Toward a National Health Information Infrastructure: A Key Strategy for Improving Quality in Long-Term Care


Marcelline R. Harris, RN, Ph.D., Mayo Clinic
Christopher G. Chute, MD, Dr.P.H., Mayo Clinic

Jennie Harvell, M.Ed., U.S. Department of Health and Human Services

Alan White, Ph.D., Abt Associates
Terry Moore, Abt Associates

This report was prepared under contract #282-98-0006 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and Abt Associates. For additional information about the study, you may visit the DALTCP home page at or contact the ASPE Project Officer, Jennie Harvell, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is:

We are grateful to Jack Schnelle, Keela Herr, and Nancy Bergstrom for their assistance in identifying the key clinical data they believed essential to making judgments of quality of care related to their specific area of expertise and helpful discussion and feedback. We also thank Andy Kramer for valuable comments on earlier drafts.


The availability of detailed and clinically relevant data is essential for clinical care decisions and essential for oversight groups making decisions related to the quality of that care. The Institute of Medicine has repeatedly emphasized that cost-effective, high quality health care is linked to the availability of information, and that computerized patient medical record information systems are an essential strategy in improving the quality of care. A National Health Information Infrastructure (NHII) has been identified by numerous advisory panels and experts as essential for improving patient safety and quality, controlling rising health care costs, and responding to health care crises (e.g., bioterrorist attacks). The technology to support the NHII is available. Implementation awaits a coordinated national effort, particularly around health information standards.

The purpose of the NHII is to share information and knowledge when and where needed. An essential building block of the NHII is adoption and use of agreed upon terminology and messaging standards. Terminology standards provide an unambiguous, machine-readable meaning of specific terms. Messaging standards permit the electronic exchange of information in a consistent format. Terminology and messaging standards will allow the inter-operable use and exchange of healthcare information. Much of the discussion about electronic health information standards has arisen within the acute care arena. In long-term care, there has been limited discussion related to electronic health information standards.

There were three objectives of this study. The first objective was to determine, as a pilot activity, whether leading terminology and classification systems provided content coverage to support clinical decision-making and quality of care oversight in nursing homes as recommended by clinical experts and as reflected in the literature. The three domain areas of pressure ulcers, chronic pain, and urinary incontinence provided the focus of this content coverage study. The second objective of this study was to examine the content of the federally required nursing home minimum data set (MDS) to determine whether it provides the information needed to understand quality of care in nursing homes in the three selected domains. Third, the study also examined the extent to which the content of MDS was captured by the three terminology systems described below.

Nursing homes are presently required to complete the nursing home MDS at numerous points during a resident's stay in a nursing facility. MDS data is used for several regulatory purposes including supporting the Medicare and sometimes Medicaid nursing facility payment methods and developing nursing home quality indicators and quality measures.

One formal terminology system and two classification systems were examined in this study: the Systematized Nomenclature of Medicine -- Clinical Terms (SNOMED CT), International Classification of Functioning, Disability, and Health (ICF), and International Classification of Nursing Practice (ICNP). SNOMED CT was developed specifically as a comprehensive, detailed clinical terminology system, and is structured in a way that takes advantage of new computer-based technologies for clinical information systems. SNOMED CT was selected for this study because it is considered to be the most comprehensive terminology system. Given the scope of clinical terms included in SNOMED CT and its acceptance by healthcare providers, the federal government is pursuing an agreement with the developers of this terminology that would make SNOMED CT widely available for use within the U.S. In contrast to SNOMED CT, ICF and ICNP were developed as classification systems, not detailed clinical terminologies. The ICF classifies many terms related to disability, an issue that many nursing home residents and that providers must address. The ICNP emphasizes the classification of terms relevant to nursing practice, a discipline very important to nursing home services.

The terms, data elements, and concepts needed to understand nursing home quality in the three domains were obtained through consultation with nationally recognized experts in each of the domains and a review of the literature.

Regarding the first objective, this report demonstrates that a comprehensive, internationally recognized formal terminology system such as SNOMED CT provides relatively complete coverage of terms suggested by the experts and the literature as needed to understand quality in the domains of pain, incontinence and pressure ulcers. Specifically, the study found the following complete match rates of terms in SNOMED CT and the terms recommended by experts: 77% for pressure ulcers, 92% for chronic pain, and 95% for urinary incontinence.

The ICF and the ICNP did not provide nearly as comprehensive coverage as SNOMED CT. The ICF was found to have the following complete match rates of the terms suggested by experts: 18%, 4%, and 4% for the domains of pressure ulcers, pain, and incontinence, respectively. The ICNP was found to perform equally poorly, with the following complete match rates of the terms suggested by experts: 16%, 3%, and 4% for the domains of pressure ulcers, pain, and incontinence, respectively. The differences between the content coverage provided by SNOMED CT and both ICF and ICNP illustrate why comprehensive, detailed clinical terminologies are essential components of the NHII. If clinically relevant data are captured at the point of care and encoded using a reference terminology system, algorithms can be written that enable the derivation of more use-specific classifications or reports (e.g., ICF, ICNP, or MDS). Perhaps more importantly, clinical data collected at the point of care can also be made available for "real time" applications such as automated alerts and clinical decision support systems, an important strategy for improving the quality of care. Clinical data, entered once at the point of care and encoded using a reference terminology system, are then said to be "re-usable" for multiple applications.

With respect to the second objective, the report indicates that the design and content of the MDS reflect the technology available at the time the MDS was originally developed. The report describes the MDS as an enumerated coding scheme that was designed to meet predefined needs for clinical data and information, and, as such, is not based on any standardized terminology system (i.e., a coding scheme that would permit the unambiguous exchange of information across the healthcare continuum).

The study found the nursing home MDS provided very limited coverage of terms suggested by experts as needed to understand nursing home quality in the domains of pain and incontinence. Overall, in the domains of incontinence and pain, fewer than 10% of the terms suggested by the clinical experts and literature as needed to understand nursing home quality had a complete match in the MDS. The MDS performed better with respect to pressure ulcers. The MDS provides an exact match for 70% of the pressure ulcer terms identified by the clinical experts and the literature needed to understand nursing home quality. Overall, this report concludes that the MDS does not capture information the experts said would be needed to measure nursing home quality in the three domains.

Finally regarding the third objective, most of the information collected using the MDS is not captured by SNOMED CT, ICF, or ICNP. Specifically, with respect to the extent to which SNOMED CT included any of the terms in the MDS, SNOMED CT was found to provide a complete match for 46% of the MDS terms. The ICF and ICNP were found to provide almost no coverage of the terms included on the MDS. Overall, a complete match rate of terms in the MDS and those in the ICF and ICNP was found 2% and 12% of the time, respectively.

Today, health information systems are expected to meet a variety of changing demands for data and information to support many purposes (e.g., automated alerts, decision support, quality monitoring, payment policy, and outcomes research). Standardized terminology systems are essential to permit the use and exchange of clinical data across applications and systems. Given point of care documentation, technology is now available to build electronic health information systems that will efficiently meet a variety of needs including: providing immediate feedback to care providers by, for example, issuing alerts related to relevant best practice guidelines, generating data needed for internal and external quality monitoring, exchanging critical patient information in a timely manner across the health care continuum, and reducing provider burden associated with current documentation requirements.

One of the most significant challenges to implementing electronic health information systems is the lack of standards for electronic patient medical record information, especially standards around the terminology that expresses clinical documentation. Achieving the promise of the NHII requires a coordinated national effort to adopt standardized terminologies, permitting the extension of inter-operable electronic health information systems into long-term care. Efforts to develop payment and quality monitoring methods that are derived from clinical documentation systems in long-term care must be consistent with the underpinnings of the NHII. Failure to do so could only continue and exacerbate provider data collection burden and limit the scope, and, therefore, the utility of the NHII as a key strategy for improving the quality of care.