Secondary Data Source Findings

HI300 Unit 6: Secondary Data Sources – Discussion

Secondary Data Source Findings



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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


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”




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.

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 ( 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
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

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

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


Type of Setting


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


National Nursing Home Survey

Nursing home

Data on the facility, current and discharged residents


Nurse caregiver


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


National Home and Hospice Care Survey

Home health and hospice

Facility data and patient data

Administrator Caregiver



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 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 ( 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 Although 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.
Check Your Understanding 8.2

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
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).
Check Your Understanding 8.3

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).

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.

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Guth, R.A. 2008 (November 12). Sniffling surfing: Google unveils flu-bug tracker. Wall Street Journal.

Healthcare Costs and Utilization Project. 2009.

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Mon, D. 2007. Development of a national health data stewardship entity: Response to request for information. Chicago: AHIMA.

National Cancer Registrars Association. 2009. NCRA home page.

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USA Today. 2011. Tracking diseases before they become outbreaks. become-outbreaks/50475608/1
Additional Resources

American Gastroenterological Association. 2011. AGA digestive health outcomes registry.

Department of Health and Human Services. 2010. The national hospital care survey. Federal Register 75(226).