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This chapter traces the evolution of the patient record and the health information management (HIM) profession in the United States to its current status. The primary professional association for HIM professionals in the United States is the American Health Information Management Association (AHIMA). Its mission and role in accreditation of educational programs, credentialing of professionals, support of professional development opportunities, code of ethics, and key initiatives to move the profession forward are discussed. The history of the profession (that is, a discipline that has formalized itself through specialized educational training and a specific code of conduct) is intricately linked to the development of landmark changes in the health care system. The roles of HIM professionals are diverse, and the variety of opportunities has increased in ways the early founders of the profession could never have imagined. However, one main thread continues to bind the past to the future—the goal of supporting quality health care through quality information.

Health information management—a profession in transformation

The HIM profession and the health care industry in general are experiencing a fundamental change in the way health care data and information are collected, processed, communicated, and managed as a result of advances in information and communication technology. The paper-based patient record environment is transitioning to an electronic health record (EHR) environment to support patient safety, improve patient care, control health care costs, and provide better public health surveillance. Recent legislation such as the American Recovery and Reinvestment Act (ARRA) and Health Insurance Portability and Accountability Act (HIPAA) have had an impact on the changing nature of the health care industry’s information infrastructure and are driving a transformation in the roles and functions of HIM practice. Although this change is occurring, the fundamental values of the profession remain intact. The profession’s focus from its inception in 1928 has been on improving patient care through better documentation and protecting the privacy, confidentiality, and security of patient information. Today, HIM professionals articulate the same values as they work collaboratively with others in health care and those involved in health informatics to establish a health care information infrastructure that supports quality health care while balancing the patient’s right to privacy with the legitimate uses of information for administrative, financial, clinical, research, and public health purposes. Health informatics in general refers to the use of information technology and computer science in health care. As health care has come to rely on such technology and science, informatics has become an important domain of practice within the HIM profession.

The patient record—source of health data and information

The patient record is a primary source of health data and information for the health care industry. The record can be paper-based, electronic, or a combination of both, referred to as a hybrid record. Data refer to raw facts, characters, or symbols that, when organized and processed to produce meaning, result in information. Knowledge is derived from information after it is organized, analyzed, and synthesized by the user. A record is a body of known or recorded facts regarding someone or something. When an individual seeks care or treatment from a health care provider, a record of that care or treatment is generated. The data collected from and on the patient are stored in the patient record. The record may be called a patient record, medical record, health record, clinical record, resident record, client record, and so forth, depending on the nature and philosophy of the health care setting in which the record was generated. In addition, the record may be labeled as an EHR or electronic medical record (EMR) if health information technology is used to generate the record. In any case, the patient record is created as a direct result of the health care delivered in that setting. It is the legal documentation of care provided to an individual by the medical or health care professionals who practice in the setting. The data, information, or record may have the term clinical preceding it to denote that the data, information, or record relates specifically to the care and treatment of a patient.

Health information in general includes a wide range of data that is used for multiple purposes. The data spans birth to death and health to wellness. Data that commonly comprises health information is found in Box 2-1. The data and information documented in the record and the record in total are used for the following purposes:

• Documenting health care services provided to an individual to support continuing communication and decision making among health care providers

• Establishing a record of health care services provided to an individual that can be used as evidence in legal proceedings

• Assessing the effectiveness and efficiency of the health care services provided

• Documenting health care services provided to support reimbursement claims that are submitted to payers

• Supplying data and information that supports strategic planning, administrative decision making, public health surveillance, research activities and public policy development related to health care, such as regulations, legislation, and accreditation standards

Box 2-1

TYPES OF DATA INCLUDED IN HEALTH INFORMATION

Clinical data—captured during the process of diagnosis and treatment, supports direct patient care and is used for health care reimbursement, planning, and research purposes

Epidemiological databases—aggregate data about a population, reveals disease trends

Demographic data—used to provide unique identification of individual, patient, health care provider

Financial data—derived from care process, used individually for patient billing, reimbursement, and in aggregate for understanding clinical cost of health care, rules for reimbursement and organizations of financial well-being

Research data—collected as part of care or gathered for specific research purposes or clinical trials

Reference data—refers to literature, research outcomes, protocol, formulary, care plan, clinical alert or reminder, and so on that enhance clinical knowledge or operational decision making

Coded data—data translated into a code using standard nomenclature or classification system that may be aggregated, analyzed, and compared for decision-making purposes

Source: Health information management: Professional definitions from the AHIMA 1999 and 2000 Committees on Professional Development, 2001.

The use of data contained in the patient record has increased with the growing complexity of health care decision making and the increasing complexity of the health care delivery system. Whether patients receive treatment in a hospital, long-term care facility, ambulatory clinic, or physician office, patients are likely to encounter a variety of health care providers working collaboratively to provide the most effective treatment or care for these patients. This situation creates a heightened reliance by care providers on the patient record as a means of communication and as a source of data for decision making.

Documentation within the patient record is the basis for health care billing and reimbursement. Third-party payers such as insurance companies and the federal government through programs such as Medicare and Medicaid use the data documented in the record as proof of the care delivered to the patient. Without appropriate documentation to support the care given, the health care setting or provider will not be reimbursed for services rendered.

The data and information in the patient record are used to substantiate whether the patient received quality care or treatment in the most effective and efficient way possible. Because the cost of health care represents a large portion of the United States’ gross national product, efforts to control spiraling health care costs while providing quality health care place extra importance on the patient record.

Not only are the data and information within the patient record used to substantiate the care given for reimbursement and quality proposes, the record is also a legal document that confirms whether treatment was delivered in a manner appropriate for the given health problem. The record is used to show proof in a court of law of what transpired during the course of a patient’s illness and treatment. As a legal document, the patient record is defined as a record that is “generated at or for a healthcare organization as its business record and is the record that would be released upon request.”1 It is the legal health record (LHR) of the organization.

The patient record is a valuable source of data for research such as comparative effectiveness research, program evaluation, education, and public health studies. Data from the record that are stored in government and private databases are often termed secondary patient data and are used in the aggregate for these purposes. Published data on acquired immunodeficiency syndrome, sexually transmitted diseases, diseases caused by certain infections, and outbreaks of illness such as severe acute respiratory syndrome or the H1NI flu rely on careful documentation in the patient record or source document. Hospital mortality rates are published, as are performance reports on health care organizations. More and more health plans provide performance information to consumers, often referred to as “report cards,” to help the consumers evaluate and select the health plan that is best suited to them.² Data and subsequent information generated from patient care is even more important as efforts focus on identifying the most effective way to deliver quality care for the least amount of expense.

Evolution of the patient record

The importance that patient records play in today’s health care environment is clear. However, how did patient records evolve as a primary source of health care data and information, and what forces influenced this evolution? In addition, what are the milestones in the history of this evolution that have brought us to today’s need for EHR systems and a national health information infrastructure?

Early history

The value of recording patient information has been recognized since prehistoric times. The methods used to record early attempts to treat disease were primitive and differ markedly from the electronic information systems now in use. Prehistoric cave paintings are thought to be the earliest accounts of treating the sick. The paintings depict skull trephination and amputation of fingers and other parts of the extremities. As civilizations developed, stone carvings were made in addition to drawings, and eventually pen and paper became the mode for recording words and thoughts.3

Methods for maintaining patient records were slow to develop, and the earliest institutions used some abbreviated form. Many hospitals appear to have used a ledger to record at least minimum information about a patient—for example, name, address, date of birth, and major health problem. The use of ledgers for record keeping was popular in other businesses as well. They were used by banks, hotels, and other commercial enterprises. Many pioneer record keepers, such as Thomas Jefferson, George Washington, and Benjamin Franklin, used ledger-style recordings, so it is not surprising that health care initially adopted a similar system of documentation.

Early U.S. hospitals such as the New York Hospital, established in 1771, did not begin recording patient clinical information until approximately 1790. Pennsylvania Hospital, established in Philadelphia in 1792 under the leadership of Benjamin Franklin, included entries of the patient’s name, address, and ailment in bound ledger books, many of which were made in Franklin’s handwriting. Charity Hospital in New Orleans similarly entered its first medical records in large ledgers. Because many of its earliest patients were seamen, the terminology used in the records often reflects a nautical influence. Massachusetts General Hospital, established in 1821, maintained patient records from its beginning. These records were sufficiently comprehensive to enable the cataloging of diseases and operations.⁴ One Virginia hospital, established in 1911, maintained its early clinical records in leather-bound volumes that contained between 50 and 100 patient records per volume.

The ledger style of recording patient care was most popular in these early hospitals. As the record-keeping process became more detailed and interest in learning from treatment experience increased, the minimal ledger entry was no longer sufficient. Early record keepers in hospitals looked beyond ledgers to find ways of making patient records more accessible and useful by moving from ledgers to individual patient records. These records were organized into systems that allowed easier retrieval of a patient’s record and the data within the document.

In the early hospitals, only a small circle of health care providers had access to the patient records. The records were brief and contained carefully handwritten entries. In time the information recorded in the patient record was organized into various types of reports such as patient history and physical examination, operative report, progress report, nursing notes, laboratory results, and other ancillary service reports. To help in the learning process of health care providers, some hospitals filed the records of similar diseases or treatments together. Others set up disease and treatment indexes, which enabled them to associate particular patient records with a specific index. When the typewriter was invented in 1874, early hospitals adopted this new form of “information technology” to process their health care data. They began typing the lengthy handwritten documents within the patient record such as operative reports and history and physical examinations. Over time, patient records came to contain scores of documents in a wide variety of formats and media accessed by a wide variety of legitimate users for multiple reasons. For the most part, the patient record has remained paper based; however, the paper form of the record no longer meets the demands placed on it. The paper record can be in only one place at one time, and the data, once entered into the paper record, cannot be manipulated to show trends or relationships among data as may be uniquely required by an individual user of the record. Many forces have influenced the importance of patient records and the data therein, as well as the need to move the paper-based record to an electronic format.

Influential forces

Accreditation

By the turn of the 20th century, hospitals were viewed as boardinghouses for the poor and sick, and issues related to the shortcomings of medical education and the quality of documentation in patient records surfaced. To address these issues, voluntary organizations and state and federal governments began efforts to standardize and regulate the delivery of health care. The American Medical Association (AMA) and American Hospital Association (AHA) were already 50 years old by the turn of the century. However, the organization that was most aware of the need for quality patient records was the American College of Surgeons (ACS). The ACS brought to the forefront the realization that, to assess the quality of physician education and the resulting treatment provided to patients, those performing the assessment needed data, and the primary source of these data was the patient record.

To elevate the quality of surgery being performed in hospitals, the ACS established minimum standards that included specifications for the content of the patient’s record and required that certain activities be documented within a predefined time frame. In 1918, the ACS began to survey hospitals to see whether the standards were being met and found that “only 89 of the 692 hospitals of 100 or more beds surveyed met the minimum standards.”5 The ACS provided leadership and funding for the accreditation activity and also helped form the professional organization now known as AHIMA, which is discussed later in this chapter.

The other voluntary organizations of the AMA, AHA, American College of Physicians, and the Canadian Hospital Association joined the ACS to support the early accreditation body. The Canadian Hospital Association eventually withdrew from the body and formed its own accreditation program in Canada. In 1952, the remaining voluntary member organizations formed the Joint Commission on the Accreditation of Hospitals (JCAH to carry on with the hospital accreditation program. Over the years, the JCAH expanded its accreditation activity to incorporate all types of health care organizations, all of which must maintain patient records (sometimes called resident, client, or medical records). It changed its name to the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) to reflect the expansion of its accreditation activities and in 2007, renamed itself again to The Joint Commission. Throughout the years, Joint Commission has set expectations for quality patient care with the patient record as the primary source of data to substantiate this care. Standards related to the content of patient records and the processes for storing, retrieving, and protecting patient data and records have been identified and make up a chapter within the accreditation manuals devoted specifically to information management.⁶

Licensing of health care facilities

Running parallel to the accreditation programs offered by the early voluntary organizations and later Joint Commission, states began programs to license facilities. Although many of the state licensing codes focused heavily on the physical facility to ensure safe surroundings, they also included sections on the basic requirements for a patient record and patient record system. State licensing boards, or in some cases registration boards, required that health care facilities accredited by Joint Commission must also meet the state licensing requirements to be authorized to provide health care services. As standards and regulations evolved, health care facilities were required to adhere to whichever standard or regulation was more stringent. In general, the voluntary Joint Commission accreditation review involves standards that are more stringent than state-mandated minimum requirements. However, at times the state licensing requirements are more defined than Joint Commission standards. For example, states may require a specific retention period for patient records, whereas the Joint Commission standard for record retention may simply require that the organization have a retention policy for patient records.

Paying for health care

In time, as the U.S. population grew and more hospitals were built to meet the need for health care services, various methods for funding the services emerged. Private health insurance appeared in the first half of the century, and federal programs for insuring selected segments of the population appeared in 1965. Both these third-party payer sources have contributed to the demand for health care data, as found in the patient record. Also, these third-party payers have heavily influenced methods for documenting in the patient record and fast and accurate retrieval of this documentation for reimbursement purposes.

Employers began to add benefits to workers’ compensation packages in the form of health insurance as early as 1929. Major expansion of health insurance benefits and programs occurred in the 1950s and 1960s, followed by another major thrust for funding health care through managed-care plans. Over the years, insurance companies and managed-care organizations have increased the quantity and specificity of the documentation required from the patient record to support each claim for health care services that is submitted for payment. Likewise, state and federal governments have done the same through Medicare and Medicaid programs.7

In 1965, Congress added provisions to the Social Security Act that created the Medicare and Medicaid programs (see Chapter 1). This event resulted in the addition of regulations at the federal and state levels for patient records. Many of the basic Joint Commission standards were incorporated in the regulations of these programs. Now, instead of voluntary standards, the regulations were part of the federal Conditions of Participation.⁸ The Conditions of Participation spelled out for health care providers the regulations that they must follow to be reimbursed for the health care given to patients who use Medicare and Medicaid as their payment source. One regulation required that each admission of a patient to the hospital was subject to review and potential denial of payment if the admission was judged, after the fact, to be unnecessary. The federal government set up a monitoring system for Medicare patients that reviewed the appropriate use of hospital resources and the quality of patient care. Much of the review focused on the patient record as the primary source of information. The phrase “if it isn’t documented, it wasn’t done” became a mantra during this time in an attempt to communicate the increasing importance of proper documentation in the patient record under the Medicare review program.

The Medicare and Medicaid programs were essentially a fee-for-service style of reimbursement. If a service was provided that the programs had agreed to cover, a payment would be received at a discounted rate. The system encouraged more services to generate more payment. Spiraling health care costs over the next 15 years led Congress to search for ways to control these costs. One solution was to move from a fee-for-service style of reimbursement to a prospective payment method. The prospective payment method compared with the fee-for-service method of reimbursement is based on payment rates that are established in advance and that reflect an average of what a service should cost. Thus, between 1980 and 2002, Congress moved to a prospective payment system method of reimbursing health care for seven health care services: ambulatory surgery centers (1980), inpatient acute care hospitals (1983), skilled nursing facilities (1998), home health agencies (2000), outpatient hospital services (2001), inpatient rehabilitation facilities (2002), and long-term care hospitals (2002).⁷ The patient record became, and still is, the primary data source used to justify each claim submitted for the respective prospective payment systems. Thus, the need to improve methods of collecting, processing, communicating, and managing data from patient records is paramount to meeting the demands for increased information and quality patient care.

Technology

Throughout the 20th and into the 21st centuries, innovation and adoption of technology has increasingly been used as a tool to support diagnostic, therapeutic, monitoring, and educational activities associated with direct patient care. The results produced through the application of technology in patient care were reported in the primary patient record; however, the actual scan or image produced by the application was stored in another location. As information technology matured over the years and the demand for more information increased, new approaches to the patient record emerged. Data may become part of the record without forcing the data to appear on paper; that is, data from images, voice, and sound can be an integral part of a primary patient record that is electronic in format.

In the 1980s, a breakthrough in the processing of data and information occurred when personal computers and data communication technologies entered the marketplace and became more affordable. These technologies enabled hospitals and other health care providers to increase their reliance on health information technology (HIT) as a means of staying competitive in an increasingly information-intensive industry. The challenge was to move the paper-based patient record to an EHR format. In such a format, the patient record can be composed of electronic databases (or repositories of data) that contain the health care information generated on the patient while treated in a given health care facility. The data within the database can be accessed and arranged in multiple ways such as a longitudinal record from birth to death of a patient, an in-depth view of a single, current health problem of how one individual is being managed, or the records (data) of many individuals merged to provide information on the outcome of particular treatments across a population of patients.

In 1989, the Institute of Medicine addressed this challenge by undertaking a study to improve patient records through the use of information technology. The Institute of Medicine convened a committee of industry experts who reported in 1991 that health care professionals and organizations should be encouraged to adopt computer-based patient records as a standard for all records related to patient care. They defined the patient record of the future as one that “will reside in a system specifically designed to support users by providing accessibility to complete and accurate data, alerts, reminders, clinical support systems, links to medical knowledge and other aids.”9 If the patient record was computerized, it could allow multiple users to access data at the same time. Researchers could also access the data in aggregate form if they were looking for data on a certain type of treatment but did not need to identify an individual patient. One recommendation of the study was that the “public and private sectors join in establishing a Computer-based Patient Record Institute to promote and facilitate development, implementation, and dissemination of the CPR.”⁹ The institute was formed and functioned throughout the 1990s in support of computerizing patient records.

During the 1990s, there was continuous growth of information and communication technologies, including the Internet, Web-based applications, wireless communication, and telephony in regard to patient care and treatment. As a result, the concept of electronic health or “e-health” emerged. E-health refers to the following:

health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, the term characterizes not only a technical development, but also a state-of-mind, a way of thinking, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology.10

By the end of the 1990s, we saw a growing reliance on e-health in all phases and aspects of health care and life. The need for public health preparedness and disease surveillance systems to address terrorism and other public health concerns on a national and global basis emerged. There was a growing emphasis on bringing the consumer of health care into the picture as a way to improve care and control costs. The concept of consumers taking charge of their health care by keeping their own personal health record (PHR) and linking the caregiver and consumer through HIT was seen as important to the future of health care delivery.

Up to this time, providers were adopting applications to capture, process, and retrieve data electronically from all or parts of the patient record. As a result, patient records in some instances became a combination of paper, digitized information, and imaged documents. We begin to see patient records and patient record systems in some organizations change from strictly paper-based documents to a hybrid record. A hybrid record refers to a record that includes both paper and electronic documents and uses both manual and electronic processes to store and retrieve the documents.¹¹

A complete EHR is not yet the norm of practice for a variety of reasons, including a lack of data standards and interoperability, investment costs, acceptance of HIT by staff, and availability of staff to implement EHR systems. However, to address these barriers, the federal government and a number of public-private organizations have been working on ways to speed up the adoption of EHRs as a means to improve the quality, safety, efficiency, and cost of health care.¹²

In January 2004, President George W. Bush highlighted the importance of information technology in health care in his State of the Union Address. He stated, “By computerizing health records, we can avoid dangerous medical mistakes, reduce costs, and improve care.”¹³ The following April, President Bush issued an executive order that called for widespread adoption of interoperable EHRs within 10 years and established the position of the National Coordinator for Health Information Technology.¹⁴ Subsequently, in June 2004, the President’s Information Technology Advisory Committee (PITAC) published a report that suggested to reduce health care costs, control medical and medication errors, reduce needless duplication of diagnostic tests, and monitor public health and bioterrorism concerns the government should enable ways to develop a 21st-century EHR system.¹²

The PITAC proposed a framework for a health care information infrastructure that would be composed of four elements: EHRs for all Americans; computer-assisted clinical decision support; computerized provider order entry and secure, private, interoperable, electronic health information exchange.¹² The PITAC report was followed by a progress report from the Office of the National Coordinator for Health Information Technology (ONC) which laid out strategic action to achieve a vision of consumer-centric and information-rich health care. To achieve this vision, the ONC supported numerous efforts to implement EHRs and regional health information organizations, now identified as health information exchanges (HIEs).1⁴ Since these documents were published, the federal government has taken an action-oriented role in facilitating the adoption of HIT and EHRs systems, which will be discussed in more detail later in the book. In addition, a number of federal grants have been funded and legislation introduced to support the ONC efforts.¹⁵ In 2009, President Barack Obama reconfirmed the federal government’s commitment to implement EHRs and HIEs through his support of the ARRA and the Health Information Technology for Economic and Clinical Health (HITECH) Act provisions of the Recovery Act. The HITECH Act provides direction through the ONC and funding opportunities to harness the full use of HIT to support EHR implementation and HIEs.¹⁶

Today, when asked what constitutes a patient record, one has to look beyond a hard copy paper-based document to a broader view of an EHR that fulfills several purposes as well as serving as the core for HIEs. As health care has become more complex, the patient record has evolved to address these complexities. It has emerged from prehistoric cave drawings to paper records to hybrid records and now to electronic records. In an electronic format, attention has been paid to health care data and information and how it translates to patient records that are generated and reside within a health care delivery organization or records that become part of HIE entities. In an electronic format, the patient record also enables the collection and use of secondary data for health care policy analysis and other major investigative purposes. Changes in electronically stored health care information and the patient record have given rise to the need for a HIM professional who functions as a steward of information management and a key collaborator in transitioning the health care industry from paper-based patient records to EHR systems.

Evolution of the health information management profession

Early history

The early efforts by the medical profession to upgrade the education of physicians and to evaluate the quality of care provided to patients have a direct link to the beginning of the HIM profession in the United States. The HIM profession evolved from the need for accurate and complete records regarding the care and treatment of patients as one means to improve and standardize health care. The ACS’s standardization program was the catalyst for organizing and educating a group of people who could assist hospitals in meeting the informational needs of accrediting bodies and medical educators. Hospital medical record departments were forming, and a knowledgeable workforce was needed to implement and manage methods of collecting, storing, and retrieving patient data and records. In 1928, Dr. Malcolm MacEachern, director of hospital activities at the ACS and an important leader in the hospital standardization movement, recognized that more was needed to bring about change in the quality of patient records.5 He invited medical record workers from the United States and Canada to attend a meeting of the Clinical Congress of the ACS. The meeting program and exhibits were devoted to medical record documentation and standard-setting efforts of the ACS. The meeting resulted in the medical record workers organizing to form the Association of Record Librarians of North America (ARLNA). Grace Whiting Myers, Librarian Emeritus of Massachusetts General Hospital, was elected the first president of the association.⁵ Establishment of the ARLNA was the first step toward professionalization of the discipline of HIM.

The first annual meeting of the ARLNA was held in Chicago the following year. Fifty-three charter members adopted the association’s constitution and bylaws and identified ways to communicate and educate a medical record workforce. At the close of the meeting, the members decided to communicate through the publication of a quarterly journal, Bulletin of the Association of Record Librarians of North America. In addition, a committee was formed to develop a course of study for medical record librarians. This course of study laid the groundwork for the profession’s development of education programs at the associate, baccalaureate, and master’s degree levels.¹⁷ Efforts of this committee are discussed in more detail in the section, “Formation of Education Programs.”

Along with the development of standardized educational curriculum, the ARLNA determined that it needed to set standards for its members and formed a Board of Registration in 1933. The board developed rules and regulations for registering members as a registered record librarian (RRL). The rules and regulations set by the board in essence “certified” that the individual met certain criteria or standards that entitled him or her to bear the credential RRL.¹⁸ Additional certifications have been added over the years and are discussed later in the chapter under the section “Professional Certification.”

By 1939, the young association had revised its bylaws to allow for state associations to become affiliates of the national association. The Canadian members of the association eventually broke away and formed their own association in 1944.¹⁹ The ARLNA subsequently changed its name to the American Association of Medical Record Librarians (AAMRL). It opened its first executive office in Chicago with the help of the AHA and moved to its own headquarters in 1946.²⁰ Throughout the next 30 years, association activities focused on building a professional body of knowledge that supported academic program growth, program accreditation, professional certification, and continuing education. In 1970 the association changed its name to the American Medical Record Association (AMRA) and changed its name again in 1991 to the AHIMA.²⁰