of Associated Health Funding Custodians
Health funds are another group of data custodians through payment systems maintaining large
volumes of patient health records.
The Australian health system has both public (Medicare) and private systems (private insurance
companies). Injuries sustained from work are covered by WorkCare. Transport-related injuries
are dealt with by Traffic Accident Commission (TAC) .

Figure 3. Health Funding Data Custodian

The four health funding custodians as shown in figure 3 are independent of each other. The
details of each health custodians are explained below.
Medicare is one of the major health funding custodians of patients with SCI. Patients with SCI
would use either Medicare or Private insurance companies to cover their medical expenses.
Medicare Australia is an Australian Government agency delivering a range of payments and
services to the Australian community. It is a prescribed agency under the Financial Management
and Accountability Act 1997 and is a statutory agency under the Public Service Act 1999 . Most
Australians contribute 1.5% of their taxable income to the Medicare levy.
Private insurance companies are another group of financial data custodians which hold a huge
store of details on patient claims. The study done in 2009 shows that 51% of the population had
some form of private health insurance . The Australian taxation system encourages those on

middle to high income to take out private insurance. There are numerous private insurance
companies such as HBF, Medibank, Australian Health, Teachers Union and QBE who would
hold information about claims made by patients with SCI.
Details of spinal cord injuries resulting from transport accidents are sent to Transport Accident
Commission (TAC). In the period 2007-2008, cases of SCI resulting from such causes
were 46% of the total. 78% percent of them involved serious traffic crashes; the rest
occurred on bike trails, farms and beaches .
Injuries relating to work are reported to Work Care. Its annual report shows that fewer claims
have been made apparently as a result of better education in Occupational Health and Safety
(OH&S), as can be seen in the table below. Most of the claims relating to SCI are non-trauma
cases .
Table 2. Comparison of claims in the last 3 years
Claims
Claims/1000 workers
Fatalities
Source: .

20082009
10.8
27

20092010
9.98
<16

20102011
10.58
26

Four health funding custodians are independent of each other and do not coordinate. One
example of a coordinated system exist in the United States. Here, four data systems the General
Estimates System (GES), the Fatality Analysis Reporting System (FARS), the Crashworthiness
Data System (CDS) and the Crash Injury Research Estimates System (CIRES) - are all integrated
and available to decision and policy makers at the national level.
For monitoring road traffic injuries, a system that integrates information from both police and
health care sources would be ideal . Even though this is not related to health material, the
coordinated system can be applied to health systems to integrate services.
4.4. Information Flow for Statutory Custodians
The Australian and Victorian government collects information about SCI patient details on a
regular basis from hospitals and rehabilitation centers to Australian Spinal Cord Injury Register
(ASCIR), Victorian Admitted Episodes Dataset (VAED) and Victorian State Trauma Outcomes
Registry (VSTORM) as can be seen in figure 3. Agencies are independent of each other and
there is no health information flow between them. Each agency is explained below.

Figure 4. Statutory Data Custodians

Patient data are sent to the Australian Spinal Cord Injury Register (ASCIR) which is a part of
The Department of Health established in 1995 by The National Injury Surveillance Unit of
Australian Institute of Health and Welfare. The role of ASCIR is to monitor the system to reduce
preventable deaths and permanent disability .
The Victorian Admitted Episodes Data Set (VAED) collects morbidity data on all admitted
patients from Victorian public and private acute hospitals including rehabilitation centres,
extended care facilities and day procedure centres . The information collected is used for;
planning health service, policy formulation, casemix funding and epidemiological research. All
of incidences both private and public including rehabilitation are sent to VAED .
Victorian State Trauma Outcomes Registry is commissioned by The Department of Human
Services in the Victorian State in collaboration with the TAC to reduce preventable deaths.
Changes to systems of care are monitored to ensure outcomes are improving including the
reduction in deaths and disability over time. The registry collects trauma related information
from statewide hospitals. In 2008-2009, registry collected information from 138 hospitals in
Victoria. There has been a noticeable increase in trauma cases from 2294 in 2005 - 2006 to 2646
in 2008-2009. Transport related accidents will be sent to TAC as well as VSTROM .
Each data custodian will have their necessary information from their record keeping, but it is not
easy to get access to all the information that is necessary to ascertain the complete history for any
one person.

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5.

What is the solution?

This paper has presented a review of information flow of patients with SCI in Australia, using
John as an example and has identified different data custodians in both acute and chronic stages
of spinal cord injuries. The amount of data generated over the journey of SCI patients is
extensive. The question is how to best utilize this information for better management of health
care.
Where several data sources are available, it is important that the data be linked to obtain
maximum value between different data sources and users.
Many different countries have taken steps towards linking patient health records to enable
sharing amongst health providers. The National Health Service in England has implemented a
system called Spine to provide national e-health services in England. The system combines
patients profiles via a unique identifier, has a directory that provides services to registered health
care providers, and has a summary of health records .
The Netherlands has a similar program called AORTA which enables health data to be
disseminated amongst health providers and health insurers . The Netherlands government is
trying to implement virtual electronic patient record (EPR) to share health information between
health providers using a patient-unique identifier called BSN.
The Australian government initiative NEHTA (national e-health transition authority) has
implemented Personally Controlled Electronic Health Record (PCEHR) in July, 2012. The
government claims that a PCEHR can provide:
Summaries of patients health information;
Secure access for patients and healthcare providers to their e-health records;
Rigorous governance and oversight to maintain privacy .
National Authentications Services Health (NASH) will issue digital certificates and
tokens to health providers to enable them to navigate through patient data.
While this may be a valuable start to collating information for SCI patients, developers of the
PCEHR need to be aware of the problems that this particular condition presents and the data that
its successful treatment requires i.e privacy .
Currently, the Australian PCEHR is at its infant stage, it only links patients visits to doctors via
Medicare for adults. It does not provide diagnosis or results of the patient condition. For children,
that are less than the age 18, it provides vaccination records which can be very helpful (NEHTA,
2013). It has potential to include medical diagnosis, pathology results and pharmacy results to
support both clinicians and patients for better for services.
Looking at the many data sources we have listed in this paper that provide and store data about
SCI patients, consideration needs to be made as to whether all these sources will be tapped in
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constructing the PCEHR and what responsibilities will fall on patients to ensure their record
includes all the data sources that might be useful.

6. Future Studies
In this paper we have presented a problem that the health system needs to address dealing with
patients with SCI. More research into better co-coordinated health systems is required linking
sharable health information and examining the challenges in the standardization of patient
records.
A longitudinal study is underway to build an individual patient profile of patients with SCI to
understand the journey of patients with SCI and its associated information flow. From the unique
individual profile and personalized controlled electronic heath record, it would be possible to
develop clinical decision support systems to alert doctors of changing best practices and to help
patients manage their own health outcome.
Further study is needed to develop a model of electronic health recording that has a patient
profile that emphasis the unique conditions of SCI, keeps track of medications, communications
with doctors and social support to assist the long term condition of patients with SCI and their
carers.

7. References

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