Background Materials for Hearings of the Workgroup on Computer-based Patient Records, NCVHS
December 8-9, 1998


The Health Insurance Portability and Accountability Act (HIPAA) of 1996 charges the Secretary with adopting standards for specified administrative transactions, data elements for such transactions, and supporting standards to enable health information to be exchanged electronically. The purpose is to improve the "efficiency and effectiveness of the health care system, by encouraging the development of a health information system through the establishment of standards and requirements for the electronic transmission of certain health information ..." [HIPAA, Section 261].

HIPAA also directs the National Committee on Vital and Health Statistics (NCVHS) to assist and advise the Secretary and to "study the issues related to the adoption of uniform data standards for patient medical record information and the electronic exchange of such information" and to "report to the Secretary not later than 4 years after the date of the enactment of the Health Insurance Portability and Accountability Act of 1996 recommendations and legislative proposals for such standards and electronic exchange ...[HIPAA Section 263]." It is this latter mandate that is the subject of this letter.

The Work Group on Computer-based Patient Records of the NCVHS's Subcommittee on Standards and Security has the responsibility for studying the issues and preparing the committee's report by August 2000, four years after the date of enactment (August 21, 1996) and will hold hearings to this end on December 8-9, in Washington, D.C.

Purpose

The purpose of these hearings is to help the committee develop and understand the issues related to patient medical record information--its uniform data standards and its electronic transmission, and the role federal government can play to address these issues. Testimony from these hearings will provide direction to the committee in the preparation of its Congressionally mandated report. The Work Group is considering four focus areas of interest for study and for the hearings in the coming year to prepare the report.

Four Focus Areas:

1. Guidelines and standards for administrative and clinical messages that contain patient medical record information and their formats.

2. Guidelines and standards for patient clinical information (data element definitions, data models, and code sets).

3. Ways to enhance the coordination and maintenance of both administrative and clinically-specific code sets so that they can support the demands of a computer environment that requires continuous availability, greater interoperability, more timely updates, greater clinical specificity, and greater accountability for quality. These are core data-dictionary and meta-data or data-set registry issues.

4. Ways to address the business case issues regarding the implementation of uniform data standards for patient medical record information.

Information for Presenters

The following guidance was offered to help presenters prepare their testimony. Please give (1) your name and title, (2) the name and brief description of the organization you represent, and (3) address the questions below.

In addition, a partial list of clinical data standards was provided to presenters to let them know about the kinds of patient medical record data standards currently in use. This list came from the Inventory of Clinical Data Standards (HISB 79 Parts 1-4) produced by the American National Standards Institute's Healthcare Informatics Standards Board in 1998.

Questions for Presenters

1. How do you interpret the Congressional instruction?

2. What factors or issues are preventing or delaying the development and widespread implementation of uniform standards for patient medical record information and its electronic transmission? Explain.

3. Is the private sector able to address these problems satisfactorily? In your opinion, what is the role of government for assisting the private sector in the guidance, development, coordination, and implementation of standards for patient medical record data and their electronic transmission? How might the government help to improve the standards processes?

4. Which standards related to patient medical record information and its electronic transmission would:

A) Add the most value for improving the quality and efficiency of health care for the nation? Why?

B) Be most important to the business or goals of your organization? Why?

C) What is the business case for more rapid standards development and implementation?

5. Do you agree with our emphasis on the four focus areas listed above? Explain.

Scope of Inquiry

Although we consider the privacy, confidentiality, and security of personal health information to be very important, because NCVHS has held several hearings on in the past two years on these topics, we have not made them the focus of this hearing.

Written Testimony

The Work Group would be pleased also to accept written testimony on the issues addressed by these hearings.