HI300 Unit 6 Secondary Data Sources - DiscussionSecondary Dat.docx

HI300 Unit 6: Secondary Data Sources - Discussion
Secondary Data Source Findings
Review the following website or the internet to find articles on
specific secondary data sources.
Source:
Quality Healthcare through Quality Information: American
Health Information Management Association. Retrieved from
http://www.ahima.org/
1. Analyze your findings on secondary data sources and discuss
them with your classmates.
2. How do the findings add to and contribute to the information
provided in the text? Try not to duplicate articles that your
classmates have chosen.
Discussion responses should be 300-350 and on topic, original,
and contribute to the quality of the discussion by making
frequent informed references to lesson material.
NO PHARGIARISM! Need 1-2 scholar references.
This is the chapter reading:
Chapter 8: “Secondary Data Sources”
Introduction
As a rich source of data about an individual patient, the health
record’s primary purpose is in patient care and reimbursement

for individual encounters (see chapter 2). However, it is not
easy to see trends in a population of patients by looking at
individual records. For this purpose, data must be extracted
from individual records and entered into databases. These data
may be used in a facility-specific or population-based registry
for research and improvement in patient care. In addition, the
data may be reported to the state and become part of state- and
federal-level databases used to set health policy and improve
healthcare. With the electronic health record, it is possible for
data to be collected once in the EHR and used many times for a
variety of purposes as outlined in this chapter.
The health information management (HIM) professional can
play a variety of roles in managing secondary records and
databases. He or she plays a key role in helping to set up
databases. This task includes determining the content of the
database and ensuring compliance with the laws, regulations,
and accreditation standards that affect its content and use. All
data elements included in the database or registry must be
defined in a data dictionary. The HIM professional may serve as
a data steward to oversee the completeness and accuracy of the
data abstracted for inclusion in the database or registry.
This chapter explains the difference between primary and
secondary data and their users. It also offers an in-depth look at
the types of secondary databases, including indexes and
registries, and their functions. Finally, this chapter discusses
how secondary databases are processed and maintained.
Theory into Practice
A hospital with a level I trauma center serving a tristate area
had an ongoing problem. It was required to provide care to all
major trauma cases from the three states within its service area
regardless of the patients’ ability to pay. However, one of the
states (state X) was unwilling to pay for the care provided to its
indigent patients. Because trauma care can be extremely
intensive and costly, the hospital was losing a lot of money.
The American College of Surgeons requires certified trauma
centers to maintain a trauma registry. To demonstrate the extent

of the problem, the hospital administrator asked the trauma
registrar to gather data on patients from state X. The trauma
registrar easily identified the patients and provided information
by zip code on their location and the type and severity of their
injuries. After the patients had been identified, the business
office was able to calculate the cost to the hospital of providing
their care. The administrator then presented this information to
state X’s legislature to obtain the money to pay for the care the
trauma center provided to the state’s indigent patients.
Differences between Primary and Secondary Data Sources and
Databases
The health record is considered a primary data source because it
contains information about a patient that has been documented
by the professionals who provided care or services to that
patient. Data contained in registries and similar databases are
considered a secondary data source.
Data also are categorized as either patient-specific/identified
data, patient identifiable data, or aggregate data. With patient-
identified data, the patient is identified within the data. The
health record consists entirely of patient-identified data. In
other words, every fact recorded in the record relates to a
particular patient identified by name. Secondary data also may
be patient identified. In some instances, data are entered into a
database along with information such as the patient’s name
maintained in an identified form. Registries are an example of
patient-identified data on groups of patients. Data are patient-
identifiable if the identity of the patient can be derived or
inferred from the data, with or without the assistance of
computers and artificial intelligence (Mon 2007). For example,
if an individual can be identified by using a combination of
elements such as date of birth, zip code, gender, marital status,
and phone number, this would be considered patient-identifiable
data.
More often, however, secondary data are considered aggregate
data. Aggregate data include data on groups of people or
patients without identifying any particular patient individually.

Examples of aggregate data are statistics on the average length
of stay (ALOS) for patients discharged within a particular
diagnosis-related group (DRG).
Purposes and Users of Secondary Data Sources
There are four major purposes for collecting secondary data
(figure 8.1). The first is for quality, performance, and patient
safety. Healthcare facilities, for example, collect core measures
information from the health record for the Centers for Medicare
and Medicaid Services to evaluate the quality of care within the
facility.
Figure 8.1. Four purposes for collecting secondary data
Source: Mon 2007, 11.
The second area of secondary data use is research. Data taken
from health records and entered into disease-oriented databases
can help researchers determine the effectiveness of alternate
treatment methods. They also can quickly demonstrate survival
rates at different stages of diseases.
The third major use is for population health. States, for
example, require that information be reported to them on certain
diseases so that the extent of the disease can be determined and
measures to prevent its spread can be initiated.
The final use of secondary data is for administration. In
credentialing physicians, for example, facilities are required to
access a national database for information on previous
malpractice or other adverse decisions against a physician (Mon
2007).
Internal Users
Internal users of secondary data are individuals located within
the healthcare facility. For example, internal users include
medical staff and administrative and management staff.
Secondary data enable these users to identify patterns and
trends that are helpful in patient care, long-range planning,
budgeting, and benchmarking with other facilities.
External Users
External users of patient data are individuals and institutions
outside the facility. Examples of external users are state data

banks and federal agencies. States have laws that cases of
patients with diseases such as tuberculosis and AIDS must be
reported to the state department of health. Moreover, the federal
government collects data from the states on vital events such as
births and deaths.
The secondary data provided to external users are generally
aggregate data and not patient-identifiable data. Thus, these
data can be used as needed without risking breaches of
confidentiality.
Check Your Understanding 8.1
1. Bob Smith is a 56-year-old white male. This is an example
of what type of data?
A. Patient-specific
B. Primary
C. Aggregate
D. Secondary
2. Which of the following is an example of how an internal
user utilizes secondary data?
A. State infectious disease reporting
B. Birth certificates
C. Death certificates
D. Benchmarking with other facilities
3. Secondary data is used for multiple reasons including:
A. Assisting researchers in determining effectiveness of
treatments
B. Assisting physicians and other healthcare providers in
providing patient care
C. Billing for services provided to the patient
D. Coding diagnoses and procedures treated
Instructions: Indicate whether the following statements are
true or false (T or F).
4. _______ A registry is a secondary data source.
5. _______ A patient health record contains aggregate
data.
6. _______ Administrative and management staff members
are internal users of secondary data.

7. _______ Medical staff members are external users of
secondary data.
Types of Secondary Data Sources
Secondary data sources consist of facility-specific indexes;
registries, either facility or population based; or other
healthcare databases.
Facility-Specific Indexes
The most long-standing secondary data sources are those that
have been developed within facilities to meet their individual
needs. These indexes enable health records to be located by
diagnosis, procedure, or physician. Prior to extensive
computerization in healthcare, these indexes were kept on cards.
Today, most indexes are maintained as computerized reports
based on data from databases routinely developed in the
healthcare facility. (Facility-specific indexes are discussed more
fully in chapter 7.)
Master Population/Patient Index
The master population/patient index (MPI), which is sometimes
called the master person index, contains patient-identifiable
data such as name, address, date of birth, dates of
hospitalizations or encounters, name of attending physician, and
health record number. Because paper-based health records are
filed numerically in most facilities, the MPI is an important
source of patient health record numbers. These numbers enable
the facility to quickly retrieve health information for specific
patients.
Hospitals with unit numbering systems also depend on the MPI
to determine whether a patient has been seen in the facility
before and has an existing health record number. Having this
information in the MPI avoids the duplication of record
numbers. Most of the information in the MPI is entered into the
facility database at the time of admission/preadmission or
registration.
Disease and Operation Indexes
The disease index is a listing in diagnosis code number order of
patients discharged from the facility during a particular time

period. Each patient’s diagnoses are converted from a verbal
description to a numerical code, usually using the International
Classification of Diseases. The patient’s diagnosis codes are
entered into the facility’s health information system as part of
the discharge processing of the patient’s health record. The
index always includes the patient’s health record number as
well as the diagnosis codes so that records can be retrieved by
diagnosis. Because each patient is listed with the health record
number, which may be linked back to the patient’s name, the
disease index is considered patient-identifiable data. The
disease index also may include information such as the
attending physician’s name and the date of discharge.
The operation index is similar to the disease index except that it
is arranged in numerical order by the patient’s procedure
code(s) using International Classification of Diseases or Current
Procedural Terminology (CPT) codes. The other information
listed in the operation index is generally the same as that listed
in the disease index except that the surgeon may be listed in
addition to, or instead of, the attending physician. For
additional information, please see chapter 7.
Physician Index
The physician index is a listing of cases in order by physician
name or physician identification number. It also includes the
patient’s health record number and may include other
information, such as date of discharge. The physician index
enables users to retrieve information about a particular
physician, including the number of cases seen during a
particular time period.
Registries
Disease registries are collections of secondary data related to
patients with a specific diagnosis, condition, or procedure.
Registries are different from indexes in that they contain more
extensive data. Index reports can usually be produced using data
from the facility’s existing databases. Registries often require
more extensive entry of data from the patient record. Each
registry must define the cases that are to be included in it. This

process is called case definition. In a trauma registry, for
example, the case definition might be all patients admitted with
a diagnosis falling into the International Classification of
Diseases trauma diagnosis codes.
After the cases to be included have been determined, the next
step in data acquisition is usually case finding. Case finding is a
method used to identify the patients who have been seen and/or
treated in the facility for the particular disease or condition of
interest to the registry. After cases have been identified,
extensive information is abstracted from the patients’ paper-
based health records into the registry database or extracted from
other databases and automatically entered into the registry
database.
The sole purpose of some registries is to collect data from
health records and to make them available for users. Other
registries take further steps to enter additional information in
the registry database, such as routine follow-up of patients at
specified intervals. Follow-up information might include rate
and duration of survival and quality of life over time.
Cancer Registries
Cancer registries have a long history in healthcare. According
to the National Cancer Registrars Association (NCRA), the first
hospital cancer registry was founded in 1926 at Yale-New
Haven Hospital. It has long been recognized that information is
needed to improve the diagnosis and treatment of cancer.
Cancer registries were developed as an organized method to
collect these data. The data may be facility based (for example,
within a hospital or clinic) or population based (for example,
from more than one facility within a state or region).
The data from facility-based registries are used to provide
information for the improved understanding of cancer, including
its causes and methods of diagnosis and treatment. The data
collected also may provide comparisons in survival rates and
quality of life for patients with different treatments and at
different stages of cancer at the time of diagnosis. In
population-based registries, emphasis is on identifying trends

and changes in the incidence (new cases) of cancer within the
area covered by the registry.
The Cancer Registries Amendment Act of 1992 provided
funding for a national program of cancer registries with
population-based registries in each state. According to the law,
these registries were mandated to collect data such as:
Demographic information about each case of cancer
Information on the industrial or occupational history of the
individuals with the cancers (to the extent such information is
available from the same record)
Administrative information, including date of diagnosis and
source of information
Pathological data characterizing the cancer, including
site,stage of the neoplasm, incidence, and type of treatment
Case Definition and Case Finding in the Cancer Registry
As defined previously, case definition is the process of deciding
which cases should be entered in the registry. In a cancer
registry, for example, all cancer cases except skin cancer might
meet the definition for the cases to be included. In addition to
information on malignant neoplasms, data on benign and
borderline brain/central nervous system tumors must be
collected by the National Program of Cancer Registries (CDC
nd).
In the facility-based cancer registry, the first step is case
finding. One way to find cases is through the discharge process
in the HIM department. During the discharge procedure, coders
and/or discharge analysts can easily earmark cases of patients
with cancer for inclusion in the registry. Another case-finding
method is to use the facility-specific disease indexes to identify
patients with diagnoses of cancer. Additional methods may
include reviews of pathology reports and lists of patients
receiving radiation therapy or other cancer treatments to
determine cases that have not been found by other methods.
Population-based registries usually depend on hospitals,
physician offices, radiation facilities, ambulatory surgery
centers (ASCs), and pathology laboratories to identify and

report cases to the central registry. The administrators of a
population-based registry have a responsibility to ensure that all
cases of cancer have been identified and reported to the central
registry.
Data Collection for the Cancer Registry
Data collection methods vary between facility-based registries
and population-based registries. When a case is first entered in
the registry, an accession number is assigned. This number
consists of the first digits of the year the patient was first seen
at the facility, and the remaining digits are assigned
sequentially throughout the year. The first case in the year, for
example, might be 10-0001. The accession number may be
assigned manually or by the automated cancer database used by
the organization. An accession registry of all cases can be kept
manually or provided as a report by the database software. This
listing of patients in accession number order provides a way to
ensure that all cases have been entered into the registry.
In a facility-based registry, data are initially obtained by
reviewing and collecting them from the patient’s health record.
In addition to demographic information (such as name, health
record number, and address), data in the registry about the
patient include:
Type and site of the cancer
Diagnostic methodologies
Treatment methodologies
Stage at the time of diagnosis
The stage provides information on the size and extent of spread
of the tumor throughout the body. There are currently several
staging systems. The American Joint Committee on Cancer
(AJCC) has worked through its Collaborative Stage Task Force
with other organizations with staging systems to develop a new
standardized staging system, the Collaborative Stage Data Set.
This system uses computer algorithms to describe how far a
cancer has spread (AJCC 2009). After the initial information is
collected at the patient’s first encounter, information in the
registry is updated periodically through the follow-up process

discussed below.
Frequently, the population-based registry only collects
information when the patient is diagnosed. Sometimes, however,
it receives follow-up information from its reporting entities.
These entities usually submit information to the central registry
electronically.
Reporting and Follow-up for Cancer Registry Data
Formal reporting of cancer registry data is done through an
annual report. The annual report includes aggregate data on the
number of cases in the past year by site and type of cancer. It
also may include information on patients by gender, age, and
ethnic group. Often a particular site or type of cancer is
featured with more in-depth data provided.
Other reports are provided as needed. Data from the cancer
registry are frequently used in the quality assessment process
for a facility as well as in research. Data on survival rates by
site of cancer and methods of treatment, for example, would be
helpful in researching the most effective treatment for a type of
cancer.
Another activity of the cancer registry is patient follow-up. On
an annual basis, the registry attempts to obtain information
about each patient in the registry, including whether he or she is
still alive, status of the cancer, and treatment received during
the period. Various methods are used to obtain this information.
For a facility-based registry, the facility’s patient health records
may be checked for return hospitalizations or visits for
treatment. Additionally, the patient’s physician may be
contacted to determine whether the patient is still living and to
obtain information about the cancer.
When patient status cannot be determined through these
methods, an attempt may be made to contact the patient directly
using information in the registry such as the patient’s address
and telephone number. In addition, contact information from the
patient’s health record may be used to request information from
the patient’s relatives. Other methods used include reading
newspaper obituaries for deaths and using the Internet to locate

patients through sites such as the Social Security Death Index
and online telephone books. The information obtained through
follow-up is important to allow the registry to develop statistics
on survival rates for particular cancers and different treatment
methodologies.
Population-based registries do not always include follow-up
information on the patients in their databases. However, those
who do follow up usually receive the information from the
reporting entities such as hospitals, physician offices, and other
organizations providing follow-up care.
Standards and Approval Processes for Cancer Registries
Several organizations have developed standards or approval
processes for cancer programs. The American College of
Surgeons (ACS) Commission on Cancer has an approval process
for cancer programs. One of the requirements of this process is
the existence of a cancer registry as part of the program. The
ACS standards are published in the Cancer Program Standards
(ACS COC 2011). When the ACS surveys the cancer program,
part of the survey process is a review of cancer registry
activities.
The North American Association of Central Cancer Registries
(NAACCR) has a certification program for state population-
based registries. Certification is based on the quality of data
collected and reported by the state registry. NAACCR has
developed standards for data quality and format and works with
other cancer organizations to align their various standards sets.
The Centers for Disease Control and Prevention (CDC) also has
national standards regarding the completeness, timeliness, and
quality of cancer registry data from state registries through the
National Program of Cancer Registries (NPCR). NPCR was
developed as a result of the Cancer Registries Amendment Act
of 1992. The CDC collects data from the NPCR state registries.
Education and Certification for Cancer Registrars
Traditionally, cancer registrars have been trained through on-
the-job training and professional workshops and seminars. The
National Cancer Registrars Association (NCRA) has worked

with colleges to develop formal educational programs for cancer
registrars. A cancer registrar may become credentialed as a
Certified Tumor Registrar (CTR) by passing an examination
provided by the National Board for Certification of Registrars
(NBCR). Eligibility requirements for the certification
examination include a combination of experience and education
(NCRA 2009).
Trauma Registries
Trauma registries maintain databases on patients with severe
traumatic injuries. A traumatic injury is a wound or other injury
caused by an external physical force such as an automobile
accident, a shooting, a stabbing, or a fall. Information collected
by the trauma registry may be used for performance
improvement and research in the area of trauma care. Trauma
registries may be facility based or may include data for a region
or state.
Case Definition and Case Finding for Trauma Registries
The case definition for the trauma registry varies from registry
to registry but frequently involves inclusion of cases with
diagnoses from the trauma diagnosis codes from the
International Classification of Diseases. To find cases with
trauma diagnoses, the trauma registrar can access the disease
indexes looking for cases with codes from this section of
International Classification of Diseases. In addition, the
registrar may look at deaths in services with frequent trauma
diagnoses—such as trauma, neurosurgery, orthopedics, and
plastic surgery—to find additional cases.
Data Collection for Trauma Registries
After the cases have been identified, information is abstracted
from the health records of the injured patients and entered into
the trauma registry database. The data elements collected in the
abstracting process vary from registry to registry but usually
include:
Demographic information on the patient
Information on the injury
Care the patient received before hospitalization (such as care

at another transferring hospital or care from an emergency
medical technician who provided care at the scene of the
accident and/or in transport from the accident site to the
hospital)
Status of the patient at the time of admission
Patient’s course in the hospital
Diagnosis and procedure codes
Abbreviated Injury Scale (AIS)
Injury Severity Score (ISS)
The AIS reflects the nature of the injury and the threat to life of
the injury by body system. It may be assigned manually by the
registrar or generated as part of the database from data entered
by the registrar. The ISS is an overall severity measurement
calculated from the AIS scores for patients with multiple
injuries (Trauma.org 2012).
Reporting and Follow-up for Trauma Registries
Reporting varies among trauma registries. An annual report is
often developed to show the activity of the trauma registry.
Other reports may be generated as part of the performance
improvement process, such as self-extubation (patients
removing their own tubes) and delays in abdominal surgery or
patient complications. Some hospitals report data to the
National Trauma Data Bank (ACS 2011).
Trauma registries may or may not do follow-up on the patients
entered in the registry. When follow-up is done, emphasis is
frequently on the patient’s quality of life after a period of time.
Unlike cancer, where physician follow-up is crucial to detect
recurrence, many traumatic injuries do not require continued
patient care over time. Thus, follow-up is often not given the
emphasis it receives in cancer registries.
Standards and Approval Process for Trauma Registries
The ACS verifies levels I, II, III, and IV trauma centers. As part
of its requirements, the ACS states that the level I trauma center
must have a trauma registry (ACS Trauma Programs 2012).
Education and Certification of Trauma Registrars
Trauma registrars may be Registered Health Information

Technicians (RHITs), Registered Health Information
Administrators (RHIAs), Registered Nurses (RNs), Licensed
Practical Nurses (LPNs), Emergency Medical Technicians
(EMTs), or other health professionals. Training for trauma
registrars is through workshops and on-the-job training. The
American Trauma Society (ATS), for example, provides core
and advanced workshops for trauma registrars. It also provides
a certification examination for trauma registrars who meet their
education and experience requirements through its Registrar
Certification Board. Certified trauma registrars have earned the
credential CSTR (certified specialist in trauma registry).
Birth Defects Registries
Birth defects registries collect information on newborns with
birth defects. Often population based, these registries serve a
variety of purposes. For example, they provide information on
the incidence of birth defects to study causes and prevention of
birth defects, to monitor trends in birth defects, to improve
medical care for children with birth defects, and to target
interventions for preventable birth defects, such as folic acid to
prevent neural tube defects.
In some cases, registries have been developed after specific
events have put a spotlight on birth defects. After the initial
Persian Gulf War, for example, some feared an increased
incidence of birth defects among the children of Gulf War
veterans. The Department of Defense subsequently started a
birth defects registry to collect data on the children of these
veterans to determine whether any pattern could be detected.
Case Definition and Case Finding for Birth Defects Registries
Birth defects registries use a variety of criteria to determine
which cases to include in the registry. Some registries limit
cases to those with defects found within the first year of life.
Others include those children with a major defect that occurred
in the first year of life and was discovered within the first five
years of life. Still other registries include only children who
were live born or stillborn babies with discernible birth defects.
Cases may be detected in a variety of ways, including review of

disease indexes, labor and delivery logs, pathology and autopsy
reports, ultrasound reports, and cytogenetic reports. In addition
to information from hospitals and physicians, cases may be
identified from rehabilitation centers and children’s hospitals
and from vital records such as birth, death, and fetal death
certificates.
Data Collection for Birth Defects Registries
A variety of information is abstracted for the birth defects
registry, including:
Demographic information
Codes for diagnoses
Birth weight
Status at birth, including live born, stillborn, aborted
Autopsy
Cytogenetics results
Whether the infant was a single birth or one in a multiple
birth
Mother’s use of alcohol, tobacco, or illicit drugs
Father’s use of drugs and alcohol
Family history of birth defects
Diabetes Registries
Diabetes registries include cases of patients with diabetes for
the purpose of assistance in managing care as well as for
research. Patients whose diabetes is not kept under good control
frequently have numerous complications. The diabetes registry
can keep up with whether the patient has been seen by a
physician in an effort to prevent complications.
Case Definition and Case Finding for Diabetes Registries
There are two types of diabetes mellitus: type 1 and type 2
diabetes. Registries sometimes limit their cases by type of
diabetes. In some instances, there may be further definition by
age. Some diabetes registries, for example, only include
children with diabetes.
Case finding includes the review of health records of patients
with diabetes. Other case-finding methods include review of the
following types of information:

Diagnostic codes
Billing data
Medication lists
Physician identification
Health plans
Although facility-based registries for cancer and trauma are
usually hospital based, facility-based diabetes registries are
often found in physician offices or clinics. The office or clinic
is the main location for diabetes care. Thus, data about the
patient to be entered into the registry are available at these sites
rather than at the hospital. The health records of diabetes
patients treated in physician practices may be identified through
diagnosis code numbers for diabetes, billing data for diabetes-
related services, medication lists for patients on diabetic
medications, or identification of patients as the physician sees
them.
Health plans also are interested in optimal care for their
enrollees because diabetes can have serious complications when
not managed correctly. The plans can provide information to the
office or clinic on enrollees who are diabetics.
Data Collection for Diabetes Registries
In addition to demographic information about the cases, other
data collected may include laboratory values such as glycated
hemoglobin also known as HBA1c. This test is used to
determine the patient’s blood glucose for a period of
approximately 60 days prior to the time of the test. Moreover,
facility registries may track patient visits to follow up with
patients who have not been seen in the past year.
Reporting and Follow-up for Diabetes Registries
A variety of reports can be developed from the diabetes
registry. For facility-based registries, one report might keep up
with laboratory monitoring of the patient’s diabetes to allow
intensive intervention with patients whose diabetes is not well
controlled. Another report might concern patients who have not
been tested within a year or have not had a primary care
provider visit within a year.

Population-based diabetes registries might provide reporting on
the incidence of diabetes for the geographic area covered by the
registry. Registry data also might be used to investigate risk
factors for diabetes.
Follow-up is aimed primarily at ensuring that the diabetic is
seen by the physician at appropriate intervals to prevent
complications.
Implant Registries
An implant is a material or substance inserted into the body,
such as breast implants, heart valves, and pacemakers. Implant
registries have been developed for the purpose of tracking the
performance of implants, including complications, deaths, and
defects resulting from implants, as well as implant longevity. In
the recent past, the safety of implants has been questioned in a
number of highly publicized cases. In Texas, a woman who had
a partial mastectomy after her breast implant ruptured was
awarded $25 million dollars. Implant manufacturers Corning,
Baxter, Bristol-Myers Squibb/MEC, and 3M settled a class
action lawsuit after women claimed to suffer autoimmune
disease from their silicone breast implants. In some cases,
implant registries have been developed in response to such
events. For example, there have been questions about the safety
of silicone breast implants and temporomandibular joint
implants. When such cases arise, it has often been difficult to
ensure that all patients with the implants have been notified of
safety concerns. A number of federal laws have been enacted to
regulate medical devices, including implants. These devices
were first covered under Section 15 of the Food, Drug, and
Cosmetic Act. The Safe Medical Devices Act of 1990 was
passed and then amended through the Medical Device
Amendments of 1992. These acts required a sample of facilities
to report deaths and severe complications thought to be due to a
device to the manufacturer and the Food and Drug
Administration (FDA) through its MedWatch reporting system.
The MedWatch reporting system alerts health professionals and
the public of safety alerts and medical device recalls (FDA

2009). Implant registries may help to assure compliance with
legal reporting requirements for device related deaths and
complications.
Case Definition and Case Finding for Implant Registries
Implant registries sometimes include all types of implants but
often are restricted to a specific type of implant such as
cochlear, saline breast, or temporomandibular joint.
Data Collection for Implant Registries
Demographic data on patients receiving implants are included in
the registry. The FDA requires that all reportable events
involving medical devices include the following information
(FDA 2011):
User facility report number
Name and address of the device manufacturer
Device brand name and common name
Product model, catalog, serial, and lot numbers
Brief description of the event reported to the manufacturer
and/or the FDA
Where the report was submitted (for example, to the FDA,
manufacturer, or distributor)
Thus, these data items also should be included in the implant
registry to facilitate reporting.
Reporting and Follow-up for Implant Registries
Data from the implant registry may be used to report to the FDA
and the manufacturer when devices cause death or serious
illness or injury.
Follow-up is important to track the performance of the implant.
When patients are tracked, they can be easily notified of
product failures, recalls, or upgrades.
Transplant Registries
Transplant registries may have varied purposes. Some organ
transplant registries maintain databases of patients who need
organs. When an organ becomes available, a fair way then may
be used to allocate the organ to the patient with the highest
priority. In other cases, the purpose of the registry is to provide
a database of potential donors for transplants using live donors,

such as bone marrow transplants. Post-transplant information
also is kept on organ recipients and donors.
Because transplant registries are used to try to match donor
organs with recipients, they are often national or even
international in scope. Examples of national registries include
the UNet of the United Network for Organ Sharing (UNOS) and
the registry of the National Marrow Donor Program (NMDP).
Data collected in the transplant registry also may be used for
research, policy analysis, and quality control.
Case Definition and Case Finding for Transplant Registries
Physicians identify patients needing transplants. Information
about the patient is provided to the registry. When an organ
becomes available, information about it is matched with
potential donors. For donor registries, donors are solicited
through community information efforts similar to those carried
out by blood banks to encourage blood donations.
Data Collection for Transplant Registries
The type of information collected varies according to the type
of registry. Pre-transplant data about the recipient include:
Demographic data
Patient’s diagnosis
Patient’s status codes regarding medical urgency
Patient’s functional status
Whether the patient is on life support
Previous transplantations
Histocompatibility (compatibility of donor and recipient
tissues)
Information on donors varies according to whether the donor is
living. For organs harvested from patients who have died,
information is collected on:
Cause and circumstances of the death
Organ procurement and consent process
Medications the donor was taking
Other donor history
For a living donor, information includes:
Relationship of the donor to the recipient (if any)

Clinical information
Information on organ recovery
Histocompatibility
Reporting and Follow-up for Transplant Registries
Reporting includes information on donors and recipients as well
as survival rates, length of time on the waiting list for an organ,
and death rates.
Follow-up information is collected for recipients as well as
living donors. For living donors, the information collected
might include complications of the procedure and length of stay
in the hospital. Follow-up on recipients includes information on
status at the time of follow-up (for example, living, expired,
lost to follow-up), functional status, graft status, and treatment,
such as immunosuppressive drugs. Follow-up is carried out at
intervals throughout the first year after the transplant and then
annually after that.
Immunization Registries
Children are supposed to receive a large number of
immunizations during the first six years of life. These
immunizations are so important that the federal government has
set several objectives related to immunizations in Healthy
People 2020, a set of health goals for the nation. These include
increasing the proportion of children and adolescents that are
fully immunized (objectives 7–12) and increasing the proportion
of children in population-based immunization registries
(objectives 18–20) (Healthy People 2012).
Immunization registries usually have the purpose of increasing
the number of infants and children who receive the required
immunizations at the proper intervals. To accomplish this goal,
registries collect information within a particular geographic
area on children and their immunization status. They also help
by maintaining a central source of information for a particular
child’s immunization history, even when the child has received
immunizations from a variety of providers. This central location
for immunization data also relieves parents of the responsibility
of maintaining immunization records for their children.

Case Definition and Case Finding for Immunization Registries
All children in the population area served by the registry should
be included in the registry. Some registries limit their inclusion
of patients to those seen at public clinics, excluding those seen
exclusively by private practitioners. Although children are
usually targeted in immunization registries, some registries do
include information on adults for influenza and pneumonia
vaccines.
Children are often entered in the registry at birth. Registry
personnel may review birth and death certificates and adoption
records to determine which children to include and which
children to exclude because they died after birth. In some cases,
children are entered electronically through a connection with an
electronic birth record system.
Data Collection for Immunization Registries
The National Immunization Program at the CDC has worked
with the National Vaccine Advisory Committee (NVAC) to
develop a core set of immunization data elements to be included
in all immunization registries. These data elements include
(CDC 2011b):
Patient name (first, middle, and last)
Patient birth date
Patient sex
Patient race
Patient ethnicity
Patient birth order
Patient birth state/country
Mother’s name (first, middle, last, and maiden)
Vaccine type
Vaccine manufacturer
Vaccination date
Vaccine lot number
Other items may be included as needed by the individual
registry.
Reporting and Follow-up for Immunization Registries
Because the purpose of the immunization registry is to increase

the number of children who receive immunizations in a timely
manner, reporting should emphasize immunization rates,
especially changes in rates in target areas. Immunization
registries also can provide automatic reporting of children’s
immunization to schools to check the immunization status of
their students.
Follow-up is directed toward reminding parents that it is time
for immunizations as well as seeing whether parents fail to
bring the child in for the immunization after a reminder.
Reminders may include a letter or postcard or telephone calls.
Autodialing systems may be used to call parents and deliver a
prerecorded reminder. Moreover, registries must decide how
frequently to follow up with parents who do not bring their
children in for immunization. Maintaining up-to-date addresses
and telephone numbers is an important factor in providing
follow-up. Registries may allow parents to opt out of the
registry if they prefer not to be reminded.
Standards and Approval Processes for Immunization Registries
The CDC, through its National Immunization Program, provides
funding for some population-based immunization registries. It
has identified 12 minimum functional standards for
immunization registries (CDC 2011b), including:
Electronically store data on all NVAC-approved core data
elements.
Establish a registry record within six weeks of birth for each
newborn child born in the catchment area.
Enable access to and retrieval of immunization information
in the registry at the time of the encounter.
Receive and process immunization information within one
month of vaccine administration.
Protect the confidentiality of healthcare information.
Ensure the security of healthcare information.
Exchange immunization records using Health Level Seven
(HL7) standards.
Automatically determine the routine childhood
immunization(s) needed, in compliance with current ACIP

(Advisory Committee on Immunization Practices)
recommendations, when an individual presents for a scheduled
immunization.
Automatically identify individuals due/late for
immunization(s) to enable the production of reminder/recall
notifications.
Automatically produce immunization coverage reports by
providers, age groups, and geographic areas.
Produce official immunization records.
Promote the accuracy and completeness of registry data.
The CDC provides funding for population-based immunization
registries.
Other Registries
Registries may be developed for any type of disease or
condition. Other commonly kept types of registries are
HIV/AIDS and cardiac registries. In 2007 the state of Nebraska
initiated a partnership within the state called the Nebraska
Registry Partnership (NRP) to introduce, sustain and gradually
expand a registry for chronic disease management for
cardiovascular diseases and diabetes care improvement for
patients seen in rural health clinics (Smith 2007).
In addition, the American Gastroenterological Association
(AGA) sponsors the AGA Digestive Health Outcomes Registry.
The AGA Registry is the only gastroenterology registry
sponsored by the Centers for Medicare and Medicaid Services
(CMS), enabling practices to directly submit data for the CMS
Physician Quality Reporting System. It is a national outcomes-
driven registry that allows clinicians to monitor and improve
patient care, while generating data to compare the efficacy of
treatments (GMed 2011).
Registries may be developed for administrative purposes also.
The National Provider Identifier Registry is an example of an
administrative registry. The NPI Registry enables users to
search for a provider’s national plan and provider enumeration
system information, including the national provider
identification number. The NPI number is a 10-digit unique

identification number assigned to healthcare providers in the
United States (CMS 2011). There is no charge to use the
registry and it is updated daily (National Plan and Provider
Enumeration System 2012). Data collected for healthcare
administrative purposes are discussed in the next subsection.
Healthcare Databases
Databases also may be developed for a variety of purposes. For
example, the federal government has developed a variety of
databases to enable it to carry out surveillance, improvement,
and prevention duties. HIM managers may provide information
for these databases through data abstraction or from data
reported by a facility to state and local entities. They also may
use these data to do research or work with other researchers on
issues related to reimbursement and health status.
National and State Administrative Databases
Some databases are established for administrative rather than
disease-oriented reasons. Data banks are developed, for
example, for claims data submitted on Medicare claims. Other
administrative databases assist in the credentialing and
privileging of health practitioners.
Medicare Provider Analysis and Review File
The Medicare Provider Analysis and Review (MEDPAR) File is
made up of acute care hospital and skilled nursing facility
(SNF) claims data for all Medicare claims. It consists of the
following types of data:
Demographic data on the patient
Data on the provider
Information on Medicare coverage for the claim
Total charges
Charges broken down by specific type of service, such as
operating room, physical therapy, and pharmacy charges
International Classification of Diseases diagnosis and
procedure codes
MS-DRGs
The MEDPAR file is frequently used for research on topics such
as charges for particular types of care and MS-DRGs. The

limitation of the MEDPAR data for research purposes is that the
file contains only Medicare patients.
National Practitioner Data Bank
The National Practitioner Data Bank (NPDB) was mandated
under the Health Care Quality Improvement Act of 1986 to
provide a database of medical malpractice payments, adverse
licensure actions, and certain professional review actions (such
as denial of medical staff privileges) taken by healthcare
entities such as hospitals against physicians, dentists, and other
healthcare providers as well as private accrediting organizations
and peer review organizations (NPDB 2010). The NPDB was
developed to alleviate the lack of information about malpractice
decisions, denial of medical staff privileges, or loss of medical
license. Because these data were not widely available,
physicians who lost their license to practice in one state or
facility could move to another state or another facility and
begin practicing again with the current state and/or facility
unaware of previous actions against the physician.
Information in the NPDB is provided through a required
reporting mechanism. Entities making malpractice payments,
including insurance companies, boards of medical examiners,
and entities such as hospitals and professional societies, must
report to the NPDB. The information to be reported includes
information about the practitioner, the reporting entity, and the
judgment or settlement. Information about physicians and other
healthcare providers must be provided (NPDB 2010). A recent
change to the law now requires entities such as private
accrediting organizations and peer review organizations to
report adverse actions to the data bank. In addition, adverse
licensure and other actions against any health care entity must
be reported, not just physicians and dentists. Adverse actions
may include reporting incidents of license suspensions or
revocations. It may also include issues related to professional
competence, and malpractice payments. Monetary penalties may
be assessed for failure to report.
The law requires healthcare facilities to query the NPDB as part

of the credentialing process when a physician initially applies
for medical staff privileges and every two years thereafter.
Healthcare Integrity and Protection Data Bank
Part of the Health Insurance Portability and Accountability Act
of 1996 (HIPAA) mandated the collection of information on
healthcare fraud and abuse because there was no central place to
obtain this information. As a result, the national Healthcare
Integrity and Protection Data Bank (HIPDB) was developed.
The types of items that must be reported to the data bank
include reportable final adverse actions such as (HHS 2010):
Federal or state licensing and certification actions, including
revocation, reprimands, censures, probations, suspensions, and
any other loss of license, or the right to apply for or renew a
license, whether by voluntary surrender, non-renewability, or
otherwise
Exclusions from participation in federal or state healthcare
programs
Any other adjudicated actions or decisions defined in the
HIPDB regulations
There may be some overlap with the NPDB, so a single report is
made and then sorted to the appropriate data bank.
Information to be reported includes information about the
healthcare provider, supplier, or practitioner that is the subject
of the final adverse action, the nature of the act, and a
description of the actions on which the decision was based.
Only federal and state government agencies and health plans are
required to report, and access to the data bank is limited to
these organizations and to practitioners, providers, and
suppliers who may only query about themselves.
State Administrative Data Banks
States also frequently have health-related administrative
databases. For example, many states collect either UHDDS or
UB-04/837 Institutional data on patients discharged from
hospitals located within their area. The Statewide Planning and
Research Cooperative System (SPARCS) in New York is an
example of this type of administrative database. It combines

UB-04/837 Institutional data with data required by the state of
New York.
National, State, and County Public Health Databases
Public health is the area of healthcare dealing with the health of
populations in geographic areas such as states or counties.
Publicly reported healthcare data vary from quality and patient
safety measurement data to patient satisfaction results. The
aggregated data range from a local to national perspective, such
as state-specific public health conditions to national morbidity
and mortality statistics. In addition, consumers are becoming
more actively involved in their healthcare. Publicly reported
data may be presented for consumer use through various star
ratings on different quality measures via organizations such as
The Leapfrog Group, HealthGrades, or Hospital Compare. The
Leapfrog Group and Hospital Compare allow users to select
various hospitals to compare data such as specific medical
conditions, surgical procedures, or overall patient safety
ratings. Based on the selections made, data is compared to the
hospitals selected as well as to state and national averages. One
of the duties of public health agencies is surveillance of the
health status of the population within their jurisdiction.
The databases developed by public health departments provide
information on the incidence and prevalence of diseases,
possible high-risk populations, survival statistics, and trends
over time. Data for the databases may be collected using a
variety of methods, including interviews, physical examinations
of individuals, and reviews of health records. Thus, the HIM
manager may have input in these databases through data
provided from health records. At the national level, the National
Center for Health Statistics has responsibility for these
databases.
National Health Care Survey
One of the major national public health surveys is the National
Health Care Survey. To a large extent, it relies on data from
patients’ health records. It consists of a number of parts,
including:

The National Hospital Care Survey
The National Ambulatory Medical Care Survey
The National Survey of Ambulatory Surgery
The National Nursing Home Survey
The National Home and Hospice Care Survey
Data in the National Hospital Care Survey are either abstracted
manually from a sample of acute care discharged inpatient
records or obtained from state or other discharge databases.
Items collected follow the Uniform Hospital Discharge Data Set
(UHDDS), including demographic data, admission and
discharge dates, and final diagnoses and procedures.
The National Ambulatory Medical Care Survey includes data
collected by a sample of office-based physicians and their staffs
from the health records of patients seen in a one-week reporting
period. Data included are demographic data, the patients’
reasons for visit, the diagnoses, diagnostic/screening services,
therapeutic and preventive services, ambulatory surgical
procedures, and medications/injections, in addition to
information on the visit disposition and time spent with the
physician.
Data for the National Survey of Ambulatory Surgery are
collected on a representative sample of hospital-based and
freestanding ambulatory surgery centers. Data include patient
demographic characteristics, source of payment, and
information on anesthesia given, the diagnoses, and the surgical
and nonsurgical procedures on patient visits of hospital-based
and freestanding ambulatory surgery centers. The survey
consists of a mailed survey about the facility and abstracts of
patient data.
The National Nursing Home Survey provides data on each
facility, current residents, and discharged residents. Information
is gathered through an interview process. The administrator or
designee provides information about the facility being surveyed.
For information on the residents, the nursing staff member most
familiar with the resident’s care is interviewed. The staff
member uses the resident’s health record for reference during

the interview. Data collected on the facility include information
on ownership, size, certification status, admissions, services,
full-time equivalent employees, and basic charges. Interviews
about both current and discharged residents provide
demographic information on the resident as well as length of
stay, diagnoses, level of care received, activities of daily living
(ADL), and charges.
For the National Home and Hospice Care Survey, data are
collected on the home health or hospice agency as well as on
their current and discharged patients. Data include referral and
length of service, diagnoses, number of visits, patient charges,
health status, reason for discharge, and types of services
provided. Facility data are provided through an interview with
the administrator or designee. Patient information is obtained
from the caregiver most familiar with the patient’s care. The
caregiver may use the patient’s health record in answering the
interview questions.
Because of the bioterrorism scares in recent years, the CDC has
developed the National Electronic Disease Surveillance System
(NEDSS) that serves as a major part of the Public Health
Information Network (PHIN). This system provides a national
surveillance system by connecting the CDC with local and state
public health partners. It allows the CDC to monitor trends from
disease reporting at the local and state levels to look for
possible bioterrorism incidents.
Other national public health databases include the National
Health Interview Survey, which is used to monitor the health
status of the population of the United States, and the National
Immunization Survey, which collects data on the immunization
status of children between the ages of 19 months and 35 months
living in the United States. Table 8.1 summarizes the national
databases.
Table 8.1. National heathcare databases
Database
Type of Setting

Content
Data Source
Method of Data Collection
National Ambulatory Medical Care Survey
Office-based physician practice
Data on the patient and the visit
State discharge databases
Office-based physician records
Abstract
National Nursing Home Survey
Nursing home
Data on the facility, current and discharged residents
Administrator
Nurse caregiver
Interview
National Hospital Ambulatory Medical Care Survey
Hospital emergency departments and outpatient clinics
Data on the patient, the visit, and the method of payment
Emergency department and outpatient clinic records
Abstract
National Home and Hospice Care Survey

Home health and hospice
Facility data and patient data
Administrator Caregiver
Interview
National
Electronic Disease Surveillance System (NEDSS)
Public health departments
Possible bioterrorism incidents
Local and state public health departments
Electronic surveillance
State and local public health departments also develop
databases, as needed, to perform their duties of health
surveillance, disease prevention, and research. An example of
state databases is infectious/notifiable disease databases. Each
state has a list of diseases that must be reported to the state,
such as AIDS, measles, and syphilis, so that containment and
prevention measures can be taken to avoid large outbreaks of
these diseases. As mentioned above, state and local reporting
systems connect with the CDC through NEDSS to evaluate
trends in disease outbreaks. There also may be statewide
databases/registries that collect extensive information on
particular diseases and conditions such as birth defects,
immunizations, and cancer.
The National Center for Health Statistics, Centers for Disease
Control began the National Hospital Care Survey (NHCS) in
2011. This survey combines the National Hospital Discharge
Survey (NHDS) and the National Hospital Ambulatory Medical
Care Survey (NHAMCS). In 2013, in addition to inpatient data,

the hospitals will be asked to provide data on the utilization of
healthcare services provided in their emergency, outpatient
departments, and ambulatory surgery centers, thus integrating
the NHDS and NHAMCS into NHCS. NHCS replaced NHDS
and NHAMCS but continues to provide nationally
representative data on utilization of hospital care and general
purpose healthcare statistics on inpatient care as well as care
delivered in emergency, outpatient departments, and ambulatory
surgery centers (CDC 2011a).
Vital Statistics
Vital statistics include data on births, deaths, fetal deaths,
marriages, and divorces. Responsibility for the collection of
vital statistics rests with the states. The states share information
with the National Center for Health Statistics (NCHS). The
actual collection of the information is carried out at the local
level. For example, birth certificates are completed at the
facility where the birth occurred and then are sent to the state.
The state serves as the official repository for the certificate and
provides vital statistics information to the NCHS. From the vital
statistics collected, states and the national government develop
a variety of databases.
One vital statistics database at the national level is the Linked
Birth and Infant Death Data Set. In this database, the
information from birth certificates is compared to death
certificates for infants under one year of age. This database
provides data to conduct analyses for patterns of infant death.
Other national programs that use vital statistics data include the
National Mortality Followback Survey, the National Survey of
Family Growth, and the National Death Index (CDC 2012). In
some of these databases, such as the National Maternal and
Infant Health Survey and the National Mortality Followback
Survey, additional information is collected on deaths originally
identified through the vital statistics system.
Similar databases using vital statistics data as a basis are found
at the state level. Birth defects registries, for example,
frequently use vital records data with information on the birth

defect as part of their data collection process. For additional
information on vital statistics, see chapter 9.
Clinical Trials
A clinical trial is a research project in which new treatments
and tests are investigated to determine whether they are safe
and effective. The trial proceeds according to a protocol, which
is the list of rules and procedures to be followed. Clinical trials
databases have been developed to allow physicians and patients
to find clinical trials. A patient with cancer or AIDS, for
example, might be interested in participating in a clinical trial
but not know how to locate one applicable to his or her type of
disease. Clinical trials databases provide the data to enable
patients and practitioners to determine what clinical trials are
available and applicable to the patient.
The Food and Drug Administration Modernization Act of 1997
mandated that a clinical trials database be developed. The
National Library of Medicine has developed the database, which
is available on the Internet for use by both patients and
practitioners at http://www.clinicaltrials.gov. Information in the
database includes:
Abstracts of study protocols
— Brief summary of the purpose of the study
— Recruiting status
— Criteria for patient participation
— Location of the trial and specific contact information
Additional information (may help a patient decide whether to
consider a particular trial)
— Research study design
— Phase of the trial
— Disease or condition and drug or therapy under study
Each data element has been defined. For example, a brief
summary gives an overview of the treatments being studied and
types of patients to be included. Recruiting status indicates
whether subjects are currently being entered in the trial or will
be in the future or whether the trial is closed to new subjects.
Criteria for patient participation include information on the type

of condition to be studied (in some cases, the stage of the
disease) and what other treatments are allowed during the trial
or must be completed before entering the trial. Age is a frequent
eligibility criterion (Clinicaltrials.gov 2009). Study design
includes the research design being followed.
A clinical trial consists of four study phases. Phase I studies
research the safety of the treatment in a small group of people.
In phase II studies, emphasis is on determining the treatment’s
effectiveness and further investigating safety. Phase III studies
look at effectiveness and side effects and make comparisons to
other available treatments in larger populations. Phase IV
studies look at the treatment after it has entered the market.
Some clinical trials databases concentrate on a particular
disease. The Department of Health and Human Services, for
example, has developed ACTIS, the AIDS Clinical Trials
Information Service. The National Cancer Institute sponsors
PDQ (Physician Data Query), a database for cancer clinical
trials. These databases contain information similar to
Clinicaltrials.gov. Although Clinicaltrials.gov has been set up
for use by both patients and health practitioners, some databases
are more oriented toward practitioners.
Health Services Research Databases
Health services research is research concerning healthcare
delivery systems, including organization and delivery and care
effectiveness and efficiency. Within the federal government, the
organization most involved in health services research is the
Agency for Healthcare Research and Quality (AHRQ). AHRQ
looks at issues related to the efficiency and effectiveness of the
healthcare delivery system, disease protocols, and guidelines for
improved disease outcomes.
A major initiative for AHRQ has been the Healthcare Cost and
Utilization Project (HCUP). HCUP uses data collected at the
state level from either claims data or discharge-abstracted data,
including the UHDDS items reported by individual hospitals
and, in some cases, by freestanding ambulatory care centers.
Which data are reported depends on the individual state. Data

may be reported by the facilities to a state agency or to the state
hospital association, depending on state regulations. The data
then are reported from the state to AHRQ, where they become
part of the HCUP databases (AHRQ 2012)
HCUP consists of a set of databases, including:
The Nationwide Inpatient Sample (NIS), which consists of
inpatient discharge data from a sample of hospitals in 35 states
throughout the United States
The State Inpatient Database (SID), which includes data
collected by states on hospital discharges
The State Ambulatory Surgery Database (SASD), which
includes information from a sample of states on hospital-
affiliated ASCs and, from some states, data from freestanding
surgery centers
State Emergency Department Databases include data from
hospital-affiliation emergency departments (EDs) for visits that
do not result in a hospitalization
The Kids Inpatient Database (KID) is made up of inpatient
discharge data on children younger than 19 years old
(Healthcare Costs and Utilization Project 2009)
These databases are unique because they include data on
inpatients whose care is paid for by all types of payers,
including Medicare, Medicaid, private insurance, self-paying,
and uninsured patients. Data elements include demographic
information, information on diagnoses and procedures,
admission and discharge status, payment sources, total charges,
length of stay, and information on the hospital or freestanding
ambulatory surgery center. Researchers may use these databases
to look at issues such as those related to the costs of treating
particular diseases, the extent to which treatments are used, and
differences in outcomes and cost for alternative treatments.
National Library of Medicine
The National Library of Medicine (NLM) produces two
databases of special interest to the HIM manager: MEDLINE
and UMLS.
1) Medical Literature, Analysis, and Retrieval System Online

(MEDLINE) is the best-known database from the NLM. It
includes bibliographic listings for publications in the areas of
medicine, dentistry, nursing, pharmacy, allied health, and
veterinary medicine. HIM managers use MEDLINE to locate
articles on HIM issues as well as articles on medical topics
necessary to carry out quality improvement and medical
research activities.
2) The Unified Medical Language System (UMLS) provides a
way to integrate biomedical concepts from a variety of sources
to show their relationships. This process allows links to be
made between different information systems for purposes such
as electronic health record systems. UMLS is of particular
interest to the HIM manager because medical vocabularies such
as the International Classification of Diseases, Ninth Revision,
Clinical Modification (ICD-9-CM), Current Procedural
Terminology (CPT), and the Healthcare Common Procedure
Coding System (HCPCS) are among the items included.
Health Information Exchange
Health information exchange (HIE) initiatives have been
developed in an effort to move toward a longitudinal patient
record with complete information about the patient available at
the point of care. This is patient-specific rather than aggregate
data and is used primarily for patient care. Some researchers
have looked at the amount of data available through the health
information exchanges as a possible source of data to aggregate
for research. Since HIE is a fairly new concept, it is important
that HIEs take the time to develop policies and procedures
covering the use of data collected for patient care for other
purposes. Special attention needs to be paid to whether patients
included in the HIE need to provide individual consent to be
included when the data is aggregated for research and other
purposes. Aggregated data can be deidentified to add another
layer of protection for the patient’s identity. For additional
information on HIE, see chapter 16.
Data for Performance Measurement
The Joint Commission, the Centers for Medicare and Medicaid

Services, and some health plans require healthcare facilities to
collect data on core performance measures. These measures are
secondary data because they are taken from patient medical
records. Facilities must determine how to collect these measures
and how to aggregate the data for reporting purposes. Whether a
facility reports such measures will be used as a basis for pay for
performance systems. It is, therefore, extremely important that
the data accurately reflect the quality of care provided by the
facility.
1. Which of the following indexes is an important source of
patient health record numbers?
A. Physician index
B. Master patient index
C. Operation index
D. Disease index
2. After the types of cases to be included in a registry have
been determined, what is the next step in data acquisition?
A. Case registration
B. Case definition
C. Case abstracting
D. Case finding
3. What number is assigned to a case when it is first entered
in a cancer registry?
A. Accession number
B. Patient number
C. Health record number
D. Medical record number
4. What are the patient data such as name, age, address, and
so on called?
A. Demographic data
B. Secondary data
C. Aggregate data
D. Identification data
5. What type of registry maintains a database on patients
injured by an external physical force?

A. Implant registry
B. Birth defects registry
C. Trauma registry
D. Transplant registry
6. Why is the MEDPAR File limited in terms of being used
for research purposes?
A. It only provides demographic data about patients.
B. It only contains Medicare patients.
C. It uses ICD-9-CM diagnoses and procedure codes.
D. It breaks charges down by specific type of service.
7. Which of the following acts mandated establishment of the
National Practitioner Data Bank?
A. Health Care Quality Improvement Act of 1986
B. Health Insurance Portability and Accountability Act of
1996
C. Safe Medical Devices Act of 1990
D. Food and Drug Administration Modernization Act of
1997
8. I started work today on a clinical trial. I need to
familiarize myself with the rules and procedures to be followed.
This information is called the:
A. Protocol
B. MEDPAR
C. UMLS
D. HCUP
9. An advantage of HCUP is that it:
A. Contains only Medicare data
B. Is used to determine pay for performance
C. Contains data on all payer types
D. Contains bibliographic listings from medical journals
Processing and Maintenance of Secondary Databases
Several issues surround the processing and maintenance of
secondary databases. HIM managers are often involved in
decisions concerning these issues.
Manual versus Automated Methods of Data Collection
Although registries and databases are almost universally

electronic, data collection is commonly done manually. The
most frequent method is abstracting. Abstracting is the process
of reviewing the patient health record and entering the required
data elements into the database. In some cases, the abstracting
may be done initially on an abstract form. The data then would
be entered into the database from the form. In many cases, it is
done directly from the primary patient health record into a data
collection screen in the electronic database system.
However, not all data collection is done manually. In some
cases, data can be downloaded directly from other electronic
systems. Birth defects registries, for example, often download
information on births and birth defects from the vital records
system. In some cases, providers such as hospitals and
physicians send information in electronic format to the registry
or database. The National Hospital Care Survey, formerly
known as the National Hospital Discharge Survey, from the
National Center for Health Statistics uses information in
electronic format from state databases. As the electronic health
record (EHR) develops further, less and less data will need to
be manually abstracted since they will be available
electronically through the EHR.
Vendor Systems versus Facility-Specific Systems
Each facility must determine what information technology
solution best meets its needs.
A vendor system is an information system developed by an
outside company and sold to a variety of organizations. A
facility-specific system is an information system developed
within the facility for its own use. It may be part of the facility
health information system (HIS). It is important that either type
of product is able to incorporate demographic and other
pertinent information from the facility HIS system. In this way,
time is saved and data integrity between the registry
information and the HIS system is maintained.
Data Stewardship Issues Associated with Secondary Data
Collection and Use
With the increased availability of secondary data in electronic

format, there are concerns about collecting healthcare data in an
environment without clear guidance about ownership of
secondary data, unauthorized reuse of data, and spotty
confidentiality and security regulations. Patients have concerns
that secondary data collected about them may adversely affect
their employment or ability to obtain health insurance. It is
much more difficult for patients to determine what information
about them is maintained in secondary databases than it is to
view their primary health records. Such concerns have led to
increasing emphasis on data stewardship.
According to the National Center for Vital and Health Statistics,
data stewardship is “… a responsibility, guided by principles
and practices, to ensure the knowledgeable and appropriate use
of data derived from individuals’ personal health information.
These uses include (but are not limited to) data collection,
viewing, storage, exchange, aggregation, and analysis” (NCVHS
2009). Data stewardship encompasses the concepts of data
quality, security, confidentiality, and uniformity. Issues involve
the rights of stakeholders to access, use, and control the data
maintained about their care.
Many of these data stewardship issues have been the domain of
health information managers since the profession began. It is
important for HIM professionals to migrate these skills from the
paper to the electronic environment to maintain their leadership
in this area.
Data Quality Issues
Indexes, registries, and databases are only helpful when the data
they contain are accurate. Decisions concerning new treatment
methods, healthcare policy, and physician credentialing and
privileging are based on these databases. Incorrect data will
likely result in serious errors in decision making.
An important tenet in quality of secondary data is the quality of
the primary data source. The patient health record often
contains inconsistencies and errors that can lead to data quality
issues in secondary data sources. It is important that facilities
and providers pursue clinical documentation improvement to

ensure the quality of the primary data source necessary for
quality secondary data.
Several factors must be addressed when assessing data quality.
These include data accuracy, consistency, completeness, and
timeliness. (Elements of data quality are also discussed in
chapter 2.)
Accuracy of the Data
Data accuracy, also referred to as data validity means that data
are correct. For example, in a cancer registry, the stage of the
neoplasm must be recorded accurately because statistical
information on survival rates by stage is commonly reported.
Several methods may be used to ensure validity. One method is
to incorporate edits in the database. An edit is a check on the
accuracy of the data, such as setting data types. If a particular
data element, such as admission date, is set up with a data type
of date, the computer will not allow other types of data, such as
name, to be entered in that field. Other edits may use
comparisons between fields to ensure accuracy. For example, an
edit might check to see that all patients with the diagnosis of
prostate cancer are listed as males in the database.
Consistency of the Data
Another factor to be considered in looking at data quality is
consistency, sometimes referred to as data reliability. For
example, all patients in a trauma registry with the same level,
severity, and site of injury should have the same score on the
Abbreviated Injury Scale. Reliability is frequently checked by
having more than one person abstract data for the same case.
The results are then compared to identify any discrepancies.
This is called an interrater reliability method of checking.
Several different people may be used to do the checking. In a
cancer registry, for example, physician members of the cancer
committee may be called on to check the reliability of the data.
Comprehensiveness of the Data
Comprehensiveness, also referred to as completeness is another
factor to be considered in data quality. Missing data may
prevent the database from being useful for research or clinical

decision making. To avoid missing data, some databases will
not allow the user to move to the next field without making an
entry in the current one, especially for fields considered crucial.
Looking at a variety of sources in case findings is a way to
avoid missing patients who should be included in a registry.
Timeliness of the Data
Another concept important in data quality is timeliness. Data
timeliness means that healthcare data should be up-to-date. Data
must also be available within a time frame helpful to the user.
Factors that influence decisions may change over time, so it is
important that the data reflect up-to-date information.
Data Confidentiality
Data confidentiality usually refers to efforts to guarantee the
privacy of personal health information.
HIPAA-Covered Entities
When looking at confidentiality issues, it is important to
consider the HIPAA regulations for privacy. For HIPAA
covered entities, the data collection done by registries is
considered part of “healthcare operations.” Therefore, the
patient does not have to sign an authorization for release of
protected health information (PHI) to be included in the
registry. Reporting of notifiable diseases to the state also comes
under “healthcare operations” and does not require patient
authorization for release (Anonymous 2003). Release of
information to requestors other than the state will depend on the
requestor. Data may be released to internal users, such as
physicians for research, without the patient’s consent as well
because research also comes under “healthcare operations.”
External users, such as the American College of Surgeons,
collect aggregate data from facilities, so individual patient
authorization is not required. Information about patients that
may be included in registries or other secondary data sources
and reported to outside entities must be included in the
facility’s Notice of Privacy Practices given to patients on their
initial encounters. Through this mechanism, patients are made
aware that data about them may be reported to outside entities.

(More information about HIPAA privacy regulations may be
found in chapter 13.)
Entities Not Covered by HIPAA
Not all registries and databases are covered under HIPAA if the
organization maintaining them does not bill for patient care
services. Central registries would be an example of registries
that are not covered under HIPAA. In such cases, the general
norms for data confidentiality should be followed.
Data Definitions and Standards
The use of uniform terminology is an important way to improve
data reliability. This has been evident in case definition for
registries. The criteria for including a patient in a registry must
have a clear definition. Definitions for terms such as race, for
example, must include the categories to be used in determining
race. If uniform terms are not used, the data will not be
consistent. Also, it will be impossible to make comparisons
between systems if uniform terms have not been used for all
data. A data dictionary in which all data elements are defined
helps ensure that uniform data definitions are being followed.
Rights of Stakeholders to Rights of Access, Use, and Control
In the past, a great deal of emphasis has been placed on who
owned the data—both primary and secondary. With the primary
data source—the patient health record—the consensus was that
the facility owned the patient record while the patient controlled
its use. This consensus has broken down, however, with
extensive use of data from the primary data source in secondary
data banks that were unknown to patients, much less under their
control.
Emphasis has switched to the rights of stakeholders regarding
access, use, and control of both primary and secondary data. A
stakeholder is someone who is affected by an issue. In the field
of health data, the main stakeholders are patients and providers.
In looking back at the four main purposes of collecting
secondary data, it is evident that researchers and governments
are also stakeholders in this arena.
Patients must be informed that they do not have exclusive

ownership of their information but have the right to know what
is collected about them and what uses are made of the data.
Transparency refers to the degree to which patients included in
secondary data sets are aware of their inclusion. In its report,
Toward a National Framework for the Secondary Use of Health
Data, the American Medical Informatics Association (2006) has
recommended that full disclosure be the policy for all secondary
uses of data.
Providers must be aware that patients have rights regarding
their patient records to access what is collected about them as
well as to amend or correct erroneous information. Patients
have a limited right to determine who has access to their
primary data. This right is limited by laws and regulations
allowing access to data by governments, researchers, and other
legitimate users of the data (Burrington-Brown et al. 2007).
1. Using uniform terminology is a way to improve:
A. Validity
B. Data timeliness
C. Audit trails
D. Data reliability
2. Which of the following is a true statement about data
stewardship?
A. HIM professionals are not qualified to address data
stewardship issues.
B. Data stewardship addresses the needs of the healthcare
organization but not the patient.
C. HIM professionals have worked with many data
stewardship issues for years.
D. Data stewardship excludes privacy issues.
3. What is used to check the quality of data entered into an
information system?
A. Edits
B. Interrater reliability
C. Audit trail
D. Validity

Instructions: Indicate whether the following statements are
true or false (T or F).
4. _______ Now that registries and databases are almost
universally electronic, data collection is done manually.
5. _______ One advantage to a vendor system is that
purchasers can find out about the system’s performance from
other users.
6. _______ With regard to data quality, validity refers to
the consistency of the data.
7. _______ Among the HIM professional’s traditional
roles is that of maintaining the confidentiality of health data.
Real-World Case
Hundreds of hospitals, clinics, and health departments
automatically report certain symptoms and diagnoses to the
government each day. This practice of biosurveillance helps
officials track the spread of flu, detect outbreaks, and watch for
odd symptoms that might signal a brand new disease or
bioterrorism. Although information is reported each day,
doctors rarely know what their colleagues nearby are
diagnosing. Instead they often call the health department to ask
if anyone’s heard of any outbreak of certain cases. Work is
being done to create a mechanism to track diseases before they
become outbreaks (USA Today 2011).
Researchers are now working on technology that will link local
biosurveillance to electronic health records, and even mobile
applications. Providing data on the amount of disease or
infection that is spreading locally can improve diagnosis and
treatment methods.
Federal health officials are working to create an easy-to-use
web tool that will allow doctors to search for local surveillance
information. Websites such as Google Flu Trends and
HealthMap offer a free web service that tracks the number of
influenza and other cases in an area (Guth 2008).
Summary
Health records contain extensive information about individual
patients but are difficult to use when attempting to perceive

trends in care or quality. With the advent of greater use of the
EHR, it is possible to collect data once and use them many
times for a variety of purposes. Secondary data are used for
quality, performance, and patient safety; research; and
population health and administration.
One type of secondary record is the index. An index is a report
from the hospital database that provides information on patients
and allows retrieval by diagnosis, procedure, or physician.
Health information management departments routinely produce
indexes.
Disease registries are developed when extensive information is
needed about specific diagnoses, procedures, or conditions.
They are commonly used for research and to improve patient
care and health status. From the database created through the
data collection process, reports can be developed to answer
questions regarding patient care or issues such as rates of
immunization and birth defects. In some cases, patient follow-
up is done to assess survival rates and quality of life after a
disease or accident.
HIM professionals perform a variety of roles in relation to
registries. In some cases, they work on setting up the registry.
Moreover, they may work in data collection and management of
registry functions. HIM professionals are well suited to such
positions because of their background and training in
management, patient health record content, regulatory and legal
compliance, and medical science and terminology.
Today, organizations and institutions of all types commonly
maintain databases pertaining to healthcare. At the federal
level, some administrative databases provide data and
information for decisions regarding claims and practitioner
credentialing. Other databases focus on the public health area,
using data collected at the local level and shared with states and
the federal government. These databases assist in government
surveillance of health status in the United States. Some
databases, such as the clinical trials database, are mandated by
law and help patients and providers to locate clinical trials

regardless of source or location.
Registries and databases raise a number of managerial issues.
Data collection is often time-consuming, so some databases now
use automated entry methods. In addition, decisions must be
made between vendor and facility-specific products. Data use
and reuse raises issues related to data stewardship including the
quality, confidentiality, and security of the data. Issues
concerning the access, use, and control of secondary data have
become more pressing. Health information managers must
embrace a leadership role as data stewards.
References
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http://www.ahrq.gov/data/hcup/
American College of Surgeons Commission on Cancer. 2011.
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American College of Surgeons National Trauma Data Bank.
2011. http://www.facs.org/trauma/ntdb/index.html
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http://www.facs.org/trauma/index.html
American Joint Committee on Cancer. 2009. AJCC home page.
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American Medical Informatics Association. 2006. Toward a
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Centers for Disease Control. nd. Program Manual: National
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http://www.cdc.gov/cancer/npcr/pdf/program_manual.pdf
Centers for Disease Control. 2011a. National Center for Health
Statistics. http://www.cdc.gov/nchs/nhds/about_nhds.htm
Centers for Disease Control. 2011b. National Immunization

Program. http://www.cdc.gov/vaccines/programs/iis/default.htm
Centers for Disease Control. 2012. National Center for Health
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Centers for Medicare and Medicaid Services. 2011.
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Clinicaltrials.gov. 2009. Home page.
http://www.clinicaltrials.gov
CNBC. 2012.
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Department of Health and Human Services. 2010. Fact Sheet on
the Healthcare Protection and Integrity Data Bank.
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Section1921.pdf
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AGA%20Registry.html
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bok1_044422.pdf
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