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Health Care EDI Legislation: A Historical Perspective

The United States government and many national organizations have worked steadily for more than two decades toward the goals of administrative simplification and electronic data interchange standards for the health care industry. The Department of Health, Education, and Welfare (DHEW), which became the Department of Health and Human Services (DHHS) in 1980, reported that "there is great difficulty in comparing various programs because units of measurement are different among and within programs, both at the national level and at the state and local levels. Such terms as enrollee, registrant, encounter, service, person, and patient may be used interchangeably." (Health Statistics Today and Tomorrow, September 1972) The National Committee for Vital and Health Statistics (NCVHS) was created in 1974 to serve as the primary advisor to the Assistant Secretary for Health (ASH) of the DHEW. The DHEW also created in 1974 a Health Data Policy Committee to advise the AHS on uniform minimum basic data sets. The National Academy of Sciences was created in the 1970s. The Academy's reports, titled The Computer-Based Patient Record: An Essential Technology for Health Care, 1991, and Health Data in the Information Age: Use, Disclosure, and Privacy (1994), brought the issues of health data standardization to the public forefront.

In 1975, The National Health Planning and Resources Development Act (P.L. 93-641) was passed to amend the Public Health Service Act for the purpose of ensuring the development of a national health policy. This legislation required the Secretary of DHEW to establish a national health planning information center to support the health planning and resources development programs of the systems agencies, including the establishment of uniform cost and statistical reporting systems. The act created the demand for minimum data sets in the development of regional and statewide health plans.

Coinciding with the genesis of health data standardization legislation was the enactment of the first data privacy legislation. Secretary of DHEW Elliot Richardson appointed an Advisory Committee on Automated Personal Data Systems, which published the Code of Fair Information Practices and Principles in 1973. These principles of openness, individual access, individual participation, collection limitation, use limitation, disclosure limitation, information management, and accountability were incorporated in PL 93-579, the Privacy Act of 1974. Although the Privacy Act concerned only databases that were held by the federal government, it formed the basis for many subsequent federal and state privacy statutes. The Privacy Act was amended in 1988 by the Computer Matching and Privacy Protection Act, which specified conditions that must be met before computer matching could be permitted. The Privacy Act also prompted the creation of the Privacy Protection Study Commission, the purpose of which was to "make a study of the data banks, automatic data processing programs, and information systems of governmental, regional, and private organizations in order to determine the standards and procedures in force for the protection of personal information" (Personal Privacy in an Information Society, The Report of the Privacy Protection Study Commission, July 1977).

Another important federal law was the Paperwork Reduction Act (44 USC 35), enacted by Congress in 1980 to minimize the federal paperwork burden, coordinate federal information policies, and ensure that the collection, maintenance, use, and dissemination of information by the federal government is consistent with applicable laws relating to confidentiality.

The legislation of the 1970s and 1980s set the stage for a flurry of activity in health data standardization and privacy protection in the early 1990s. In November 1991, Secretary of DHHS Dr. Louis Sullivan convened a forum of national leaders to discuss the challenges of reducing administrative costs in the U.S. health care system. At this forum, the following three industry groups were created:

  • The Workgroup for Electronic Data Interchange (WEDI)

  • The Taskforce on Patient Information

  • The Workgroup on Administrative Costs and Benefits

Other groups focused on health information standards, and an exchange began to form at this time. Under the Bush Administration in 1992, the DHHS created the Computerized Patient Records Council to coordinate departmental activities related to computerized patient records. This group called for the "development of a nationwide electronic health care information network by 1996" (Initiatives Toward the Electronic Health Care System of the Future USDHHS White Paper, Washington, D.C., 1992). In March 1992, the American National Standards Institute (ANSI) organized and chartered the Healthcare Informatics Standards Planning Panel (HISPP) to "coordinate the work of various standards groups toward achieving a unified set of non-redundant, non-conflicting standards" (Toward a National Health Information Infrastructure, Report on the Computerization of Patient Records to the Secretary of DHHS, April 1993). Industry trade groups, such as the Computer-based Patient Record Institute (CPRI), which was formed in 1991, and the National Association of Health Data Organizations (NAHDO), which was formed in 1986, educated their members about current practices and laws related to health care information exchange.

The Workgroup for Electronic Data Interchange (WEDI) was a major catalyst for successive administrative simplification legislation. WEDI released two reports, both of which were widely disseminated throughout the industry (Workgroup for Electronic Data Interchange, Report to the Secretary of U.S. Department of Health and Human Services, WEDI; 1992/1993). In the 1992 report, WEDI recommended that the health care industry adopt uniform standards by 1993 for enrollment, eligibility, claims submission, and payment and remittance information. Recommendations were also made pertaining to information privacy and health care identifiers. The 1993 report specified that in addition to the standards described in the earlier report, standards for the following transactions should also be adopted: patient information, claim status, health care service review, coordination of benefits, and HMO reporting. Where there were ANSI standards available or under development, recommendations were made to adopt those standards.

The Clinton Administration placed a high priority on the topic of administrative simplification of health care information, and the Administration began to plan for health care reform as soon as President Bill Clinton took office in November 1992. The Administration's early health care reform plan included provisions to develop standardized forms to simplify insurance claims and reduce administrative expenses, distribute electronic identification cards to all Americans, and develop incentives for the shared use of new technology (MBR Health Care Task Force, President Elect Clinton's Health Care Reform Plan, November 1992).

President Clinton's 1993 Health Security Plan, which Congress did not approve, incorporated many of the recommendations made by WEDI in the areas of simplified enrollment, insurance reimbursement, the coordination of benefits, and insurance transactions, as well as coding, content, and data elements. The Plan called for the establishment of a National Health Board. In consultation with state and private entities and other relevant organizations, this board would develop and implement uniform national standards for administrative, clinical, and financial transactions. The process would include public hearings and formal notice and comment procedures (The President's Health Security Plan, 1993, p. 124-125). This mission may sound similar to many of HIPAA's objectives, but there were significant differences. The Plan called for a national network that would enable health plans to transmit encounter data on a regular basis in the form of a minimum data set to meet a variety of data needs (ibid., p. 129). The other marked difference would have been the dissemination of health security cards to every American "to assure access to needed health services throughout the United States" (ibid., p. 124). If the Health Security Plan was adopted, a two-year timeline was provided to complete the implementation.

Representative Richard Gephardt introduced on November 20, 1993, the Health Security Act, or HR 3600. It was reviewed until no further action was taken after August 1994. Subtitle B contained Administrative Simplification legislation, calling for standards for data elements and information transactions, unique identifiers, and code sets. This bill also called for the development of standards for the operation of a health information network (Gaus, Clifton R., ScD, Scanlon, James, and Ross, Majorie H. A New Information Framework for Health Care Reform Presented at the Annual Meeting of the National Association of Health Data Organizations, Washington, D.C., December 9, 1993).

Although this legislation was not approved, Congress and industry advocates continued to move forward with new administrative simplification legislation. The Healthcare Financial Management Association (HFMA) proposed the Healthcare Administrative Simplification and Uniformity Act of 1993, which called for "the establishment of national, uniform electronic processes for various functions associated with many health care administrative procedures and the establishment of an independent commission to create and monitor these processes and any others that may need future development" (Weinheimer, Christopher F., Healthcare Financial Management, 1993).

In 1994, President Clinton and Vice President Gore set a goal to connect all of the hospitals and clinics to the National Information Infrastructure (NII) by the end of the century (Putting the Information Infrastructure to Work, Report of the Task Force Committee on Applications and Technology, NIST, May 1994, p. 3). A National Information Infrastructure Task Force was created to study how the NII could be built and implemented. Although its report was a valuable contribution, it did not result in any further legislation.

The House of Representatives continued to set forth proposals to win support for the President's administrative simplification goals. On June 7, 1995, Rep. David Hobson (R-Ohio) succeeded in drafting an administrative simplification bill that was approved by Congress on March 28, 1996. The Health Information Modernization and Security Act (HR 1766) provided for the establishment of a modernized and simplified health information network for Medicare and Medicaid as well as for other purposes. This legislation called for uniform code sets and standards for claims, attachments, coordination of benefits, identifiers, electronic signatures, and security/privacy. After HR 1766 was passed, it paved the way for the U.S. government to define the process, strategy, and implementation considerations for achieving health care information standardization - as addressed in the Health Insurance Portability and Accountability Act of 1996.