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D
Sources and Uses of Data
Within the Centers for Medicare
and Medicaid Services
A
lthough it is clear that data collection and dissemination within the
Centers for Medicare and Medicaid Services (CMS) will acceler-
ate rapidly in the coming years, CMS already holds vast amounts
of information, much of which can be accessed by appropriate outside
organizations. This appendix briefly reviews some of the current sources
of data within CMS and some of the details of data related to improve -
ment of the quality of care, along with discussion of some of the external,
secondary uses of these data. The emphasis is largely on the data collected
with respect to Medicare.
DATA SOURCES AND STRUCTURE
The data held currently by CMS come from a variety of sources, of
which the most important is claims for all types of services provided.
All claims contain basic diagnostic information, as well as information
on date of service, the type of service provided, and the identity of the
prescribing physician. Some types of data, such as hospital discharges,
include multiple diagnoses, as well as a record of procedures performed,
diagnosis-related group (DRG) assigned, and other information on the
hospital stay. Managed-care plans serving Medicare beneficiaries (Part C
of Medicare) are required to submit extensive “benefit utilization” reports,
which provide encounter data for these beneficiaries very similar to data
from claims submitted on behalf of those in fee-for-service Medicare.
146
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APPENDIX D
This information is merged into the fee-for-service data sets to generate a
comprehensive view of facts such as hospital discharges.
Part D of Medicare is administered by pharmacy benefit organiza-
tions that pay the claims rather than CMS’s doing so directly. Part D
providers are required to submit detailed reports of the drugs prescribed
as well as identifying the prescriber and the pharmacy where each pre-
scription is filled.
Special supplemental information aimed at both monitoring quality
and assigning patients to payment groups is collected on nursing home
patients (the Minimum Data Set, or MDS), home health patients (the Out -
come and Assessment Information Set, or OASIS), patients in rehabilita-
tion facilities (Inpatient Rehabilitation Facility-Patient Assessment Instru-
ment, or IRF-PAI), and those in psychiatric facilities (Inpatient Psychiatric
Facility Prospective Payment System, or IPF PPS).
Quality information is collected from surveys done by the Joint Com -
mission and state agencies and entered into the Online Survey Certifica -
tion and Reporting (OSCAR) database. Since 2007, hospitals are required
to report “never events,” adverse outcomes that ought not to have hap -
pened (such as wrong-site surgery), as defined by the National Quality
Forum. Payment is withheld for the hospital stays during which such
events occur. Additional quality reporting is also required. The amount
of reporting is expected to increase as electronic medical records (EMRs)
come into common use; ease of reporting should improve as well. Phy -
sicians are not required to submit quality information but have been
encouraged to do so under a voluntary plan that can lead to incentive
payments. Physicians’ quality reports are based on measures developed
by the National Quality Forum. End-stage renal disease facilities report
patient outcome measures into a system known as CROWNWeb, for Con-
solidated Renal Operations in a Web-enabled Network.
CMS also conducts a number of beneficiary surveys. The Medicare
Current Beneficiary Survey (MCBS) is a rolling survey of beneficiaries that
includes questions on out-of-pocket costs, services used, and the experi -
ence of care. The Health Outcomes Survey (HOS) measures outcomes
for individuals enrolled in Medicare managed care. A survey specific to
patients’ experience of hospital care—Hospital Consumer Assessment of
Healthcare Providers and Systems (HCAHPS)—is also conducted.
Demographic information on beneficiaries, including race and ethnic-
ity data, is provided to CMS by the Social Security Administration (SSA).
According to recent reports, race and ethnicity information are now being
collected using OMB standards when new Social Security and Supple-
mental Security Income claims are filed, and when applications are made
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148 STRATEGIES AND PRIORITIES FOR INFORMATION TECHNOLOGY AT CMS
for Social Security numbers and replacement cards. However, until 1980 1
very limited data on race and ethnicity (white, black, or “other”) were
collected at the time of enrollment. While the categories have expanded
since then, data available for Hispanic/Latino and Asian beneficiaries
remain of limited accuracy despite efforts to repopulate SSA data received
through focused outreach efforts, arrangements with the Indian Health
Service and the collection of self-reported data through the Medicare Cur-
rent Beneficiary Survey.2
As a result, accurate demographic information is often lacking on
Medicare beneficiaries, posing a challenge in terms of identifying and
reducing racial disparities in health and treatment. Demographic infor-
mation on Medicaid beneficiaries is collected by states under a variety of
rules.
Information on providers and institutions participating in the Medi -
care program, including information on the ethnicity of providers, is col -
lected at the time of request for a Medicare number.
The new reporting rules for meaningful use of electronic health
records (EHRs) should yield substantial new data that can easily be
accessed, but the exact specifications for the information to be generated
are not yet determined.
CMS also collects and retains extensive cost information based on
regular reports submitted by participating facilities.
The Office of Research, Development, and Information (ORDI) in
CMS is responsible for coordinating the agency’s research. ORDI conducts
research projects such as those that have served as the basis for the design
of the new accountable care organizations. The data sets collected in the
process of research are usually held by ORDI until the demonstration is
complete and analysis has been concluded.
CMS also maintains a number of data sets related to Medicaid. The
Medicaid Analytic Extract (MAX) files track utilization and enrollment
data at the person level on an annual basis. This data set, according
to CMS, is used to support research and policy analysis for Medicaid
and other low-income populations. The Medicaid Drug Rebate Product
Description file is a catalog listing of all pharmaceuticals that qualify for
drug manufacturer rebates to states under the Medicaid Drug Rebate
Initiative (MDRI) (part of the Omnibus Budget Reconciliation Act of 1990
1 Joel S. Weissman and Romana Hasnain-Wynia, 2011, “Advancing Health Care Equity
Through Improved Data Collection,” New England Journal of Medicine 364:2276-2277.
2 RTI International, 2008, “Creation of New Race-Ethnicity Codes and Socioeconomic Sta -
tus (SES) Indicators for Medicare Beneficiaries” available at http://www.ahrq.gov/qual/
medicareindicators/, last accessed October 24, 2011; AHRQ “Race, Ethnicity, and Language
Data: Standardization for Health Care Quality Improvement,” available at http://www.
ahrq.gov/research/iomracereport/reldata3b.htm, last accessed October 25, 2011.
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APPENDIX D
[Public Law 101-508]). This file is updated and maintained by CMS on a
quarterly basis. Supplementing the MDRI is the Medicaid Drug Rebate
Utilization file, which captures drug utilization and vendor payments
data submitted to CMS by the states in order to calculate state reimburse -
ment amounts.
The Payment Error Rate Measurement is an annual compilation of
error rates in payments to states for Medicaid and the Children’s Health
Insurance Program (CHIP) services.
CMS’s Central Data Administration team is the primary custodian of
most CMS data. Quality reporting and support of the quality databases
are the responsibility of the Office of Clinical Standards and Quality.
According to CMS, the process of data administration itself consists of
the following:
• Guiding the creation and monitoring the usage of data and infor-
mation as vital agency assets;
• Promulgating agency standards, procedures, and guidelines
related to data names and definitions;
• Maintaining the inventory of agency data assets;
• Facilitating understanding of the meaning, accuracy, and timeli-
ness of data assets; and
• Promoting the reuse of standardized data names, definitions, ele-
ments, and values.
A few CMS databases are readily available to the public; many are
available to researchers, with appropriate restrictions related to the pri -
vacy of individuals; and a few, most notably those collected by qual -
ity improvement organizations (QIOs) for their improvement work, are
never available for secondary use. In order to facilitate effective outside
use of CMS data, CMS has contracted with the University of Minnesota
to create the Research Data Assistance Center (ResDAC). ResDAC pro -
vides free assistance to researchers interested in using Medicare data for
their research; it maintains a comprehensive list of the data sets available
and when the next update is expected. All requests must be reviewed by
ResDAC prior to submission to CMS; this requirement reduces rework
by inexperienced researchers and ensures an efficient process for review.
For users who require more consistent access to CMS data, such as
government and state agencies and providers, an active CMS Data Use
Agreement can be established, stipulating the manner and time frame
in which the data are to be used. Interested external data customers and
stakeholders that may wish access to data include the following: academic
institutions and the private sector, congressional entities, Department of
Health and Human Services (HHS) federal agencies and contractors, non-
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150 STRATEGIES AND PRIORITIES FOR INFORMATION TECHNOLOGY AT CMS
HHS federal agencies, providers, state government agencies, and state
Medicaid agencies.
CMS organizes its data sets with different levels of specificity and
beneficiary personal information in order to facilitate research. Data are
maintained in identifiable data files, which contain actual beneficiary-
specific and physician-specific information, such as per year person-level
enrollment and utilization. Accessing this class of data requires autho -
rization from CMS and is subject to Health Insurance Portability and
Accountability Act (HIPAA; Public Law 104-191) protections. Limited
data files are files that have been stripped of data elements that might per-
mit the identification of beneficiaries but which include beneficiary-level
health information. Accessing this class of data also requires authorization
from CMS and is also subject to HIPAA protections. Non-identifiable data
files and public use files are accessible to the public and are not subject to
CMS authorization or HIPAA protections, as they have been stripped of
all individual-identifying information. Cost report data coming from all
Medicare program providers is provided on an annual basis and contain
information on costs, statistics, and facility characteristics. Medical review
data refer to a number of quality-of-care assessment reports by facility
such as the MDS. This information includes personal-level specific data
on facility residents and other topics, and accessing it is subject to CMS
authorization and HIPAA protections.
Demonstration data on “the likely impact of new methods of service
delivery, coverage of new types of service, and new payment approaches
on beneficiaries, providers, health plans, states, and the Medicare Trust
Funds,”3 as well as CMS’s evaluation projects data validating research
and providing useful information for monitoring CMS’s various pro-
grams, may contain identifiable, limited-information, and/or non-identi -
fying information. Accessing demonstration data may or may not warrant
CMS approval or HIPAA protections, depending on the data collected.
Consumer assessment data such as those collected in the MCBS and the
HOS are in the form of survey responses from beneficiaries as consum-
ers on the interpersonal aspects of health care. Some are available with
CMS approval, and some are fully de-identified and are available without
special approval.
DATA-CENTRIC EFFORTS TOWARD QUALITY IMPROVEMENT
A regulatory and payment agency like CMS has two potential
approaches to improving the quality of care: (1) it can establish standards
aimed at eliminating the worst care, and (2) it can encourage, in some
3 As described at the CMS website, https://www.cms.gov/DemonstrProjectsEvalRepts/.
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APPENDIX D
manner, overall improvement. If quality is viewed as a normal curve, the
first can be seen as limiting the length of the left tail, whereas the second
involves shifting the entire curve to the right. Despite a popular focus on
“getting the bad guys,” overall improvement can have a much greater
effect on more individuals.
Conditions of Participation
Since passage in 1965 of the legislation creating Medicare (Public Law
89-97), CMS, or its predecessor agencies, have had responsibility for moni-
toring the quality of care in part of the health care system. The focus of
the original law was exclusively on establishing minimum standards for
institutional providers, particularly hospitals and nursing homes. Regula-
tory standards, known as “Conditions of Participation,” were developed,
and physical surveys were conducted to ensure that standards were met.
These surveys are conducted by state agencies and, in many instances, by
private accrediting agencies whose standards are deemed to be equal to or
better than those of the Conditions of Participation. The only accrediting
agency mentioned in the original law and used in the early years was the
Joint Commission on Accreditation of Hospitals (now the Joint Commis -
sion on Accreditation of Healthcare Organizations); more recently other
agencies have also qualified for “deemed” status.
Whoever conducts the survey, the core question is straightforward: Is
care good enough for CMS beneficiaries? In theory, CMS can act to with-
draw all payments if care is substandard; in practice, it has proved very
difficult to de-certify a whole institution, even one with serious problems.
Although the Conditions of Participation have attempted to improve
overall care by means such as requiring quality improvement committees,
there is little evidence that this approach makes a difference.
In recent years, CMS has moved, even within the context of the Con -
ditions of Participation, to deal with substandard care in a more precise
manner on the basis of objective data. Facilities are now required to report
to CMS a list of “never events,” and payment is denied whenever these
occur.
Quality Improvement Organizations and Predecessor Organizations
The first effort to use data sets to improve care came with the creation
of professional standards review organizations (PSROs) in 1972; these
physician-run organizations, each of which covered a state or smaller
area, had access to Medicare claims data and were expected both to
reduce overuse of services and to improve quality. Evaluations of the
program, and interest from Congress, focused almost exclusively on
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152 STRATEGIES AND PRIORITIES FOR INFORMATION TECHNOLOGY AT CMS
whether or not the PSROs were saving money, with little attention to the
matter of quality. In the 1980s, the PRSO program was eliminated, and
new entities—professional review organizations (PROs)—were created,
with more of a focus on quality. The new law allowed more flexibility in
terms of what kinds of organizations could qualify to perform reviews
and what areas they would cover. Tasks to be carried out included not
only data-based efforts to improve care but also a number of less relevant
activities such as the investigation of patient complaints. The name PRO
was changed to QIO in 2002 to emphasize further the focus on improving
population-based measures of health, but the conflicting tasks remain.
A study by the Institute of Medicine (IOM) completed in 2006 argued
for even more focused tasks for the QIOs. It is not clear how fully those
recommendations have been followed. The conclusions of the IOM study
were as follows:
• The quality of the health care received by Medicare beneficiaries
has improved over time.
• The existing evidence is inadequate to determine the extent to
which the QIO program has contributed directly to those improvements.
• The QIO program provides a potentially valuable nationwide
infrastructure dedicated to promoting quality health care.
• The value of the program could be enhanced through the use
of strategies designed to focus the QIOs’ attention on the provision of
technical assistance in support of quality improvement, to broaden their
governance base and structure, and to improve CMS’s management of
related data systems and program evaluations.4
EXTERNAL SECONDARY USES OF CMS DATA
The various data sets described here, particularly those produced by
Medicare, have served as a rich base for health services research in the
United States. Among current researchers, the best known is probably the
Dartmouth Atlas of Health Care,5 which began with studies of variation
in hospital use and now reports on a wide variety of issues such as the
number of individuals who see 10 or more doctors in the last 6 months
of life. The Dartmouth files have been maintained continuously for 20
years, and so patterns of use can be traced back over time. The original
research that led to the development of DRGs was also conducted by
4 Institute of Medicine, 2006, Medicare’s Quality Improvement Organization Program: Maximiz-
ing Potential, Washington, D.C.: The National Academies Press, p. 4.
5 “The Dartmouth Atlas of Health Care,” website, available at http://www.dartmouthatlas.
org/, last accessed July 21, 2011.
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APPENDIX D
outside researchers using Medicare Provider Analysis and Review (MED-
PAR) data. The DRG system, which was originally intended to facilitate
utilization reviews by identifying aberrant cases, or outliers, was first
reported 35 years ago6 and first used as a payment mechanism in New
Jersey in 1980.
The information available today is much richer than that available
when the Dartmouth Atlas first appeared, and research interest continues
to grow. The value of CMS data is limited by the fact that they reflect only
care delivered to Medicare and to a certain extent Medicaid beneficiaries.
The availability of more universal data will serve to enhance greatly the
understanding of the functioning of the U.S. health care system.
6 John D. Thompson, Robert B. Fetter, and Charles D. Mross, 1975, “Case Mix and Resource
Use,” Inquiry 12(4):300-312.
