NCVHS Accomplishments in 2002

As advisory committee to the Secretary of the Department of Health and Human Services, the NCVHS’ accomplishments in 2002 include:

Published the final report of the NCVHS Workgroup on the National Health Information Infrastructure (NHII), Information for Health: A Strategy for Building the National Health Information Infrastructure (November 2001). The report outlines a process for mobilizing the institutional and technological factors needed to support health decision- making through a comprehensive national health information infrastructure and builds on the Workgroup’s Interim Report of June, 2000.
Through the Chair, presented the NHII report to the Data Council (Jan 2002) and urged HHS to exercise leadership in building the NHII in terms of priority setting and developing specific proposals for HHS oversight and coordination. Ongoing development of issues pertaining to implementation of NHII recommendations were highlighted in a hearing held in Chicago (July 25th).
Submitted a letter (Sept 27, 2002) strongly urging that the Department respond to the public’s lack of information about privacy rule implementation issues with significantly increased resources. The letter advocates the need for immediate and intense effort by the Department to promote information about privacy implementation, including a massive public education program – in various formats and media-- and technical assistance to inform the public and providers about the process, in preparation for the April 2003 deadline for implementation.
Finalizing the Report: Health Statistics for the 21st Century, the culmination of a 3-year process established to help shape the Nation's health statistics system for the 21st century. The report outlines themes that have emerged from national consultations involving health statistics users, public health providers, advocacy groups and health care providers at local, state, and Federal levels. Ten principles have emerged as essential qualities to developing the health statistics Vision. The process is a partnership of the National Center for Health Statistics, the National Committee on Vital and Health Statistics, and the HHS Data Council, with the recommendations developed by the NCVHS.
Submitted the fifth annual report to Congress on Implementation of the Administrative Simplification Provisions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The 5th NCVHS Report to Congress describes the major milestones achieved on the implementation of HIPAA by outlining the process as well as implementation of the standards required by HIPAA. This report also reflects the modifications to the Privacy Rule. These annual reports by the Committee are required by the HIPAA legislation.
Received several briefings (June & Sept 2002) from Centers for Medicare and Medicaid Services on the Consolidated Healthcare Informatics project (CHI), and agreed to serve in an advisory capacity to the project.
Heard a panel presentation on “National Preparedness and a National Health Information Infrastructure” (February 2002). Based on the information provided by the panel and the discussion that followed, the Committee prepared a letter to the Secretary encouraging serious and immediate attention to the importance of consistent data standards to enhance national preparedness and the continued development of NEDSS in this effort (February 27). The letter noted that the implementation of NEDSS-based systems in each state must be not only standards-based but interoperable and expressed concern that incompatible implementations may occur without clear leadership and guidance by the CDC and the Office of Public Health Preparedness.
In direct response to the HIPAA directive to “study the issues related to the adoption of uniform data standards for patient medical records [PMRI] and the electronic exchange of such information”, the Committee followed up its August 2000 report studying the issues with a letter of recommendations for the first set of PMRI standards, which are limited to PMRI message format standards (February 27, 2002). Selecting the standards entailed getting input through hearings from the Standards Development Organizations, healthcare information system vendors, health care organizations, professional societies, and other users of these standards.
Through the Subcommittee on Standards and Security, submitted a letter to the Secretary (June 27th) supporting modifications to the Electronic Transaction Final Rule and recommended that a replacement standard code set for reporting drugs and biologics in nonretail pharmacy standard transactions not be named. The intent is to give industry time to fully evaluate its current practices and identify preferred alternatives, as well as provide time for a new drug coding system to become available for testing and evaluation.
Through the Subcommittee on Privacy and Confidentiality, NCVHS developed recommendations to clarify aspects of the privacy rule pertaining to research (November 21, 2001). The Committee is committed to maximizing access to protected health information that is essential for research, as long as the information is used with respect for the privacy of the subjects. An earlier letter (Oct 1, 2001) addressed issues pertaining to consent and minimum necessary based on testimony received at a hearing conducted August 21-23, 2001.
Again through the Subcommittee on Privacy and Confidentiality, the Committee conducted its second public hearing on the implementation of the final rule for the “Standards for Privacy of Individually Identifiable Health Information” (Jan 24-25). The hearings, which were organized in conjunction with the Office of Civil Rights, consisted of more than thirty participants, including health care providers, payers, researchers, members of professional organizations, other users of health care information, and members of the public.
After compiling and analyzing the information from the Privacy hearing, the Committee submitted a letter to the Secretary (March 1) addressing marketing and fundraising issues. The Committee took the position that the final rule should be amended to return to the original approach of the NPRM. For fundraising, the Committee supported the general approach adopted in the final rule indicating that fundraising should remain within health care operations. The Committee also emphasized that public education and outreach are essential in promoting compliance with the privacy rule and in allaying public concerns about the nature and effect of the rule.
In response to the NPRM containing proposed modifications of the Final Rule, the Committee submitted a letter (April 25th) commenting on proposed changes to consent, research and marketing.
Through the Privacy Subcommittee, organizing and conducting a series of national hearings (Boston, Baltimore, MD, Salt Lake City, Utah), to obtain input on what covered entities and affected parties need for technical support and outreach to implement the privacy regulations.
Received a briefing from the Department’s Deputy Chief information officer who provided an overview of departmental information systems, including prospects for integrating models. Also heard from the Department of Defense E-Health Initiative, the military’s first central effort to develop enterprise-wide business rules and a single, common Internet portal for all DoD patients, providers and managers
Heard from the director of the DHHS Office for Human Research Protections who described efforts to educate the health and research communities about the important provisions of human research protection, including references to informed consent.
Received a briefing from GAO representatives about their report: Record Linkage and Privacy which focused on linkage projects involving person-specific data. Presenters provided a /framework/ describing aspects of their record linkage study in terms of ( 1) how record linkage can create new research and statistical information, (2) why linkage heightens certain privacy issues, (3) what kinds of techniques might help address privacy issues, and (4) how data accountability and responsibility for data might be enhanced, with particular attention to privacy and confidentiality concerns.
Heard a panel presentation from representatives in the field about Public Key Infrastructure, the role of PKI in electronic signatures, and other more complex administrative transactions (Febr 2002).
Through the Subcommittee on Standards and Security, heard testimony on current procedure code sets adopted under the HIPAA transactions and code set rule, including ICD-9-CM, Volume 3; CPT, CDT and alphanumeric HCPCS (Feb. 6-7, 2002). Presentations were made by code set developers, as well as industry representatives and users.
Organized a second hearing on emerging procedure code sets and gaps (April 9-10) which included presentations on ICD-10-PCS, developed by CMS as a replacement for ICD-9- CM, Volume 3 (procedures), and on previously identified gaps in procedure code sets, such as those for home infusion and alternative medicine.
Organized a hearing on transition to ICD-10-CM (May 29-30) with the NCHS Director leading off the testimony. The second day focused on the issues of procedure codes, specifically the Healthcare Common Procedure Coding System (HCPCS). It was generally acknowledged that ICD-9-CM is outdated and needs to be replaced. There was considerable discussion about the criteria for a procedure classification, with reference to the report prepared by the NCVHS in 1993. The NCVHS is considering updating its 1993 report with an analysis of these issues.
In response to the testimony, the Subcommittee is deliberating with issue of recommending that an NPRM be developed to replace ICD-9-CM, Vols. 1, 2 and 3 with ICD-10-CM (diagnoses) and ICD-10-PCS (procedures for inpatient only) as the next version of the HIPAA medical code sets. Extensive review and discussion continued throughout summer meetings (both Subcommittee and full NCVHS meetings). Further considerations will include plans to recommend that an in-depth impact analysis of transition to the new code sets be conducted, to articulate both costs and benefits.
Through the Subcommittee on Standards and Security, heard extensive testimony on terminology by speakers from private, federal, corporate interests (Aug 28). A second day’s panel offered insight about coordinating ongoing healthcare standards initiatives, including a representative from the United Kingdom who described standards implementation in that country.
Through the Subcommittee on Standards and Security, the Committee was instrumental in coordinating efforts for the delayed implementation of the transaction and code sets rule to 2003. The NCVHS has responsibility under the Administrative Simplification Compliance Act to review a sample of the extension plans submitted and distribute solutions to address compliance problems. The NCVHS worked closely with CMS and the industry in fulfilling these responsibilities agreeing with WEDI that the plan should be minimally burdensome to the industry but should encourage attention to milestones that will ensure implementation of the rule by the new date of October 16, 2003.
Continues to serve in a leadership position in advising the Department and commenting on initiatives and organizing panels of experts and advisors in the area of race and ethnicity in health statistics. The Subcommittee on Populations organized a hearing (February 11-12) where panelists described their plans and experiences in implementing the OMB Standards for Federal Data on Race and Ethnicity. The focus of the discussion was on the ability of federal surveys to measure health disparities in racial and ethnic groups. In an earlier presentation, the Full Committee heard from a panel on the Use of Race and Ethnicity in Health and Social Statistics, consisting of NCHS, Bureau of the Census and Joint Center for Political and Economic Studies representatives (June 2001).
Through the Subcommittee on Populations, conducted a well-received hearing in Denver, Colorado (Sept 27th) reflecting its ongoing theme on collecting racial and ethnic data in health statistics. Intentionally scheduled to follow the OMH meeting on Native American Health, the hearing focused on issues related to the collection and use of data on race and ethnicity for American Indian/Alaska Native (AI/AN) populations. Speakers and panelists addressed identification of AI/AN health disparity issues, health disparity from the tribal perspective, and urban/rural Indian issues
Distributed “Classifying and Reporting Functional Status” to targeted audiences, including WHO collaborating centre membership. Functional status is one of the elements previously recommended by the NCVHS in its 1996 report on Core Health Data Elements for enrollment and encounters. The report recognizes the significant value of functional status information and identifies the International Classification of Functioning, Disability and Health (ICF) as the only viable candidate for a code set for classifying functional status in clinical and administrative records.
Re-printed “Medicaid Managed Care Data Collection and Reporting” and distributed to organizations with special interest in issues. Prepared letter (October 19, 2001) reminding the Secretary of a key recommendation in the NCVHS report on Medicaid Managed Care, encouraging that state Medicaid agencies collect uniform enrollment data, including race and ethnicity data, along with data on language, reason for eligibility (e.g. disability), and other demographic information as part of the enrollment process. The Committee believes that without race- and ethnic-specific data, it will be difficult to evaluate efforts to eliminate disparities in health care, one of the longstanding priorities of the Department.
Collaborating with the Agency for Healthcare Research and Quality by serving in an advisory capacity on the new National Quality Report and report on racial and ethnic health disparities.
The Workgroup on Quality conducted a hearing in Chicago, IL (July 25th) and facilitated public comments on initial planning for development of the National Healthcare Quality Report. Per the legislative mandate to AHRQ, the report will include a broad set of performance measures that will be used to monitor the nation’s progress toward improved health care quality. The Quality Workgroup also discussed the development of its own report, targeted to be completed in early 2003.
Received information from a Quality hearing (Dec 12th) discussing public and private sector patient safety initiatives. Speakers discussed such issues as patient safety initiatives including health errors reporting systems, quality tracking systems, federal quality oversight initiatives, and automated clinical data.
Heard from a panel (June 2002) which focused on data issues, barriers and limitations in measuring the quality of mental health and substance abuse services. Panelists provided information pertinent to their experience in developing and implementing measures of the quality of care delivered to patients with mental health and/or substance abuse (MH/SA) problems. Speakers shared their experiences in soliciting, designing and implementing quality measures for MH/SA services that rely on one or more of a variety of different data sources, including administrative (claims/enrollment) data, medical records and/or patient or provider surveys.
Received several briefings from the NCHS Director on the status of Center activities including major surveys, new features, and update on the new building. In a follow-up briefing requested by the Committee, the Director provided an overview of the Center’s activities in terms of past and current budget allocations and noted that the cost of altering surveys sometimes carried severe budget implications resulting in serious priority setting decisions. The Committee will serve as a resource for advice about possible tradeoffs in this tight budgetary climate. Effective the Sept 2002 meeting, the Center Director was identified as a liaison representative to the Committee and Executive Subcommittee.
The Executive Subcommittee also agreed to invite liaisons from NIH and CDC, in addition to those from AHRQ, CMS and NCHS.
Continued its strategic planning process at an Executive Subcommittee retreat (July 26, 2002).

Remarks: (Additional Meetings for Committee membership-2002)

National Committee on Vital and Health Statistics members were designated by the Chair to monitor or participate in the following meetings as a source of information concerning issues addressed by the Committee:

NCVHS chair participated at the 3rd Annual Public Health Data Standards Consortium Steering Committee Meeting (Mar 20-21, 2002);
NCVHS Chair (as NHII Chair) presented report, Information for Health: A Strategy for Building the National Health Information Infrastructure to Data Council (January 2002 ).
Discussions about “Health Statistics for the 21st Century” included a presentation by the 21st Century Workgroup chair to the Data Council (June 2002) and to the Data Users Conference (July 2002);
Chair for the Subcommittee on Populations participated at the Congressional Black Caucus Health Braintrust, chaired by Congresswoman Donna Christian Christianson where she presented issues pertaining to population health, specifically eliminating racial and ethnic health disparities (April 12, 2002)
NCVHS is represented by the chair or Executive Staff Director at the DHHS Data Council monthly meetings;
In addition, the Committee members held numerous conference calls, many of which were conducted in lieu of subcommittee and workgroup meetings, to plan their activities and implement their agenda.

FY 2002 Reports

NHII Report, Information for Health: A Strategy for Building the National Health Information Infrastructure (November 2001)
Classifying and Reporting Functional Status – Re-printed for targeted distribution ( December 11, 2001)
Medicaid Managed Care Data Collection and Reporting– Re-printed for targeted distribution (April 2002)
Fifth Annual Report to Congress on the Implementation of the Administrative Simplification Provisions of the Health Insurance Portability and Accountability Act

NCVHS Homepage Reports

[The most recent reports and recommendations are listed first]

September 27, 2002 Letter to the Secretary – Comments on Preparations for Implementation of Privacy and Confidentiality regulations
June 27, 2002 Letter to the Secretary - NCVHS's comments to the Secretary regarding the NPRM (CMS-0003-P and CMS-0005-P) proposing modifications to the original HIPAA transaction and code set standards
April 25, 2002 Letter to the Secretary - Privacy and Confidentiality Additional Recommendations and Response to NPRM
March 1, 2002 Letter to the Secretary - Privacy and Confidentiality Recommendations on Marketing and Fundraising
February 27, 2002 Letter to the Secretary - Recommendations on implementation of NEDSS
February 27, 2002 Letter to the Secretary - Recommendations for the first set of PMRI standards
November 21, 2001 Letter to the Secretary on Research recommendations as it relates to the new Privacy Rule
November 15, 2001 Final Report (Acrobat) NHII - Information for Health: A Strategy for Building the National Health Information Infrastructure
October 19, 2001 Letter to CMS on racial and ethnic data collection
October 1, 2001 Letter to the Secretary on Consent Requirements and Minimum Necessary Provisions as it relates to the new Privacy Rule

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