October 3, 2000

The Honorable Donna E. Shalala
Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Dear Secretary Shalala:

We are writing to advise you on the International Classification of Impairments, Disabilities, and Handicaps (ICIDH), which the World Health Organization (WHO) currently is revising. WHO proposes to submit the revised classification to the WHO Executive Board in January 2001 and the World Health Assembly for approval in May 2001, after which it will have a prominent role in WHO’s health information activities. The new version will ultimately have a new name, but it will be referred to here as ICIDH-2.

The NCVHS has been following the revision process because ICIDH-2 provides a framework that may be useful in collecting functional status information in the U.S. health care system. Functional status is one of the elements recommended by the NCVHS as a core health data element. The classification also has implications for national and international health statistics. Our Subcommittee on Populations has held several hearings on ICIDH-2 at which representatives of health professions and health care provider organizations have testified on the utility and feasibility of using the ICIDH in connection with enrollment forms, encounter forms, and other health administrative records included in the HIPAA transaction standards. Incorporating a well-designed and tested functional status measure in administrative records could have important applications in clinical management, quality assessment, risk adjustment, and population health monitoring. The Subcommittee has completed its fact-gathering and is now preparing a report and formulating recommendations, which are expected to be completed soon.

The current version of ICIDH-2 was released by WHO for testing in July 1999. Since then testing has taken place at many sites around the world, including several in the United States. The results of that testing are just now becoming available. The NCVHS focused its attention on the current version of ICIDH-2 on the assumption that its basic conceptual constructs would not be changed in the final version, although some clarifications and changes in format and details were expected as a result of testing.

We have now learned from the official in charge of the ICIDH revision that WHO has decided to make a significant change in the definition of two of the classification’s key conceptual constructs, Activity and Participation. These constructs are used to classify individuals as to ability to engage in usual activities and to participate fully in society. Consequently, these dimensions may be critical in monitoring requirements of the Americans with Disabilities Act and the Healthy People 2010 objectives. The decision was made on the basis of responses to a hastily developed questionnaire that the U.S. and other countries found very confusing. The decision was not made based on the testing that many countries have undertaken in the last year.

The NCVHS is trying to obtain more information about the rationale and implications of the conceptual changes. Not until we have such information can we evaluate the substance of those changes. Even without such information, however, we feel that making such significant changes so late in the process on the basis of weak evidence tends to undermine the confidence of potential users of the classification. If the classification is perceived to be unstable in its basic structure and insufficiently tested in the field, it would be difficult for us to recommend its further development for use in the United States. At the very least, the rationale for making the changes should be widely disseminated and discussed.

We have been told that the Director General of WHO, Dr. Gro Harlem Brundtland, will soon send a letter to member countries on the ICIDH and related issues. We do not know in detail the substance of that letter, but it will presumably offer member countries an opportunity to comment on the proposed classification. We recommend that the response from the United States emphasize that any further changes to the ICIDH-2 should be based on analyses of the test data already collected by WHO Collaborating Centres and International Task Forces, and that changes to the basic constructs of the classification be made only if the analyses clearly support them.

Further, we recommend that the U.S. response urge that member countries have an opportunity to review changes, through appropriate channels, before the document is submitted to the WHO Executive Board and World Health Assembly for final approval. Finally, we recommend that WHO should establish mechanisms for coordinating and maintaining the new classification, along the lines of the mechanisms already in place for the International Classification of Diseases. Such mechanisms will help to reassure potential users that future changes to the classification will be evidence-based and made in a systematic and open process.



John R. Lumpkin, M.D., M.P.H.

Copies to:

Jeffrey P. Koplan, M.D., M.P.H.
Thomas Novotny, M.D., M.P.H.
John Eisenberg, M.D.
Margaret Hamburg