TUOAB Week 5 Information Technology & Data Driven Decision Making Discussion - Science
This week’s content presented information regarding benchmarks. Key terms and the steps involved in the benchmarking process were presented. Based on the information you reviewed answer the following discussion prompts.1. Discuss the importance of selecting a benchmark in relation to evaluating and presenting project outcomes. Use your own project (Implenetation of PHQ-9 in out-patient clinic) as an example.2. Identify appropriate benchmarks (internal and external) that could be used to evaluate the outcomes of your study. Why did you select those benchmarks? Are the benchmarks realistic? Mathematically plausible? (Hint: Review the intent of the EBP protocol). -Attached are two articles on benchmarking you can. Please include additional references as well
benchmarking_wk_5_dic.pdf
understanding_benchmarks.pdf
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REVIEW
URRENT
C
OPINION
Benchmarking to improve the quality of cystic
fibrosis care
Michael S. Schechter
Purpose of review
Benchmarking involves the ascertainment of healthcare programs with most favorable outcomes as a means
to identify and spread effective strategies for delivery of care. The recent interest in the development of
patient registries for patients with cystic fibrosis (CF) has been fueled in part by an interest in using them to
facilitate benchmarking. This review summarizes reports of how benchmarking has been operationalized in
attempts to improve CF care.
Recent findings
Although certain goals of benchmarking can be accomplished with an exclusive focus on registry data
analysis, benchmarking programs in Germany and the United States have supplemented these data
analyses with exploratory interactions and discussions to better understand successful approaches to care
and encourage their spread throughout the care network.
Summary
Benchmarking allows the discovery and facilitates the spread of effective approaches to care. It provides a
pragmatic alternative to traditional research methods such as randomized controlled trials, providing
insights into methods that optimize delivery of care and allowing judgments about the relative effectiveness
of different therapeutic approaches.
Keywords
benchmarking, comparative effectiveness, cystic fibrosis, disease registry, quality improvement
INTRODUCTION
Treatment advances have dramatically improved
cystic fibrosis (CF) morbidity and mortality over
the last several decades, changing the face of the
disease in a relatively short period of time [1].
Although a number of novel medications for the
treatment of CF have been introduced, experience
in the healthcare system at large shows that availability of new discoveries is not enough to ensure
that they are delivered to the patients who may
benefit from them [2]. A perusal of the United States
CF Foundation Patient Registry [1] as well as other
national CF registries [3,4 ,5] from around the
world clearly demonstrates unwarranted and excessive variation in the use of healthcare interventions
and disease outcomes in CF care.
An essential first step to improving the quality
of clinical care is to establish what therapeutic
approaches clearly add value. Although efficacy
may be best proven through the use of randomized
clinical trials, it may not be feasible to perform
adequately powered clinical trials to test every
possible nuance regarding CF treatment, and
efficacy does not necessarily translate into realworld effectiveness [6]. An interest in determining
effectiveness has led to an increased appreciation of
the usefulness of observational databases to learn
about therapeutic approaches that work under usual
clinical circumstances. There are significant pitfalls
that must be avoided in analyzing patient registries
to ascertain what treatments optimize outcomes [7],
but theoretical advances are being made in learning
how best to use them [8]. Broadly speaking, the use
of registries for benchmarking can be seen as a form
of comparative effectiveness research.
&&
www.co-pulmonarymedicine.com
Emory University School of Medicine, Rollins School of Public Health,
Children’s Healthcare of Atlanta, Atlanta, Georgia, USA
Correspondence to Michael S. Schechter, MD, MPH, Emory University
School of Medicine, Rollins School of Public Health, Children’s Healthcare of Atlanta, Atlanta, GA 30322, USA. Tel: +1 404 727 0710; e-mail:
msschec@emory.edu
Curr Opin Pulm Med 2012, 18:596–601
DOI:10.1097/MCP.0b013e328358d533
Volume 18 Number 6 November 2012
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Benchmarking to improve cystic fibrosis care Schechter
KEY POINTS
The existence of well established patient registries in CF
offers the opportunity to use benchmarking to identify
and spread effective strategies for treating patients
with CF.
A number of potential pitfalls complicate attempts to
ascertain best practice; nuances in the way outcomes
are chosen and compared may significantly
alter conclusions.
Registry analyses that have assessed practice patterns
that distinguish CF centers with better disease outcomes
have suggested that successful centers monitor their
patients more closely and use more intravenous
antibiotics.
The United States CF Foundation benchmarking
initiative assembled teams that visited high performing
centers and found these centers to be characterized by
strong teamwork, high expectations and proactive care,
and patient/family engagement.
Once methodological barriers are overcome, the
emerging development of CF registries worldwide will
provide unprecedented opportunities to broaden
comparisons and enable opportunities for sharing
effective approaches to care across the
international arena.
WHAT IS BENCHMARKING?
Benchmarking is the process of ascertaining best
practice with the intention of identifying and
spreading effective strategies for delivery of care.
One of the advantages of a well constructed patient
registry is the opportunity it offers to compare practice patterns and outcomes across care sites. The
existence of variation suggests differences in the
efficiency of delivery of care, and offers the opportunity to gain knowledge of the level of success that
may be obtained with current available therapies.
Once high-performing care sites are identified, the
next step is to attempt to determine how their
excellence was achieved. Benchmarking originated
as a business tool but has recently become recognized as an effective method for discovering and
disseminating effective healthcare practices [9]. The
rationale is that institutions with excellent clinical
outcomes have developed and utilize clinical
approaches that may be adopted by programs seeking to improve their own outcomes. The examination of disease registry data to identify ‘best’ care
centers and the care processes underlying their success is a starting point for benchmarking and
appears particularly promising when making international comparisons [10 ]. In the United States,
the CF Foundation (CFF) has supported a
&&
benchmarking program that used registry data to
identify clinically excellent CF centers and then
study their structural and cultural organizational
features in addition to specific practices that contribute to their outcomes [11,12]. The German
benchmarking program also started with registry
data and then obtained an enriched understanding
of successful therapeutic approaches through group
presentations and discussions [4 ]. No matter how
it is operationalized, the underlying principle is that
the practices and/or characteristics identified at
high performing centers are drivers (and not just
markers) of outcomes that can be transplanted to
other centers [13].
&&
A BRIEF HISTORY AND CATALOG OF
CYSTIC FIBROSIS REGISTRIES
A national patient registry containing demographic
and clinical data on patients attending accredited
care centers in the United States was begun by the
CFF in the mid-1960s and used primarily for descriptive purposes. In the 1990s, epidemiologists began
to appreciate the usefulness of the registry to evaluate risk factors for disease progression. However,
comparisons of outcomes among care centers were
deemphasized and not a focus. The Epidemiologic
Study of Cystic Fibrosis (ESCF) began in 1993 as an
industry-sponsored phase IV study of dornase alfa
embedded in a multicenter, longitudinal, observational study that collected clinical, therapeutic,
microbiologic, and lung function data from CF
treatment sites in the United States and Canada
[14]. ESCF actually began the trend of showing
comparisons of center-based process and outcome
data to care centers on an individual basis, but this
was not broadly publicized. In 1999, CFF national
registry reports started to report center-specific data
on care processes and disease outcomes, highlighting for the first time in its public reports the existence of significant variation across the network. In
2003, the registry moved to PortCF, an Internet webbased portal, allowing more complete encounterbased patient data entry.
The Canadian Cystic Fibrosis Patient Data
Registry, or CPDR, has been in existence since the
early 1970s as a means to monitor important statistical trends in the Canadian CF population [15].
Although it tracks many of the same outcomes and
characteristics as the US Registry, its reports emphasize overall population trends and do not feature
center-specific data.
In Europe, national registries exist in a number
of countries, the largest of which include Italy,
France, Germany, and the UK [16 ]. Initial discussions regarding a Pan-European Registry were held
1070-5287 ß 2012 Wolters Kluwer Health | Lippincott Williams & Wilkins
&
www.co-pulmonarymedicine.com
597
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Cystic fibrosis
around 1995 but not pursued, and a data registry
analogous to ESCF was hosted by Roche for several
years, but then closed. In 2006, a Europe-wide
registry was begun, sponsored by the European
Coordination Action for Research in Cystic Fibrosis
(EuroCareCF). The primary aim of this registry is
to collect and compare demographic data across
participating countries. Clinical data collection is
a secondary goal at this time. At the moment, the
registry collects data mainly from national CF
registries, but a pilot study is being carried out for
countries without a national registry, for which
specially developed data-entry software is provided
[17].
In 1998, Cystic Fibrosis Australia (CFA) supported the development of a data registry in
Australia and New Zealand to allow measurement
of the demographics, morbidity, and mortality of
the CF population. Since 2005, data entry has been
web-based. Centers submit either annual information or information for each patient visit [5].
PITFALLS IN THE USE OF REGISTRIES TO
COMPARE CLINICAL PERFORMANCE
A number of potential pitfalls complicate attempts
to ascertain best practice; nuances in the way outcomes are chosen and compared may significantly
alter conclusions. This has made international comparisons particularly challenging. CF registries in
different countries have made reasonable but arbitrary and often disparate decisions regarding how
data are collected and how various clinical measures
are calculated. For example, the US CFF Registry
calculates lung function on an annual basis by
averaging the best forced expiratory volume in 1 s
(FEV)1\% predicted measured in each quarter; other
countries may just obtain one measurement per year
[10 ]. Even when making comparisons within the
same country using the same registry, there are
significant challenges. For example, there is a host
of ways of calculating best performance, and they do
not lead to the same conclusions. Centers that are
best at attaining one outcome (e.g., lung function)
are not necessarily the best at attaining another
(e.g., optimal nutrition). Furthermore, pediatric programs with the best average FEV1 in children 6–12
are not necessarily the same as those with the best
average FEV1 in 13–18-year-olds, and these do not
co-exist within the same center with adult programs
with the best FEV1 in adults. Similarly, for nutrition,
setting aside controversies regarding the best single
measure of nutritional status [18], programs whose
patients have the highest average BMI are not
necessarily the same as those that are most successful in minimizing the percentage of patients below a
&&
598
www.co-pulmonarymedicine.com
cut point such as 10th percentile for BMI. Finally,
centers that have shown a recent rapid improvement
in the outcome of interest may have accomplished
this differently from those that have shown consistent and stable excellence over a period of years.
There are a number of other considerations in
attempting to determine which centers to use as
benchmark centers of excellence. Good care practices that improve survivorship of end-stage patients
will bring down a program’s average FEV1, as will
the presence of an active lung transplant program
that draws more end-stage patients. These are of
particular relevance in determining optimal outcomes of adult care. Comparisons of adult programs
are also complicated by the fact that their feeder
pediatric programs determine baseline disease status
as well as the attitudes and education of patients
when they transition to adult care. Similarly,
pediatric programs’ outcomes may be affected if
they have a disproportionate number of infants
diagnosed by newborn screening. It is important
to consider case-mix adjustment to control for disproportionate distribution of sociodemographic
and disease-specific risk factors at some programs
[19] and locations [20 ,21 ], even though this may
introduce new biases into the comparison [22].
&
&&
THE USE OF REGISTRY ANALYSES TO
BENCHMARK CARE PROCESSES AND
OUTCOMES
It has been suggested that the creation of the US CFF
National Patient Registry was motivated by the
desire to encourage the spread of a comprehensive
treatment program for CF care by showing improved
survival at centers that had adopted this model of
care [23], but the presentation of center-specific
processes and outcomes did not begin until the late
1990s. With the development of the CFF Quality
Initiative, displays demonstrating the range of
center-specific variations in outcomes and care
processes became a central feature of US Registry
reports. Yearly reports [1] are published privately by
the CF Foundation rather than in peer-reviewed
journals. The German and Australian registries also
provide center-specific data in their reports.
Corey et al. [24] performed what was probably
the first benchmarking comparison of practice patterns and outcomes in CF, contrasting nutritional
indices and survival in Boston vs. Toronto between
1972 and 1981. This classic study was instrumental
in changing nutritional practice in CF by drawing
attention to the superior outcomes obtained in
Toronto, where the traditional restriction of dietary
fat had been replaced by an alternative approach
encouraging high-fat and high-calorie feedings.
Volume 18 Number 6 November 2012
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Benchmarking to improve cystic fibrosis care Schechter
More than a decade later, two analyses of the
ESCF registry identified care sites with lung function
in the highest quartile and compared care practices
at these sites with those at sites in the lowest quartile. The landmark study by Johnson et al. [25]
reported that high quartile sites performed more
clinic visits, spirometry, and airway cultures across
all age groups. High quartile sites also prescribed
more dornase alfa in adults, more and longer courses
of intravenous antibiotics, nonquinolone antibiotics and inhaled corticosteroids in adults and
teens, and more inhaled antibiotics in young children. A later study that focused on the care of young
children found that ESCF sites in the highest quartile for lung function in 6–8 year-olds performed
more airway cultures in their 0–3-year-old patients
and maintained better weight-for-age and heightfor-age and less cough in their patients in the 0–3
age range [26].
Several attempts at international comparisons of
practices and outcomes have been made, with varying success due to the challenges alluded to earlier
such as inconsistent definition of clinical measures
and data collection as well as differential ascertainment and enrollment [3,10 ,27–29]. These efforts
represent important first steps, but until the validity
of these comparisons across different platforms and
infrastructures can be verified, it will be difficult to
draw firm conclusions and deduce best practice
from them.
&&
MOVING BEYOND THE REGISTRY DATA
The German CF Quality Assurance project has
specifically aimed at developing clinical goals for
its participating centers based upon benchmarks
derived from registry data [4 ,30,31 ]. Quality
indicators were selected (airway cultures free of
Pseudomonas aeruginosa, nutritional measures, lung
function, and lack of serious complications) [32] and
care centers were ranked according to their performance on these indicators [30]. During two annual
conferences, the highest-ranking centers presented
their treatment strategies and the ensuing discussions led to the identification of the clinical
practices that centers would aspire to adopt. These
practices centered primarily on early and aggressive
treatment of infections with P. aeruginosa and
intensification of nutritional interventions [4 ].
Actual improvement in outcomes among the
participating centers has been variable, but the
underlying concept is now being disseminated
throughout the German CF care network [4 ].
One additional consequence of these efforts has
been to heighten awareness by the clinicians of
the importance of providing reliable data in order
&&
&
to make valid comparisons, and this has increased
efforts to optimize and standardize data collection
and reporting [4 ,31 ].
In the United States, the CFF has sponsored a
benchmarking project that attempted to discover
characteristics and practice patterns of successful
centers beyond those that could be ascertained by
a perusal of registry data alone [11,33]. Ten separate
pediatric and adult programs were chosen to be
benchmarked based upon high performance in
either pulmonary or nutritional outcomes.
Attempts were made to select programs of different
sizes from diverse geographic locations that had
demonstrated a 5-year trend of excellence in casemix adjusted outcomes. Although some programs
had both pulmonary and nutritional outcomes in
the top quintiles, more tended to excel in one area
and not the other. Similarly, there was only a small
amount of overlap of centers that were visited for
both pediatric and adult benchmarking.
Benchmarking visits were made by a multidisciplinary core team of CF experts with training and
knowledge of systems-oriented approaches to care,
and the team partnered with volunteer teams from
CF care programs that were interested in learning
novel and successful methods to improve care.
The benchmarking visits were structured around
comparisons between the visiting and host centers’
practices, procedures, and performance and used a
qualitative investigative approach to search out
novel paradigms and generate new hypotheses
regarding how to provide best care. Benchmarking
visits generally lasted 24 h and began with a preclinic dialogue comparing the two programs’ treatment philosophy and approaches to care and
included a perusal and discussion of the centers’
registry reports. The teams focused upon differences, their rationale, and their apparent consequences. This discussion would typically lead to
the development of hypotheses regarding practice
differences and set a framework for observations
in clinic. During clinic, team members paired by
discipline to observe and discuss. When possible,
visitors sat in host team meetings to observe the
planning of care and interactions among team
members. Several ‘signature themes’ [11] that were
noted at both the pediatric and adult program visits
are as follows:
&&
&
&&
&&
(1) the presence of a well functioning care team
working with a well thought-out systematic
approach to providing consistent care;
(2) high expectations for outcomes among providers and families;
(3) early and aggressive management, avoiding
reliance on ‘rescues’; and
1070-5287 ß 2012 Wolters Kluwer Health | Lippincott Williams & Wilkins
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Cystic fibrosis
(4) patients/families that are engaged, empowered,
and well informed on disease managemen ...
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