The
Colorado Stroke Registry
Don
B. Smith, M.D. and Richard L. Hughes, M.D.
Overview
Stroke is common, tragic and expensive. It is within our capability
to lessen the burden of stroke for all Coloradans. In fact, there are
few areas in medicine where the opportunity for progress is so great,
but little progress is being made. Closing the gap—between where
we are now and where we wish to be—requires a mechanism for working
together to promote systematic quality improvement. The Colorado Stroke
Registry (CSR) will be an important component of that mechanism. In
the remarks below, we will summarize the Registry’s development
to date and our view of its future.
Introduction
and Background
Stroke imperils life, mobility, communication, employment, and even
one’s sense of self. Few survivors escape without lasting scars.
Stroke is our primary cause of long term disability and the third leading
cause of death. Although it hasn’t been estimated recently, the
cost of stroke more than a decade ago was said to be more than $40 billion,
with the average lifetime per person cost of a first stroke coming to
more than $100,000.(1)
Encouraging
medical advances have been achieved in recent years. The cause of stroke
is understood. Effective treatments are available. Risk factors are
well known, and altering risks can prevent strokes. Why then does stroke
remain common, tragic and expensive?
This
gap between what we actually do and what we could achieve is not unique
to stroke. The Institute of Medicine has pointed out that the gap is
present throughout our medical system.(2)
It is estimated that actual practice conforms with best achievable practice
only about half the time. This realization, combined with knowledge
of unacceptable disparities in the delivery of quality care and an uncomfortably
high frequency of medical errors, has led to call for a transformation
of our present system of care.(3)
The
creation of higher quality, more equitable, safer, and more efficient
systems is a goal with which few would disagree. But, systems of care,
like other complex dynamic systems, are not easy to program. Tinkering
with them can lead to large and negative unintended consequences. Perhaps
this partly explains medicine’s slowness in entering the age of
assessment and accountability that has been heralded for more than two
decades.
The
current system of stroke care is inadequate. It is too sluggish, too
fragmented, and too inconsistent to treat stroke effectively.(4)
Given the widespread availability of computerized data tracking and
analysis, it is becoming possible to see in nearly real time how adjustments
to a medical system affect the system’s performance. With this
sort of feedback, institutions and care providers are becoming more
confident of their ability to tune their systems on the fly, without
crashing. Continuous quality improvement is on the verge of becoming
a reality, not just a slogan.
The
CSR is a part of a broader quality improvement (QI) movement in medicine.
It will provide the data that will inform the effort to improve stroke
care throughout our state. Nationally, accumulating evidence affirms
the value of a broad QI approach. For example, the Institute for Healthcare
Improvement recently announced that more than 122,000 lives had been
saved over an 18 month period, during which hospitals undertook an unprecedented
campaign of internal QI in the areas of infection control, medication-error
prevention, and management of cardiac/critical care patients.(5)
Furthermore, adherence to recommended process has been shown
to result in improved survival rates for heart attack patients.(6)
The
Origin and Current Status of the CSR
In recognition of the importance of stroke—and of the gap between
potential and practice—the Colorado Legislature created the Colorado
Stroke Advisory Board (CSAB) in 2002. Board members were recruited by
public announcement and were selected from a variety of disciplines
by the executive director of the Colorado Department of Public Health
and Environment. Their mandate was to examine and report on the problem
of stroke as it exists in Colorado. This report was issued in October
of 2003.(7)
The
report noted the lack of a statewide feedback mechanism for decision
making about QI (quality improvement) for stroke. Among the report’s
recommendations were that Colorado should establish a stroke registry,
“for the purpose of guiding recommendations to facilitate continuous
quality improvement of stroke care in Colorado.”
The
report’s recommendations were unfunded until 2006, when a three-year
grant was awarded for a pilot statewide stroke registry. Funding came
from the Amendment 35 tobacco tax increase. Although the CSAB mandate
ended with the publication of the 2003 report, some original members
of the board continued to serve, joined by other volunteers concerned
about the problem of stroke, in a reconstituted CSAB. This new board
was brought under the umbrella of the Colorado Cardiovascular Disease
& Stroke Prevention Program, a volunteer group endorsed by the Department
of Public Health and Environment. Currently more than 20 organizations
are represented in the new CSAB. Membership is open to all Colorado
stake-holders in stroke.
The
CSAB and CSR are unique projects. Unlike other initiatives, they are
not state-mandated, regulation-driven projects. Rather, they are bottom-up,
grassroots undertakings. The database for the registry is Get-With-The-Guidelines,
a quality improvement tool from the American Stroke Association (ASA)
that is widely used by hospitals across the country. In addition to
giving ready access to best-practice guidelines, the tool allows institutions
to compare their adherence to recommended quality indicators with national
benchmarks.
The
CSR is the nation’s first “superuser” of Get-With-The-Guidelines,
with access to patient level data across all participating hospitals
in Colorado. To allay concerns about privacy and competitiveness, the
data supplied to the CSR is de-identified for individual patients and
for treating hospitals. We are able see a global picture of stroke in
Colorado, but no hospital is able to use the data for competitive advantage.
As we discover deficiencies in care, we will work through the ASA to
encourage individual hospitals to see how they can improve quality in
the identified areas.
The
initial focus of the CSR is on the use of clot-dissolving agents in
acute stroke. These agents have the potential to completely reverse
the ill effects of a stroke, if given quickly to appropriate patients.
Yet, in its 2003 report the CSAB found that their use in Colorado was
very low, only about 1%—about half the national average at that
time.
Effective
use of clot-dissolving agents depends on a high level of public awareness,
rapid transport to a hospital, prompt evaluation, and judicious selection
of candidates for treatment. We aim to understand Colorado’s performance
in this area by tracking several key variables: time from onset of symptoms
to hospital arrival; the percentage of stroke patients given clot-dissolving
treatment; the incidence of complications and the outcome of care (discharge
destination) for those so treated.
The
Future of the CSR
In years two and three of this pilot registry, we will examine and work
to improve adherence to consensus quality indicators for stroke treatment
and prevention. Funding for the CSR is guaranteed only until mid 2008.
It is the hope of the CSAB that the Registry will have shown sufficient
merit by then that funding will continue, but that remains to be seen.
It
is the belief of many on the CSAB that over the long term, the volunteer
status of the CSAB membership could prove to be a handicap. It might
legitimately be asked, “By what authority does the CSAB assume
the role of overseer, analyst, and QI coordinator concerning statewide
issues in stroke?” Authority and accountability for system-reform
initiatives will likely need to be incorporated into existing public
health structures, perhaps via an appointed board, acting with the Colorado
Department of Public Health and Environment. Further legislative action
by the state will likely be necessary for this to come to pass.
A
model for the CSR is NRMI, the National Registry of Myocardial Infarction,
a registry that gathers information about treatment of heart attack.
In so doing, NRMI is thought to have contributed to a dramatic reduction
in mortality from coronary heart disease.(8)
Summary
It has been said that, “Building stroke systems throughout the
United States is the critical next step in improving patient outcomes
in the prevention, treatment, and rehabilitation of stroke. The current
fragmented approach to stroke care in most regions of the United States
provides inadequate linkages and coordination among the fundamental
components of stroke care. Providers and policymakers at the local,
state, and national levels can make significant contributions to reducing
the devastating effects of stroke by working to promote coordinated
systems that improve patient care.”(4)
We
in the “stroke community” recognize that stroke care can be
improved by better use of the knowledge and tools that are currently
at our disposal. Getting from where we are to where we wish to be is
not so much a technological problem as it is a sociological one.
Stroke
is a complex condition with many variations. Stroke care involves many
health care providers across a range of disciplines. Competition for
stroke “business” is keen among institutions, providers, professional
associations, government agencies, and nonprofit organizations. Long
established patterns of referral and outmoded ideas about stroke retard
innovation in the delivery of stroke care. Corralling these elements
in a cooperating, efficient, and effective system is a challenge, but
the CSR is an important tool in the work to meet that challenge.
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