Lesson

Health records contain extensive information about individual patients, but they are difficult to use when attempting to perceive trends in care or quality. For that reason, registries and databases were developed. One type of secondary database is the index. An index is a report from the hospital database that provides information about patients and retrieval by diagnosis, procedure, or physician. Health information management departments routinely produce indexes.

Some key terms that are important when discussing data sets are data, data element, information, and aggregate data.

• Data: Basic facts or measurements
• Data element: A single fact or measurement, singular
• Information: Data that are collected, combined, analyzed, interpreted, and/or converted into a form that can be used for specific purposes
• Aggregate data: Data extracted from individual patient records and combined to form information about groups of patients
• Data set: List of recommended data elements with uniform definitions

The first historical efforts to collect and use healthcare data to produce meaningful statistics began with the Bills of Mortality. The Bills of Mortality was a study collected by Captain John Graunt on the common causes of death in London. This study led to a more modern collection of data via discharge data sets, as well as birth and death sets.

Standardization of the collection of data became prominent during the 1960s, and data sets were developed for a variety of healthcare settings. Data from various facilities were compared for external accreditation, internal performance improvement, and statistical and research studies. In healthcare, data sets are maintained to identify data elements that should be collected for each patient and to provide uniform definitions for common terms. The most prominently and widely used standardized data sets are UHDDS, UACDS, MDS 2.0, HEDIS, ORYX, OASIS, DEEDS, and EMEDS.

As our profession continues to transition from paper-based health records to electronic health records, standards for electronic exchange (data sets) have evolved. The National Committee on Vital and Health Statistics (NCVHS) began the movement of standardization of data sets in the 1960s for paper-based records. These standards were designed to accommodate the data needs for the current healthcare delivery system or the demands of computer-based patient record (CPR) systems. To fulfill the present demand of CPR, national data set standards were modernized in areas to include vocabulary, structure and content, messaging (electronic data exchange, electronic data interchange), and security standards.

Organizations involved in the development of healthcare informatics standards are referred to as standards development organizations (SDOs). The most eminent SDOs are

• American Society for Testing and Materials (ASTM);
• Health Level Seven (HL7);
• American National Standards Institute (ANSI);
• Health Information Standards Planning Board (HISPB); and
  
• United Nations International Standards Organization (ISO).

Among these standard development organizations, ASTM and HL7 are most notable for developing security standards. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) mandated the adoption of privacy and security standards for health information. A comprehensive security standard for electronic health data was developed by the Department of Health and Human Services (DHHS), but it has not yet been adopted. There are various agencies that influence the development of healthcare informatics standards, including the Centers for Medicare and Medicaid Services (CMS), the Food and Drug Administration (FDA), and the Agency for Healthcare Policy and Research (AHCPR).

Other standards that must be taken into consideration are identifier standards, communication standards, and clinical data representation (codes). Codes used to represent clinical information are ICD-9-CM, ICD-10-CM, and CPT/HCPCS codes. Aggregated codes are used to communicate patient-identifiable information among healthcare organizations, payers, researchers, policy makers, and government agencies.

Disease registries are developed when extensive information is needed about a specific diagnosis, procedure, or condition. 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.

Probably the most common registry found in hospitals is the cancer registry. This registry maintains statistical data on all patients treated for cancer within a facility. It is a requirement for a hospital to have a cancer registry as a part of an approved cancer program. Cases are identified from diagnosis indexes, pathology reports, and various internal hospital documents. Whereas historically these data were abstracted manually by abstractors, today most have electronic input and reporting.

Registries are also maintained by private and governmental agencies.

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 the management of registry functions. HIM professionals are well suited to such positions because of their background and training in management, 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. Finally, the quality of the data is an important issue, because the decisions made based on data in registries and databases depend on the data's validity, reliability, accuracy, and timeliness.

An important issue related to registries and databases is the security of the data. Facilities must adopt methods that will ensure controlled access to data as well as methods that will prevent the loss of data. Security measures, such as passwords, passcodes, and encryption, must be employed to ensure that the reporting of information from databases is secure.

In the future, separate registries and databases may become less common with the arrival of computer-based patient record systems. A large database, the CPR can be queried directly rather than first abstracting data from the primary record into a secondary record.