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Advocacy
Trauma
Registries & Surveillance Systems (Overview)
TBI
Registries & Surveillance Systems
Registries are used to gather data
on brain injury incidence, cause, and demographic characteristics of injured
persons on a state-by-state basis. The data are used in planning and evaluating
treatment and rehabilitation programs, particularly as they impact Medicaid and
other social services provided by state agencies. Registry data may also be
used for other purposes including; (1) to develop injury
control and prevention strategies; (2) as a base for further injury research;
(3) as a mechanism for service referral; and/or (4) as an eligibility criterion
for program participation.
Generally states establish
registries through legislation. The legislation usually mandates (1) which
department or agency is responsible for data collection; (2) confidentiality
requirements; (3) which entities (i.e. hospitals, trauma centers) must report
cases to the registry; and (4) what information must be reported. The
information reported always includes basic demographic characteristics and
ICD-9 codes. Some states may require hospitals to supply other information, if
known, such as personal identifiers (i.e, name and
address); case number linked to hospital records; details on cause of injury;
and patient disposition/discharge.
Based on information from the
Centers for Disease Control and Prevention, the National Association of State
Head Injury Administrators, and responses from state brain injury association
leaders, registries or surveillance systems exist in 32 states: Alaska,
Arizona, Arkansas, California, Colorado, Florida, Georgia, Illinois, Iowa,
Kansas, Kentucky, Louisiana, Maryland, Minnesota, Mississippi, Missouri,
Nebraska, Nevada, New Mexico, New York, North Carolina, North Dakota, Oklahoma,
Rhode Island, South Carolina, Tennessee, Texas, Utah, Vermont, Virginia, West
Virginia. The state of
In ten states where registries
collect personal identifiers, TBI consumers are informed of available services
and/or receive case management. About half of those registries performing
follow-up activities involve state brain injury associations, often on a
contract basis.
There are some questions about the
reliability of registry data. In many states, a patient must be admitted to the
hospital for at least one night, and in some cases two, to trigger a reporting
requirement. In some states, death in the emergency department generates a
report while emergency department evaluation and release does not. Managed
care, with generally shortened treatment times, may result in a serious
under-reporting of mild and moderate TBIs.
Also at issue is the enforcement of
reporting requirements, particularly at smaller hospitals. Many registries are
so code dependent that errors or non-reporting of certain variables undermines
the representativeness of the data. As is to be
expected, inadequate resources and too few staff assigned to data compilation
and analysis is a problem in some states.
Last, but not least, is the
importance of follow-up contact. The devastating effects of brain injury on the
individual and his/her family is well documented; yet, only a third of states
with registries have a mechanism to reach out to people who’ve been injured.
The amount of time once devoted by acute care and rehabilitation professionals
to educating the individual and family as to community resources has been
squeezed to the bare minimum. This trend has been labeled as "empowering
families as case managers," but in fact, it is a means of "cutting
families loose" without sufficient information, resources, or supports.
BIA and its state affiliates have made a commitment to serve these individuals
and families, but too many of them are never even told we exist.
Despite the discrepancies and
problems with trauma registries, advocates and legislators have used the data
collected to initiate a multitude of public safety and public health initiatives
so their value should not be ignored.
States that are committed to
gathering and maintaining accurate statistics should consider the more
intricate injury surveillance systems promoted by the Centers of Disease
Control and Prevention. Starting in 1995, the CDC funded TBI surveillance
efforts in four states (
The CDC surveillance program extends
beyond the basic registry data to collect information about the outcomes
experienced by persons who survive traumatic brain injury. Outcomes include
impairments, disabilities (functional limitations), and handicaps (e.g., limits
in ability to return to full social participation including major roles such as
work or school); the occurrence of secondary conditions; and the need for and
use of post-acute medical, rehabilitation, and social services. Additionally,
surveillance systems seek to measure the number of persons with TBI who are not
hospitalized and to develop methods to collect outcome data among this group.
A better understanding of outcomes
is important because it adds to our knowledge about the public health impact
and societal costs associated with brain injuries. Outcomes also produce a
better understanding of specific impairments associated with disabling injuries
and can lead to improving acute care and rehabilitation interventions aimed at
reducing the severity of impairment and related disabilities. Last, but not
least, outcome data demonstrate barriers to receiving needed rehabilitation and
other health-related services following TBI.
Data collection methods vary among
the surveillance systems. All obtain mortality data from vital records or
multiple-cause-of-death data files. Data on hospitalizations for TBI are
obtained by several mechanisms: (1) employing legal reporting requirements for
central nervous system injuries similar to reporting requirements for
communicable diseases, (2) using existing hospital discharge data systems or
trauma registries, or (3) relying on a combination of these methods.
With the implementation of the TBI
Act of 1996, the CDC was charged with developing a uniform reporting system to
begin answering questions about the incidence and causes of TBI. Grants to
states are provided on a competitive basis to support or enhance existing
surveillance systems or population-based registries. (In 1998, grant
availability was announced in February, the application deadline was May, and
awards were made in August. Grants ranged from $125,000 to $380,000 depending
on project scope. A complete program description is available from the CDC, on
line at http://www.cdc.gov/ncipc/res-opps/headinjy.htm, or from your BIA State
Affairs Regional Director.
As of 1998, the CDC supported data
collection in 15 states (Alaska, Arizona, Arkansas, California, Colorado,
Louisiana, Maryland, Minnesota, Missouri, Nebraska, New York, Oklahoma, Rhode
Island, Utah and South Carolina). Eleven of the 15 states completed their first
year of funding in August 1998. Early feedback indicates there are considerable
differences among the participating states in:
- Maturity, availability, and organizational location of
data sources such as hospital discharge data
- Ability to link data sources
- Expertise and experience in data abstraction
- Institutional commitment, organizational location and
involvement of partners.
Because of these differences, the
CDC is in the early states of designing an evaluation program for surveillance
systems. The evaluation will encompass implementation, performance, and
usefulness of data collected. If the project is funded and approved, the CDC
will develop a model for use by all states.
For more information
contact:
Brain Injury Association, Inc.
703.236.6000 www.biausa.org
Creating a better future through brain injury
prevention, research, education and advocacy
(Posted: May 2000)