Health care organizations benchmark or compare their organizations against peer organizations that are known for their excellence. In today’s competitive environment with the focus on patient safety and the required reporting of patient safety and quality indicators, benchmarking has become a common tool in health care organizations. Benchmarking is discussed in more detail in Chapter 12.

Through the efforts of the Centers for Medicare and Medicaid Services (CMS), the Department of Health and Human Resources, and members of the Hospital Quality Alliance (HQA), data on the quality of health care services has been made available to the public with the purpose of making the public a better informed consumer of health care services. This quality tool was developed for Medicare beneficiaries to locate information on how well patients with specific medical condition or undergoing specific procedure are taken care in hospitals but is available publicly for use.2

The Joint Commission uses data from core measures to evaluate the quality improvement process. The data are transmitted to the Joint Commission from the accredited health care organizations. After transmission and evaluation, the quality data are provided to the public. It is also used to assess the Joint Commission accreditation and by health care organizations to internally analyze areas that can be improved.3 Performance measurement is used by health care organizations to evaluate and support performance. It is also used externally, to show accountability to consumers, payers, and accreditation organizations. It provides statistically valid, data-driven information. This enables a health care organization to evaluate itself. This type of information is particularly beneficial to consumers, enabling them to make critical decisions about where to seek quality health care.

For example, a section of the Joint Commission Web site discusses the derivation and reporting of core measures. The Specifications Manual for National Implementation of Hospital Core Measures, Version 2.0, provides information about how the care provided for patients with acute myocardial infarction, heart failure, pneumonia, pregnancy and related conditions, and surgical infection prevention are measured. Information about these areas are continuously monitored and reported to the Joint Commission. The statistics derived from these data is one area of focus that the Joint Commission uses to prepare for an accreditation visit. The CMS is also using core measures to monitor the quality of care for its Medicare beneficiaries.

The Joint Commission’s Web site has a section called “Quality Checks” where anyone can locate the accreditation status of accredited organizations. Consumers can search for accredited organizations to find information about the services provided and the organization’s performance on the basis of various measures, including the core measures.⁴

Similarly, hospital discharge data can be used for strategic planning and outcome analysis. For example, the Intermountain Heath Care System, a nonprofit integrated health system in Salt Lake City, uses statewide data to compare itself with other organizations. Further, the New Hampshire Hospital Association develops an annual market share report. This allows hospitals to evaluate their market position and to determine how to position themselves and reallocate resources in a way that is beneficial to both the institution and the patient population it serves.5

The health care industry is highly regulated, and health care organizations are required to report data to federal, state, and county agencies, as well as voluntarily reporting to accrediting bodies, such as the Joint Commission. As Chapter 1 mentions, the data reported by health care facilities are focused on access, quality, utilization management, patient outcomes, and cost of care. With the federal government’s emphasis on educating the public and making people informed consumers of health care services, it is in the health care facility’s best interest to report accurate data. Public reporting of data from public and private Web sites such as Hospital Compare⁶ and Health Grades⁷ allow consumers to identify facilities with lowest average length of stay, the lowest cost for performing specified services, and the mortality rate of medical and surgical services in the health care facility. Health care organizations also join consortia and share data for benchmarking within their peer groups. This information is not publicly available but is accessible to members only.

A clinical case definition may be established as well. A clinical definition is a list of signs and symptoms that establish a clinical diagnosis. A clinical case may be reported as a reportable disease if it meets the epidemiologic case criteria. In addition to the clinical diagnoses, other criteria may need to be met for the condition to meet the epidemiologic definition. A patient may have the clinical signs and symptoms requiring treatment and yet may not meet the strict definition for reporting designated by the CDC.9

Case definitions are provided for all reportable diseases, and the case definitions for specific types of registries are discussed later in applicable sections of the chapter.

Visual and computerized checks on data entered into the database should be performed by the personnel responsible for the database of the registry. This may be required by the organization external to the registry or simply to ensure that the database has consistent, complete, accurate data. Accuracy and completeness of data are important to ensure data integrity. The value of registry data is directly related to the validity of the data collected. Generally, to ensure data validity, a systematic quality control sampling of 5% to 10% of all cases in the registry should be reviewed for data quality.10 The linkage of computerized information may allow cross-referencing of data to ensure that all cases have been included and that the data elements in the records match other records.

Registries contain patient-identifiable information that is derived from primary patient record information. All information in the registry must be kept confidential. Confidentiality policies and procedures are required in all phases of registry operations and should address protection of the privacy of individual patients, facility information, and the privacy of the physicians and health care providers who report the cases. They should also provide public assurance that the data will not be abused and that all confidentiality-protecting legislation or administrative rule(s) will be enforced. As a result of the Health Insurance Portability and Accountability Act of 1996, health care organizations are required to track patient registry information that is reported externally to state agencies to provide an accounting of disclosures to a patient, if requested.11

The primary goal of hospital-based cancer registries is to improve patient care. The cancer registry provides a system for monitoring all types of cancer diagnosed or treated in an organization. The data collected are used to optimize care for patients with cancer, to compare the institution’s morbidity and survival rates with regional and national statistics, to determine the need for professional and public education programs, and to help allocate resources.8

Hospital-based registries may be in single-institution or multi-institution settings, military hospitals, managed care programs, or free-standing treatment facilities. The patient care-oriented goal usually dictates the type of data collected. Data items collected include patient identification and demographic information, cancer diagnosis, treatment rendered, prognostic factors, and outcome.

A hospital cancer registry is one of the components of a cancer program approved by the ACS Commission on Cancer (CoC). The latest edition of the Cancer Program Standards, available on the CoC’s Web site, delineates the total program requirements.

Go to the Evolve Web site and view the latest edition of the Cancer Program Standards available from the ACS Commission on Cancer.

Hospitals are required by law to report cancer cases to a state registry but not to have an ACS-approved cancer registry. A hospital-based registry may be associated with a population-based registry (such as a registry operated by the state government); the latter often supports and facilitates the hospital’s efforts as a major source of its data. Support from the population-based registry may consist of analyzing data, generating reports that allow comparison of data, providing data collection software, assisting in quality improvement activities, and providing professional training to the hospital cancer registry staff.

The case eligibility for most cancer registries is defined by all the organization’s patients diagnosed (clinically or histologically) or treated for active diseases on or after the reference date or beginning of the registry are eligible for inclusion. For example, patients who were diagnosed and are being treated at the hospital, patients diagnosed at autopsy, patients who were diagnosed elsewhere and are receiving all or part of their first course of therapy or whose therapy was planned at the hospital, and patients who were diagnosed at the hospital and are receiving all their first course of therapy elsewhere should be included in the registry. The registry’s policy and procedure manual will define specifically the types of cases to be included.

When patients are determined eligible and are added to the registry, they are said to be accessioned into the registry. A screen print used to accession a patient is shown in Figure 13-2.

The ability to identify every reportable case of cancer is essential to the success of a cancer registry system.15 The case finding system must include all points of service from when patients enter the health care delivery system for diagnostic or therapeutic services for the management of cancer.¹⁶ The primary case finding sources are the pathology department, HIM department information, and outpatient services areas. As a key resource, cancer registry personnel examine the reports from the pathology department for all pathologic diagnoses of cancer. The types of reports include surgical specimen, autopsy, bone marrow, hematology, and cytology reports. The second most common source is the organization’s database of diagnosis codes. Logs of patients seen in radiation therapy and other outpatient departments are also examined to ensure all cancer patients are identified for inclusion in the registry.

Many population-based registries are, in effect, combinations of all three types. The legislative mandate and funding sources normally dictate the effort expended in any one particular area—incidence monitoring, research, or cancer control.13

The case definition for cancer registries consists of neoplasms that are to be reported to the registry. The best classification system for developing a reportable list for a cancer registry is based on the International Classification of Diseases for Oncology, Third Edition (ICD-O-3).¹⁴ This publication includes the listing of codes for the anatomical site and the behavior of the tumor. The ACS requires that all tumors with a morphology behavior code of 2 or higher, indicating an in situ or a malignant tumor in the ICD-O-3, be included for approved cancer programs.⁸ The medical or research staff associated with the registry may request that other cases be included (e.g., nonmalignant meningiomas, villous adenomas of the colon, benign liver tumors).

Central registries that collect data for the states in the United States each have a cancer registry manual that describes the case definition and case eligibility. For example, in New Jersey, all cases of cancer that were diagnosed after October 1, 1978, are reportable. The exceptions to this requirement are localized skin cancers. In addition, benign and borderline tumors of the brain and central nervous system are also reportable.

The cancer abstract must permit recording of all relevant data in a logical and uniform manner. Abstracting guidelines are provided in the Self Instructional Manual for Tumor Registrars, Book 5, SEER Program,17 and the Registry Operations and Data Standards (ROADS), CoC, ACS, 2004.¹⁶ In addition, most state and regional registries have established abstracting requirements. The amount of data collected is dictated by the CoC for approved cancer programs, policies established by the health care facility’s cancer committee, and the limitations inherent in a specific computer software system (see CoC Data Set). A screen print used in abstracting is shown in Figure 13-3.

The coding scheme traditionally used by cancer registries is the ICD-O-3, published by the World Health Organization (WHO). This coding scheme is recommended by the CoC8 and is used by the National Cancer Registrars Association, Inc. (NCRA) in its annual certification examination.

The ICD-O-3 represents a more detailed extension of the International Classification of Diseases, Tenth Edition, Clinical Modification (ICD-10-CM) chapter on neoplasms. ICD-O-3 permits coding of all neoplasms to include topography (site), morphology (cell structure and form), grading (variation from normal tissue), and differentiation (another term for variation from normal tissue).¹⁵

The extent of the spread of cancer or stage at the time of initial diagnosis and treatment is recorded for every case included in the registry.18 Numerous staging systems have been developed for use by the medical community. Some are site-specific (e.g., Dukes A–D Stage Grouping for Colorectal Cancer) or system specific (e.g., International Federation of Gynecology and Obstetrics [FIGO] classification for gynecologic sites). Others are general and may be applied to almost all sites.

Historically, the staging system most commonly used was developed in 1977 by the SEER Program of the NCI, Self Instructional Manual for Tumor Registrars, Book 6, or the Summary Staging Guide. This system is used to stage cases as in situ, localized, regional spread to lymph nodes or adjacent tissue, or distant spread to lymph nodes in other areas of the body or distant sites. In addition, the CoC requires that all sites, excluding pediatric tumors, be staged according to the current edition of the American Joint Committee on Cancer (AJCC) Manual for Staging of Cancer.^8,19 Registries have the option of using either the AJCC staging scheme for pediatric tumors or nationally accepted protocol staging systems. In the AJCC staging system, the extent of disease is categorized according to tumor size (T), lymph node involvement (N), and metastases (M). Frequently referred to as the TNM system, it brings together information on staging of cancer at various anatomic sites in cooperation with the TNM Committee of the International Union Against Cancer. The proper classification and staging of cancer allow physicians to determine appropriate treatment, evaluate results of case management, and compare outcome with worldwide statistics reported from various institutions on a local, regional, state, and national basis.

Although the TNM system was designed for use by physicians, in some hospitals, staging is performed by the registry staff.^15,20 A working knowledge of both the SEER and the AJCC staging systems is necessary. A patient staging is shown in Figure 13-4.

Figure 13-5 shows the screen print where data from the first course of therapy are entered into the electronic application.

Box 13-1 shows key points regarding staging from NCI.

Box 13-1

KEY POINTS REGARDING STAGING FROM NATIONAL CANCER INSTITUTE

• Staging describes the extent or severity of an individual’s cancer. Knowing the stage of the disease helps the doctor plan a person’s treatment and estimate prognosis.

• Staging systems for cancer have evolved over time and continue to change as scientists learn more about cancer.

• The TNM staging system is based on the extent of the tumor (T), spread to lymph nodes (N), and metastasis (spread to other parts of the body) (M).

• Most cancers can be described as stage 0, stage I, stage II, stage III, or stage IV.

• Physical exams, imaging procedures, laboratory tests, pathology reports, and surgical reports provide information to determine the stage of the cancer.

Source: National Cancer Institute.18

The cancer committee is responsible for establishing the quality improvement priorities of the cancer program and for monitoring the effectiveness of quality improvement activities.8 The cancer committee is required to identify at least two important issues related to cancer patient care to evaluate annually. At least one priority should be related to site-specific patient survival rates. Sources to be used in selecting quality improvement priorities include comparison of local experience with regional and national survival and outcome data. This benchmarking provides insight into whether the care given at the hospital meets or exceeds that given elsewhere. These measures should be used to evaluate compliance with treatment. The cancer committee evaluates the results of the measurement activities to assess current performance and to evaluate the need for interventions aimed at reducing or eliminating poor performance.

The usefulness of the data collected by a registry depends on the quality of the data. Quality control procedures are important to ensure the completeness, accuracy, and timeliness of the data collected. The CoC places accountability for quality control of registry data with the cancer committee because it is responsible for the overall supervision of the cancer registry.⁸

It is the policy of many registries to perform visual inspection on 100% of their cases. In large registries, a review or reabstracting of a portion of the cases by another member of the registry staff ensures consistent recording and interpretation of information. In the latter instance, the two abstracts are compared, and discrepancies are noted and discussed.¹⁵

Computerized registries have quality management tools for edits and computer-assisted coding. Registry staff must not rely solely on the electronic tools for quality management because, as of yet, computers are unable to read the documentation to determine completeness, accuracy, and support for the coded data.

The data collection component encompasses the data items required by the CoC for approved hospital programs. Optional data fields might include hospital-specific, financial, and the Joint Commission clinical indicators. Other features available from some vendors consist of multiple-user networks, hospital mainframe interface, expanded statistical applications, and graphics. Some hospital software vendors maintain national databases that contain aggregate data submitted by their users. The Tumor Registry Software Checklist presented at the 1993 annual meeting of the National Cancer Registrars Association, Inc., can be used by hospitals to evaluate cancer registry software (see Figure 13-6).

The North American Association of Central Cancer Registries, Inc. (NAACCR) has developed a national standard for data exchange. The NAACCR Record Layout provides a common standard record layout that can be used for the electronic exchange of data.21 The NAACCR Record Layout has been used by the ACS Commission on National Cancer Data Base (NCDB) Call for Data. Participation in the NCDB became a mandatory standard of the ACS Approvals Program beginning with the 1996 data year.