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The health care delivery system continues to evolve in both size and complexity, projected to reach 18% of the gross domestic product of the United States by 2012. The system is an elaborate and dynamic mosaic composed of consumers with diverse needs and an increasing array of providers in multiple types of facilities and locations, as well as an intricate management system monitored by payers, regulators, and accrediting bodies. Working together, their goal is to provide consumers with high-quality care that is accessible and cost-effective.

The patient record is the information centerpiece of the health care decision-making process, both for individual patient treatment and for its potential to collect or aggregate data (which does not identify any specific patients) for research and other purposes. In either electronic or paper form, it contains the essential data and information to answer the key questions related to the who, what, when, where, why, and how of patient care (Box 4-1).

Box 4-1

ESSENTIAL HEALTH DATA AND INFORMATION QUESTIONS

Who?

Who are the patient, the provider, and the payer?

What?

What services were provided and at what cost?

When?

When were the services provided?

Where?

Where were the services provided?

Why?

Why were the services provided, or what was the justification for the services?

How?

How effective were the services, or what was the outcome?

Health data users and uses

Users and uses of health data

There are many users—both individuals and groups—who rely on health data and who demand quality in the data collected, analyzed, interpreted, and reported, including those described in this section. Figure 4-1 illustrates this environment and the numerous external forces that influence the patient’s care and its documentation.

Figure 4-1 The influence of the health care environment on patient care and its documentation.

Patients

Patients use their medical data to understand their health care and to become more active partners in maintaining or improving their health. Data can also be used in monitoring care when additional treatment is necessary. For example, patients with diabetes or hypertension can make a difference by actively participating in controlling and monitoring their condition. Data are also used by patients to document the services received, to serve as proof of identity or disability, and to verify billed services. The American Health Information Management Association (AHIMA) has taken an advocacy position in promoting understanding of the personal health record (PHR) through its consumer education programs and a related Web site (http://www.myPHR.com).

Health care practitioners

Physicians, nurses, and other clinicians who are treating the patient use the record as a primary means of communication among themselves. Practitioners at the follow-up facility or agency to which the patient is transferred after discharge rely on the data for continuing care. In a residential facility, nursing staff review and evaluate the data to develop care plans outlining important nursing interventions. Health care practitioners in every setting use the clinical record as a resource.

Health care providers and administrators

The term health care provider is broad based. It includes organizations that deliver health care services, such as hospitals, outpatient clinics, long-term care facilities, home care agencies, and hospices. Providers also can be individual practitioners. The health record collects the data that document the provision of services. Providers use these data to evaluate care, monitor the use of resources, and receive payment for services rendered. Administrators analyze financial and patient case mix information for business planning and marketing activities.

Third-party payers

Data are the basis of claims processing to pay for the health care services provided. Third-party payers include private insurance companies, managed-care organizations (MCOs), and fiscal intermediaries who process claims for Medicare and Medicaid. Because the purpose of health data is to document the steps taken to prevent illness and promote wellness and the course of illness and treatment, the data become the basis for determining the appropriate payment to be made. Although capitated care may change the current billing systems, payers still want to know the services provided for the dollars spent. Even if transaction-based bills as we know them today disappear, data will be needed to document services provided. Billing data are currently the basis for reporting and managing costs of care. Payers for government insurance plans (i.e., Medicare and Medicaid) also actively monitor the appropriateness of the care and services given to a patient.

Utilization and case managers

Health care data include descriptions of care given and the justification for services. All organizational resources, including supplies, equipment, services, and providers, can be taken into consideration in a utilization review. Case management seeks to coordinate care so that the patient is cared for in the most clinically cost-effective manner. The emphasis is on disease management, especially for patients with chronic problems. Criteria are available for some facets of the case management process, such as admission, continued stay, and discharge from an inpatient facility and day-to-day management of specific chronic problems.

Quality of care committees

It is essential that the delivery of health care be monitored continuously—both concurrently and retrospectively. The basis for these reviews and the performance of quality assessment is the data recorded at the time care is given. Quality assessment and improvement committees use the information as a basis for analysis, study, and evaluation of the quality of care given to the patient. Recent studies by the Institute of Medicine (IOM) on patient safety have increased the focus on these efforts. The National Physician Data Bank uses secondary health care data to ensure that only qualified physicians practice medicine.

Accrediting, licensing, and certifying agencies

Accrediting, licensing, and certifying agencies review patient records to provide public assurance that quality health care is being provided. The data serve as evidence in assessing compliance with standards of care and in accrediting and licensing various health care organizations.

Governmental agencies and public health

Governmental agencies at the local, state, and federal levels use health care data to determine the appropriate use of governmental financial resources for health care facilities and educational and correctional institutions. Reviews are done on a continuing and retrospective basis. Public health is concerned with threats to the overall health of a community on the basis of population-based health data analysis in contrast to medical health care, which focuses on the treatment of the individual. Governments at all levels establish public health departments and programs that include surveillance and control of infectious disease, prevention such as vaccination programs, and promotion of healthy behaviors.

Health information exchanges

Health information exchanges (HIEs), also called regional health information organizations (RHIOs), are collaborations to move clinical data across various health information systems within a geographic area. A variety of models are emerging, with a number projects being developed at the state level. The goal of the partner organizations is to provide patient-centered care that improves quality, safety, efficiency, timeliness, and accessibility. HIEs and RHIOs use common, nonproprietary standards for content and exchange and are the building blocks of the U.S. National Health Information Network (NHIN).

Employers

Health care data are used to evaluate and assess job-related conditions and injuries and to determine occupational hazards that may impede effective performance in the workplace. Employers also use the data to determine the extent of employee disabilities, to improve working conditions, and to manage employee benefit programs. The cost of health care benefits to both employers and employees has continued to rise. Health data are used to select health insurance companies, evaluate quality, and manage costs.

Attorneys and the courts in the judicial process

Attorneys and the courts use the records as documentary evidence of a patient’s course of treatment to protect the legal interests of the patient, health care providers, treating facility, and the public. Health care data are often the basis of evidence for the adjudication of both civil and criminal cases. The documentation may support the claims made by the individuals in a case, and it is often the only evidence available. In addition, data may aid in determining the need for admission of the mentally ill for treatment.

Planners and policy developers

State health departments use information related to vital statistics, disease incidence and prevalence, reports of child and elder abuse, and so on to provide aggregate data for public policy development and for intervention in individual situations as needed. Data are the basis for supporting the continuing need for services and the addition of new services by a health care organization. Health care delivery is a dynamic process that requires the evaluation of current needs and future demands for the individual provider and the community in general.

Educators and trainers

Within the health care setting, many individuals are learning the skills of quality health care service delivery. Data documentation assists these people in tying the theory learned in the classroom to the practical aspects of care. Conferences and presentations about care already delivered are useful in training health care personnel. Data from the patient record are the basis for many continuing education programs and conferences that review treatment outcomes.

Researchers and epidemiologists

Clinical research is a significant aspect of the improvement of care and assessment of the effectiveness of treatment and improved methods for future care. Researchers may also study the cost-effectiveness of patient care, review patient outcomes, and assess the use of technology. Epidemiologists help with early disease detection such as an outbreak of Escherichia coli infections. Health services research and policy studies provide information regarding the health care system.

Media reporters

Radio, television, print, and Web-based journalists report data that the public needs to know, such as health hazards, diseases that affect public health, and new developments in medical research.

Decision making

Used in every setting in which care is provided, the data in the patient record are the essential resource for clinical and administrative decisions. This data are often arranged and displayed to meet the needs to various users.

Knowledge hierarchy

Data are gathered consistent with the characteristics of data quality, arranged and displayed to add context and create useful information, given meaning leading to knowledge, and acted on with insight to make wise decisions. This progression is referred to as the Knowledge Hierarchy or DIKW (data, information, knowledge, wisdom) pyramid and is attributed to Ackoff.1 Figure 4-2 includes the value added at each step and an example illustrating the use of birth certificate data, including weight, to reduce the number of low-birth-weight babies. Definitions of the levels vary with more agreement at the levels of data and information.

Figure 4-2 Data-Information-Knowledge-Wisdom (DIKW) pyramid and value added.

Definitions

Data are a collection of elements on a given subject; the raw facts and figures expressed in text, numbers, symbols, and images; and facts, ideas, or concepts that can be captured, communicated, and processed either manually or electronically. Elements are consistent with the characteristics of data quality. The subsequent levels depend on this foundation. The word data is plural and is used whenever more than one data element is described. Datum appropriately describes a single data element.

Information is data that have been processed into meaningful form—either manually or by computer—to make them valuable to the user. Data and information are not synonymous. Information adds context to a representation and tells the recipient something that was not known before. For example, graphing blood sugar levels over time reveals a trend not apparent from individual values. What is information for one person may not be information for another.

Knowledge is information that is further enhanced with meaning. Information is more clearly understood, such that it explains the how and the why about something. Knowledge bases are increasingly available as resources for both clinicians and administrative staff as part of information systems and electronic health records.

Wisdom places knowledge in a framework to allow it to be applied in different situations in a measurable way to make wiser decisions and to establish and reach goals.

Decision-making process

Effective decision making proceeds through the following steps:

1. Problem identification

2. Data collection and analysis

3. Development of alternatives

4. Selection of the best alternative

5. Action

6. Follow-up and evaluation

Data collection is not an isolated function. It has a significant impact on both the efficiency and the effectiveness of the decision-making process. Well-defined and accurately collected data enhance the likelihood of an effective decision but do not guarantee it.

Overseeing the use of patient data in planning, management, and research has long been the purview of health information managers. To be efficient, health information management (HIM) professionals must carefully consider the purposes for data collection and gather sufficient data items, but no more than required. Significant costs are associated with data collection, including staff time for entry, review, and management and computer time and storage. Cost-effectiveness requires resistance to the “more-is-better” philosophy. The only reason to collect data is to satisfy an identified need for the retention, retrieval, and use of data and to generate meaningful information and knowledge. After the essential data items are identified, it is generally agreed that data should be captured only once and used by all portions of the system that require access to that particular data item. Health care documentation is often done in narrative form, which requires extraction of key pieces of data. Advances in electronic health records will permit the combination of discrete data fields with narrative content to add context. As we standardize health data and as systems become more astute at automating the data extraction process, clinical data will be even more available.

The wide variety of uses for the data in the patient record provide the HIM manager with the challenge of collecting the necessary data to support and promote the efficiency and effectiveness on behalf of the patient, the provider, and the facility, as well as public health. Each of these constituencies benefits from the reliability and validity promoted by consistent definitions of data elements. Such definitions aid in facilitating data exchange and reducing misunderstandings. Standards are the foundation of a consistent data collection plan that supports the needs of individuals, organizations, and the health care delivery system at large.

SELF-ASSESSMENT

1. Which users require patient-identifiable data, and which do not?

2. Why are data standards key to meeting the needs of multiple stakeholders?

3. Are data and information synonyms? If not, why not?

Overview of the patient record

The unique roles of the patient health record

A patient’s health record plays five unique roles 2:

1. It represents that patient’s health history; that is, it is a record of the patient’s health status and the health services provided over time.

2. It provides a method for clinical communication and care planning among the individual health care practitioners serving the patient.

3. It serves as the legal document describing the health care services provided.

4. It is a source of data for clinical, health services, and outcomes research.

5. It serves as a major resource for health care practitioner education.

Patient health record

The patient health record collects the data and information and generates reports—either on paper or electronically—on a single patient. It is the primary legal record documenting the health care services provided to a person in any aspect of the health care system. The term includes routine clinical or office records, records of care in any health-related setting, preventive care, lifestyle evaluation, research protocols, and various clinical databases. This repository of information is generated by health care practitioners as a direct result of interaction with the patient or with individuals who have personal knowledge of the patient (or with both). The record contains information about the patient and other individuals as they relate to the health of the patient. The term patient health record is generally synonymous with medical record, health record, patient care record, primary patient record, client record, and resident record. It should be noted that health record is a more comprehensive term that includes prevention and screening data whereas medical record more typically refers to encounters related to illness.

Primary patient record

The primary patient record is the record that is used by health care practitioners while providing patient care services to review patient data or document their own observations, actions, or instructions.

Secondary patient record

The secondary patient record is a subset that is derived from the primary record and contains selected data elements. Such secondary records or databases aid both clinicians and nonclinical individuals (that is, those not involved in direct patient care) in supporting, evaluating, and advancing patient care. Patient care support refers to administration, regulation, and payment functions. Patient care evaluation refers to quality assurance, utilization review, and medical or legal audits. Patient care advancement refers to research.

Legal health record

As mentioned earlier, the health record is the primary business record created by and for a health care organization. As content and media have become more complex, the boundaries of the health record have become less clear. To address these emerging issues, AHIMA appointed a task force, subsequently publishing the “Practice Brief on the Legal Health Record” (LHR).3 The resulting guidance is that the LHR is the portion of the record that will be disclosed, with appropriate authorization, to parties outside the organization. It is the responsibility of each organization to define its LHR.

Longitudinal patient record

The longitudinal patient record is a comprehensive patient record compiled and accessible over the individual’s life span from birth to death. It is a valuable resource for clinical decision making that provides easy access to medical history, contains costs by reducing repeated diagnostic testing and treatments, and promotes patient safety through medical alerts and information on allergies, drug reactions, and drug-drug or drug-food interactions.

Paper-based records have been unable to achieve the advantages of longitudinal records because of their lack of standardization, difficulty in organizing, and limited access. One of the substantial advantages of moving to an electronic health record (EHR), or linkage of records, is the opportunity to create longitudinal patient records. The Veterans Administration has led the way in creating longitudinal electronic patient records to serve its patient population.

Data collection standards

The patient health record is currently a combination of discrete data elements and narrative in mixed media, including paper, electronic, voice, images, and waveforms. A variety of organizations and agencies in the public and private sectors are engaged in extensive efforts to standardize the record, including the development of data content and collection standards.

Governmental

Efforts to standardize health care data have existed since early efforts to record mortality and then morbidity data. Beginning in the 1990s, striking changes occurred in health and health care and in health data and information systems. Both the national environment for health information systems and the nature of the information systems have changed dramatically. The new electronic information environment is raising new privacy issues and magnifying the importance of ensuring that current policies are appropriate for new technologies.

One must keep in mind that although various agencies, committees, organizations, and individuals are working to develop new standards, others are currently collecting data at an accelerating rate. Multiple governmental, professional, and private groups are working toward a consensus on standards for both record content and electronic data transfer. It behooves all stakeholders to be aware of the goals, mandates, and activities of the others and to maintain effective communication within the health information community. The AHIMA works diligently representing its membership in these areas.

Department of health and human services

Collection, analysis, and dissemination of health-related information are crucial aspects of the responsibilities of the Department of Health and Human Services (DHHS; http://www.hhs.gov). The DHHS also plays a national leadership role in health data standards and health information privacy policy and is charged with the responsibility for implementation of the administrative simplification provisions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). In addition, the DHHS engages in cooperative efforts with standards organizations, professional organizations, state and local governments, other countries, and the international community to foster health data standards, comparability, and cross-national research. Figure 4-3 illustrates the scope of the federal government’s involvement in health data standard activities.

Figure 4-3 Federal and private sector activities that support the development and use of standards for electronic health record systems.

Centers for medicare and medicaid services

The Centers for Medicare and Medicaid Services (CMS) is the DHHS division responsible for developing and enforcing regulations, including the Conditions of Participation (CoPs) and Conditions for Coverage (CfCs) that health care organizations must meet to begin and continue participating in the Medicare and Medicaid programs (http://www.cms.hhs.gov). These minimum health and safety standards are the foundation for improving quality and protecting the health and safety of beneficiaries. CMS also ensures that the standards of accrediting organizations recognized by CMS (through a process called deeming) meet or exceed the Medicare standards set forth in the CoPs/CfCs.

Health and human services data council

The DHHS Data Council coordinates all health and nonhealth data collection and analysis activities of the department, including an integrated health data collection strategy, coordination of health data standards, and health information and privacy policy issues, including the administrative simplification provisions of HIPAA.

National committee on vital and health statistics

The National Committee on Vital and Health Statistics (NCVHS) is the statutory public advisory body to DHHS on health data, statistics, and national health information policy. This committee serves as a national forum for the collaboration of interested parties to accelerate the evolution of public and private health information systems toward more uniform, shared data standards within a framework protecting privacy and security. The NCVHS encourages the evolution of a shared, public-private national health information infrastructure that will promote the availability of valid, credible, timely, and comparable health data. With sensitivity to policy considerations and priorities, the NCVHS provides scientific and technical advice and guidance regarding the design and operation of health statistics and information systems and services and coordination of health data requirements. It also assists and advises DHHS on HIPAA implementation and informs decision making about data policy by DHHS, states, local governments, and the private sector.

National center for health statistics

To clarify the names and acronyms, mention is made here of the National Center for Health Statistics (NCHS), which may easily be confused with the NCVHS. The NCHS is a part of the Centers for Disease Control and Prevention (CDC) of the DHHS, and it is the federal government’s principal vital and health statistics agency. The NCHS provides a wide variety of data with which to monitor the nation’s health. Although the data provided by the NCHS are used by policy makers in Congress and the administration, medical researchers, and others in the health community, the NCHS should not be mistaken for the NCVHS, which is a public policy advisory board.

Overview of information and data sets

The NCVHS has been the leading government agency in the area of standardization of health information, primarily through uniform data sets, since its initial charter in the 1950s. It addresses the need for uniform, comparable standards across geographic areas, populations, systems, institutions, and sites of care to maximize the effectiveness of health promotion and care and minimize the burden on those responsible for generating the data. To this end, the NCVHS has advised the DHHS on such matters as federal-state relationships, nomenclatures and classification systems, core data sets, and access and confidentiality issues.

The data sets promulgated by the NCVHS have become de facto standards in their areas for data collection by federal and state agencies and by public and private data-abstracting organizations. They have influenced both the Conditions of Participation and the claim forms on which Medicare and Medicaid data sets are based. Table 4-1 lists the existing federal data sets, which are discussed in detail later in this chapter. These data sets are intended to describe significant minimal data about patients, residents, or clients. It is important to remember, however, that, although these data are essential to the patient record and patient care, additional data are necessary for a comprehensive record that supports the delivery of that care.

Table 4-1

FEDERAL INFORMATION AND DATA SETS

Acronym	Name	Purpose
DEEDS	Data Elements for Emergency Department Systems	Uniform specifications for data entered into hospital emergency department records
MDS	Minimum Data Set for Long-Term Care	Comprehensive functional assessment of long-term care patients
OASIS	Outcome and Assessment Information Set	Core items of comprehensive assessment for adult home care patients; forms basis for measuring patient outcomes
UACDS	Uniform Ambulatory Care Data Set	Improve ability to compare data in ambulatory care settings
UHDDS	Uniform Hospital Discharge Data Set	Uniform collection of data on inpatients; used by federal and state agencies

Core health data elements

The achievements of the NCVHS regarding minimum data sets have been significant. However, the ever-expanding sites of care, combined with the increasing use of electronic data, have made it imperative that all health data collection activities, when possible, use standardized data elements and definitions. Standardized data elements are also vitally important in the managed care field, in which there is a need to follow individuals through a continuum of care and at multiple sites. Performance monitoring and outcomes research are two additional areas that are currently hampered by the inability to link data sets from various sources because of varying data elements and definitions.

In 1996, the NCVHS completed a 2-year project to review the current state of health-related core data sets and to promote consensus by identifying areas of agreement on core health data elements and definitions. The goal has been to develop a set of data elements with agreed-on standardized definitions, not to specify a data set for mandated external reporting. The list of recommended data elements is by no means exhaustive and, unlike the result of earlier activities, is not a “data set” to be used in a specific setting.4

The 42 data elements are listed in Table 4-2. Appendix 4-A provides the complete list, including a rationale and discussion for each element, which is particularly helpful in understanding the wide range of issues involved. They contain the elements selected for the first phase of this process and apply to persons seen in both ambulatory and inpatient settings unless otherwise specified. Consensus has been reached on definitions for the majority of these elements; for others, definitions must still be finalized; for a third group, additional study and testing are necessary. The rationale and discussion sections provide valuable insight into the issues of data standardization. For the first 12 elements, with the exception of a unique identifier, information may not have to be collected at each encounter. Standard electronic formats are recommended to the extent that they have been developed. A column has been added to provide comparison with the American Society for Testing and Materials (ASTM) International Standard E1384-07, which is described in more detail in Chapter 5.