Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

June 16-17, 2004

Hubert H. Humphrey Building
Washington, D.C.

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on June 16-17, 2004 at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:

Committee members

  • John R. Lumpkin, M.D., M.P.H., Chair
  • Jeffrey Blair, M.B.A.
  • Justine M.Carr, M.D.
  • Simon P. Cohn, M.D., M.P.H., FACP
  • Peggy B. Handrich
  • Richard K. Harding, M.D.
  • John P. Houston, Esq.
  • Robert W. Hungate
  • Eugene Lengerich, V.M.D.
  • A. Russell Localio, Esq., M.A., M.P.H., M.S.
  • Vickie Mays, Ph.D.
  • Harry Reynolds
  • Donald M. Steinwachs, Ph.D.
  • C. Eugene Steuerle, Ph.D.
  • Kevin C. Vigilante, M.D., M.P.H.
  • Judith Warren, Ph.D, RN

Absent:

  • Mark A. Rothstein, J.D.
  • Stanley M. Huff, M.D.

Staff and liaisons

  • Marjorie Greenberg, NCHS/CDC, Executive Secretary
  • James Scanlon, ASPE, Executive Staff Director
  • J. Michael Fitzmaurice, Ph.D., AHRQ liaison
  • Judith Berek, CMS liaison
  • Virginia Cain, NIH liaison
  • Ed Sondik, Ph.D., NCHS liaison
  • Steve Steindel, Ph.D., CDC liaison
  • Aldonna Robbins, NCHS Board of Scientific Counselors liaison

Others

  • Jackie Lee Adler, NCHS
  • Katherine Jones, NCHS
  • Debbie Jackson, NCHS
  • Randy Levin, M.D., FDA
  • Erin Karp, Greenberg Traurig
  • Holly Blodgett, Amisys Synertech Inc.
  • Anna Poker, AHRQ
  • Beth Tossell, Health Privacy Project
  • Emily Stewart, Health Privacy Project
  • Carol Bickford, Amer. Nurses Assn.
  • Frank Kyle, Amer. Dental Assn.
  • Evelyn Kappeler, OPHS
  • Carol Monaco, Amer. Osteopathic Assn.
  • Barry Dickman, VA
  • Russell Hinds, VA
  • Miryam Granthon, ODPHP
  • Dan Rode, AHIMA
  • Michael DeCarlo, BCBSA
  • Stan Edinger, AHRQ
  • Edna Paisano, IHS
  • Shelly VerPloeg, National Academies
  • Denise Love, NAHDO
  • Carl Volpe, Ph.D., WellPoint
  • Dinah Wiley, OCR
  • Kathryn Serkes, Assn. Amer. Physicians & Surgeons
  • Jennifer Madans, Ph.D., NCHS
  • Edward Larsen, E.R.Larsen, Inc.
  • Lisa Grabert, NCHS
  • Julia Engel, Greenberg Traurig
  • Edward Kelley, Ph.D., AHRQ
  • James Lubitz, Ph.D., CDC
  • Jennifer Kowalski, AHRQ
  • Ellen Hope, AHRQ
  • Michael Park, HHS
  • Anders Gilberg, AMA
  • Jay Crowley, FDA
  • R. Lenel James, BCBSA
  • Cynthia Wark, CMS
  • Marilyn Luke, AHIP

Note: The transcript of this meeting is posted on the NCVHS Web site, http://ncvhs.hhs.gov/lastmntr.htm

EXECUTIVE SUMMARY

ACTIONS

  1. The Committee approved a letter to the Secretary on privacy and banking, as written.
  2. A motion was passed approving a letter to the Secretary on supply codes, with one non-substantive amendment.
  3. The Committee approved a letter to the Secretary on privacy and schools, as amended.
  4. The Committee approved a letter to the Secretary on privacy and law enforcement, as amended.
  5. The Committee passed a motion adopting the commentary of the Subcommittee on Populations, with the following conditions: 1) The Chair will review future editorial changes to determine whether they are substantive or purely wording. 2) The title chosen by the Subcommittee will be re­viewed by the full Committee and, barring any objection, substituted for the current title.

UPDATE FROM THE DEPARTMENT

James Scanlon, ASPE
HIPAA Business: Maria Friedman, DBA, CMS
Privacy Rule Compliance Update: Susan McAndrew, OCR

Mr. Scanlon reported that the Secretary made several important announcements at a May 6 meeting with health information technology leaders:

  • HHS and other federal health care agencies are adopting and endorsing 15 additional Consolidated Health Informatics (CHI) standards.
  • SNOMED-CT can now be downloaded free from the NLM Web site.
  • HL-7 has voted favorably on a functional model on standards for EHRs.
  • The first National Health Information Technology Coordinator, Dr. David Brailer, has been appointed at HHS. (Dr. Brailer speaks later in this meeting.)

He also discussed the President’s budget priorities for 2005 and the new National Academy of Sciences report on race/ethnicity data.

Ms. Friedman reported that the proportion of HIPAA-compliant claims coming into Medicare has increased to 86 percent, following an upward trend. Publication of NPRMs on claims attachments and the national plan ID is expected by the end of the year, and a regulation on transactions and code sets policy modifications is under development. CHI is working closely with Dr. Brailer’s office to contribute to the agenda for promoting EHRs.

Ms. McAndrew reported that OCR had received 6,557 complaints as of the end of May, about half of which have been closed. The case rate is creeping up and is now 120-130 a week. No sanctions have yet been issued, but about 80 cases that appear to involve an intentional disclosure in violation of the rule have been referred to the Department of Justice. At the request of the Senate Health Committee, the GAO is doing a report on privacy implementation, and OCR is creating a database of complaints for this review. (The NCVHS Privacy Subcommittee will offer suggestions on data analysis.) OCR has initiated a privacy listserv through which it will disseminate guidance as it is produced. Two consumer documents that interpret the privacy rule for consumers (in seven languages) are nearly ready for release.

The group discussed the concerns of researchers, privacy advocacy groups, and emergency care/EMS providers related to the privacy rule. Dr. Cohn observed that the area that should be of particular concern to privacy advocates is the many non-covered entities accessing individual identifiable health information.

PRIVACY LETTER — Dr. Harding

On behalf of the Subcommittee on Privacy and Confidentiality, Dr. Harding presented letters to the Secretary on banking, law enforcement, and schools, all based on findings from a February hearing. He read the recommendations in, and received comments on, each letter. The banking letter was approved as read; the other two were sent back to the Subcommittee for revisions and approved on day two, as amended.

STANDARDS AND SECURITY LETTER— Dr. Cohn

For the Subcommittee on Standards and Security, Dr. Cohn read the recommendations in a draft letter to the Secretary on supply codes. He explained that the Subcommittee plans to hold a hearing on supply codes in the next year, so this letter deals with a limited topic. A slightly revised version of the letter was approved.

POPULATIONS REPORT —Dr. Mays

Noting that the new report of the National Academy of Sciences Committee on National Statistics (CNStat) would be presented later in this meeting, Dr. Mays submitted for discussion and approval a “summary” and set of overarching recommendations on the collection of data on race and ethnicity. The Subcommittee hopes the document will contribute to the national discussion expected to result from the new National Academy report. She read the report aloud, and members suggested various revisions. They also talked at some length about the larger implications of the topics addressed, especially for the private sector. They agreed that the current document, produced before a planned full-length report is written, should not be called a summary but a commentary; instead, the two will be treated as separate and complementary documents. The document was referred to the Subcommittee for revision based on this discussion. On day two, Mr. Localio presented the revised document to the Committee. Following discussion, the revised commentary was conditionally approved (see Actions, above).

CNSTAT REPORT: DHHS COLLECTION OF RACE AND ETHNICITY DATA

Shelly Ver Ploeg, Ph.D., National Academy of Sciences; Denise Love, NAHDO; and Dr. Carl Volpe, Wellpoint

This study and report were congressionally mandated in 2000 and sponsored by DHHS. The panel’s general conclusions are as follows:

  • Measures of race and ethnicity should be obtained in all health and health care data systems.
  • Measures of SEP should, where feasible, be obtained along with data on race and ethnicity.
  • Measures of acculturation and proxies such as language use, place of birth, and generation and time in the U.S. should, where feasible, be obtained.
  • Health and health care data collection systems should return useful information to the institutions and local and state government units that provide the data.
  • Linkages of data should be used whenever possible, with due regard to proper use and the protection of confidentiality in order to make the best use of existing data without the burden of new data collection.

The presenters reviewed the panel’s recommendations for federal, state and private sector data systems, and Dr. Volpe said the private sector was “one of the more perplexing areas for the committee to look at.” Dr. Ver Ploeg said that uncharacteristically, this panel was asked to look at cost considerations. She and CNSTAT Director Connie Citro have been briefing various agencies and congressional staff on these subjects, and stressing that HHS needs money to implement the recommendations.

In the discussion period, Dr. Steindel commented on the importance of getting the contents of this report and the foregoing discussion with Dr. Mays before a wider audience. In addition, members commented on the potential for linkages, concerns about burden in the private sector, the role of a fully-realized NHII in simplifying data collection and reporting, and the fact that health care disparities should be approached as part of a lar­ger set of quality issues. Both Mr. Scanlon and Ms. Greenberg pointed out that government has been grappling with all these issues since the 1970s. All three presenters expressed confidence that the environment for bringing about change on these long-recognized problems is now more positive.

CDC FUTURES INITIATIVE— Dr. Ed Thompson, CDC

This initiative, which began about 18 months ago, is a response to Dr. Gerberding’s charge to look at where CDC needs to be in 5 to 15 years to have leadership in public health. It reflects an intention to become a more goal-driven organization. After getting input from hundreds of stakeholders around the U.S., the initiative synthesized six strategic imperatives for CDC in the coming decade. They include achieving measurable health impact, being a customer-centric organization, and strengthening its science. Its overarching strategic goals concern 1) preparedness and 2) health promotion and prevention of disease, injury and disability. The CDC also has a new organizational structure, which retains all the centers and in­stitutes but aggregates them into coordinating centers. Dr. Thompson described the new structure in some detail, explaining that a major purpose of the reorganization is to create a structure that is easier for external partners to access.

In the discussion period, members and staff expressed particular interest in the status and stature of NCHS in the new arrangement, and in the relationships among NCHS, the National Center for Public Health Informatics, and the National Center for Health Mar­keting.

NATIONAL HEALTHCARE DISPARITIES REPORT—Dr. Edward Kelley, AHRQ

Dr. Kelley called the disparities report (NHDR) “the most exten­sive examination of health care disparities ever done in the U.S. or any major industrial­ized nation.” He described its production as a learning process, and said AHRQ expects to improve it in coming years. Both it and AHRQ’s National Healthcare Quality Report were mandated by Con­gress, as annual reports. The framework for the quality report is derived from the IOM’s Crossing the Quality Chasm; the dimension of equity, which was included in the IOM framework, is the focus of the disparities report. Dr. Kelley described the production and review process.

The key findings of the disparities report are:

  • Disparities in quality of health care are pervasive.
  • Disparities in access to health care contribute to disparities in quality of care.
  • Management of chronic diseases (“the vast number of clinical areas measured by the report”) presents unique challenges.
  • Opportunities for preventive care are frequently missed.
  • There is more to learn.
  • Greater improvement is possible.

The fact that there is much more to learn, which is true for both reports but particularly for the disparities report, is mostly due to data limitations. For the next report (which will have a chartbook format), AHRQ is working on these limitations, on focused analysis of causation questions, and on better ways to summarize across the data without losing the richness of the 250 measures. Dr. Kelley stressed that the report is only a relatively small piece of the entire picture on the NHDR, and he described the planning around AHRQ’s “implementation mindset,” to promote action to eliminate health care disparities.

In the discussion period, members commented on identifying factors amenable to change, measuring small-area variations, the importance of educational attainment for health, and the quality gap that affects all American sub-populations.

NATIONAL HEALTH INFORMATION TECHNOLOGY

David Brailer, MD, PhD, NHIT Coordinator, DHHS

The Secretary named Dr. Brailer as the Coordinator for Health Information Technology on May 6, in response to an April 27 Presidential Executive Order. His office is directed to work closely with NCVHS. The Executive Order also calls on agencies to do specific functions; for example, DHHS is to develop a plan for using incentives and other mechanisms to accelerate adoption of health IT and information exchange. The Office was asked to deliver a progress report on its strategic plan on July 21 at the HHS NHII Conference. The enumerated functions of the strategic plan include identifying public and private collaboration; identifying technical, scientific and economic barriers and ways to over­come them; identifying costs and benefits for health IT; and exploring privacy and secu­rity issues.

In the discussion period, members talked with Dr. Brailer about his Office’s budget, the need to align benefits for insurers and providers, ways NCVHS could help further NHIT objectives, privacy issues, and the importance of a long-term NHII model to promote the convergence of current activities.

MEDICARE MODERNIZATION REFORM ACT AND CMS QUALITY INITIATIVES

REVIEW—Dr. Mark McClellan, CMS Administrator

In his introduction, Dr. Lumpkin noted that Congress passed the Medicare Moderniza­tion Act (MMA) soon after Dr. McClellan was appointed CMS Administrator. He also noted that as charged by the MMA, NCVHS is working hard on e-prescribing standards. Dr. McClellan discussed e-prescribing as part of the broader effort to “change the way we do things,” and one in which NCVHS has a critical role in identifying consensus and developing standards. He said he hoped the Com­mittee would also help CMS implement pilot programs. The goal is to have e-prescribing in place well before the stated deadline of 2008-9.

He also discussed the Chronic Care Improvement Program, established by Section 721 of the MMA. The “721 program” is another quality improvement initiative, a pilot program that CMS intends ultimately to take national in a fee-for-service Medicare program and then other contexts. It focuses on assisting people with costly chronic illnesses in achieving better outcomes at a lower cost by helping them adopt proven steps in disease and care management. Payment of participating organizations is to be contingent on reduced overall costs, improved clinical outcomes, and improved patient and provider satisfaction. This program will be evaluated in a large-scale randomized trial involving some 300,000 patients in 10 regions, using enhanced data collection. Dr. McClellan said CMS especially needs the Committee’s assistance on validated measures of health outcomes, tracking outcomes for populations, and seeing what interventions actually improve qual­ity and reduce costs.

In the discussion period, members raised questions about targeting underserved groups in the chronic disease pilot, incentives to promote physician adoption of EHRs, quality data col­lection issues, and ways to speed up the timetable for e-prescribing. Dr. McClellan encouraged NCVHS to “weigh in heavily” on the proposed drug benefit regulation with regard to designing it to support effective and timely e-prescribing.

Members expressed appreciation for the critical liaison work and staff support provided to NCVHS by several CMS staffers.

REPORTS FROM SUBCOMMITTEES AND WORKGROUPS and FUTURE AGENDAS FOR NCVHS MEETINGS: Please see detailed summary below for the brief summaries of these agenda items.

DETAILED SUMMARY

—DAY ONE—

CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA

Dr. Lumpkin called the meeting to order and commented on the “fascinating environment” in which the meeting takes place, with growing Executive Branch attention to the NHII in ways consonant with past NCVHS recommendations. Introductions were made. Ms. Greenberg noted that members had been supplied with a draft compilation of health data policy acronyms.

UPDATE FROM THE DEPARTMENT

James Scanlon, ASPE

The Secretary convened more than 100 leaders in health information technology on May 6 in search of ways to accelerate the use of electronic health records (EHRs) and the NHII generally. Several NCVHS members attended. The Secretary made several important announcements:

  • HHS and other federal health care agencies are adopting and endorsing 15 additional Consolidated Health Informatics (CHI) standards to promote the electronic interchange of health care information. The hope is that the federal example will serve as a guide for industry.
  • SNOMED-CT can now be downloaded free from the NLM Web site.
  • HL-7 has voted favorably on a functional model on standards for EHRs.
  • The first National Health Information Technology Coordinator, Dr. David Brailer, has been appointed at HHS. The Coordinator is charged with developing and directing a strategic plan to guide nationwide implementation of interoperable information technology in both public and private sectors. (Dr. Brailer speaks later in this meeting.)

On the HHS-commissioned National Academy of Sciences study on race and ethnicity data, Mr. Scanlon noted that its report was released in April, and the Committee will be briefed on its findings later in this meeting. Dr. Lumpkin served on the committee.

On budgets, the President’s 2005 budget awaits congressional action. It includes several NHII and data policy initiatives, including $10 million for investments in data standards. HHS hopes to continue work on medication standards, and the budget includes $50 million for planning, demonstration and evaluation grants on improving patient safety. Awards will be announced later in the year. Another $50 million is budgeted for demonstrations of community, regional and local health information interchange. On the population statistics side, the President’s budget increases the NCHS budget by $22 million. This was the Data Council’s highest priority recommendation in the 2005 budget. Planning has begun on priorities for the 2006 budget.

HIPAA Business: Maria Friedman, DBA, CMS

The proportion of HIPAA-compliant claims coming into Medicare has increased to 86 percent, with an upward trend. Most of the complaints received concern transactions, code sets and claims, primarily from small providers against health plans and clearinghouses.

NPRMs on claims attachments and the national plan ID are expected to be published by the end of the year, and a regulation on transactions and code sets policy modifications is under development.

Brainstorming among partners about next steps for CHI has generated a consensus that the most important activities are facilitating implementation of adopted standards, enhancing usability of adopted standards, and making them support critical business needs. CHI is working closely with Dr. Brailer’s office to contribute to the agenda for promoting EHRs.

Ms. Greenberg said that CHI, which began as part of the OMB e-gov initiative, is continuing as a partnership activity among multiple federal agencies, and its work will be integrated into the federal architecture. Dr. Cohn expressed hope that CHI will be able to retain a focus and promote standardization. It was noted that Dr. Brailer’s office is responsible for coordinating federal-wide activity, and it will support integration.

Privacy Rule Compliance Update: Susan McAndrew, OCR

OCR had received 6,557 complaints as of the end of May, of which about half have been closed. The case rate is creeping up and is now 120-130 a week, indicating that consumers are becoming aware of their rights and exercising them. No sanctions have yet been issued, but some cases have been referred to the Department of Justice (DOJ). At the request of the Senate Health Committee, the GAO is doing a report on privacy implementation, and OCR is creating a database of complaints for this review. Noting the Committee’s past interest in analyzing the data, Ms. McAndrew invited suggestions from the Committee of topics for analysis.  Her office has continued to meet with stakeholders, and it appreciates the Committee’s recommendations on issues for the research community. OCR has initiated a privacy listserv through which it will disseminate guidance as it is produced. Two consumer documents that interpret the privacy rule for consumers are nearly ready for release. The plan is to translate all consumer materials into seven languages.

Mr. Blair expressed concern about media coverage of negative messages from privacy advocacy groups that are fearful of the HIPAA initiative, urging that they not just be dismissed as misinformed. He urged that the Department reach out to these groups and hold an open forum so they can air their concerns and HHS can clarify, on the record, what the HIPAA privacy regulations actually do and say.

Mr. Houston suggested that in developing guidance documents, OCR take into consideration common complaints from consumers based on misunderstandings of the rule. Ms. McAndrew said her office is doing this and also looking at misconceptions revealed in press coverage. It also issues consumer-oriented FAQs, largely regarding the ability of friends and family to communicate with the patient and his/her physician. Following up on his past requests for statistics on complaints, Mr. Houston said he would provide Ms. McAndrew with specific requests. Mr. Reynolds noted that data would be useful on complaints against employers, a group some are concerned about. However, Ms. McAndrew said complaints against employers do not appear to be on the rise, although complaints against group health plans may be a surrogate for employers. OCR is looking at this area, and it plans to get some technical assistance out to the employer group health plan community. Asked to elaborate on the cases referred to the DOJ, she said these are roughly 80 cases that appear to involve an intentional disclosure in violation of the rule.

Mr. Localio commented on researchers’ distress about the ways the privacy rule hampers their research, and he asked how OCR entertains and handles these complaints. Ms. McAndrew said all complaints are documented, but only violations of the rule are addressed. Regarding the complexity of authorization forms and process, she noted that the form is the responsibility of each covered entity.

Dr. Lumpkin said he is picking up concerns from emergency care and EMS providers that may warrant a hearing. In response to Mr. Blair’s concerns, he observed that some advocacy groups’ issues with the privacy rule may be a matter of a legitimate difference of opinion rather than of their simply being misinformed. He expressed doubt that a face-to-face meeting would generate the kind of balanced media attention that would be hoped for. Still, he agreed about urging OCR not to miss an opportunity to try to clarify the rule.

Dr. Cohn observed that the area that should be of particular concern to privacy advocates is the many non-covered entities dealing with or accessing individual identifiable health information.

PRIVACY LETTER — Dr. Harding

On behalf of the Subcommittee on Privacy and Confidentiality, Dr. Harding presented letters to the Secretary on banking, law enforcement and schools, presenting findings from a February hearing. He read the recommendations in, and received comments on, each letter. A motion was passed approving the letter on banking, as written. Modifications to the law enforcement letter were suggested; a revised version will be presented on day two of this meeting. The letter on schools generated discussion about the need for federal-state cooperation in this area, and the importance of timeliness for the recommended actions. A revised version of this letter, too, will be presented on day two.

STANDARDS AND SECURITY LETTER— Dr. Cohn

For the Subcommittee on Standards and Security, Dr. Cohn read the recommendations of a letter to the Secretary on supply codes. He explained that the Subcommittee plans to hold a hearing on supply codes in the next year, so the letter at hand deals with a limited topic. A motion was passed approving the letter, with one non-substantive amendment

POPULATIONS REPORT —Dr. Mays

Noting that the new report of the National Academy of Sciences Committee on National Statistics (CNStat) will be presented later in this meeting, Dr. Mays said the Subcom­mit­tee is submitting for Committee approval a summary and set of overarching rec­ommen­dations on the collection of data on race and ethnicity. It plans to complete a detailed report in the next few months, based on a series of hearings hosted by the Subcommittee. (Members re­ceived a draft outline of the full report.) The Subcommittee hopes to use the summary and overarching recommendations to contribute to the national discussion expected to re­sult from the new National Academy report. She read the draft aloud and invited com­ments, noting that complementary NRC recommendations are refer­enced.

The group paused for a brief discussion of the concept of “socioeconomic position (SEP),” which is now preferred to “socioeconomic status (SES)” because it looks more broadly at a person’s lifetime economic history and at assets in addition to income. The field is still working out the best ways to measure it. Mr. Blair commented on the privacy and con-fidentiality issues surrounding the information, and Dr. Mays agreed that this would be a worthwhile subject for a hearing as well as for methodological research. Dr. Lumpkin pointed out that in population surveys, all individual-level data are aggregated.

Members asked a few questions, and offered suggestions to clarify and enhance the draft summary and recommendations. The Subcommittee was encouraged to acknowledge that HHS has already done constructive work to improve race and ethnicity data, and also to make it clear that because OMB, not HHS, is in charge of the race/ethnicity standard, any modifications will require collaboration.

There was extended discussion of the larger implications of the topics addressed in this report. Mr. Reynolds commented on the importance of applying the principles in the proposed report to “operational recommendations for the real world,” such as what information belongs on a claim. He asserted that the recommendations may not go far enough in saying that “the current way that we think about ourselves and capture data is broken.” He urged the Committee to keep these broader applications to the health care setting in mind in the future, as it develops recommendations in this area. After pointing out that the present summary and recommendations are focused on population-based survey data, Ms. Greenberg noted the Committee’s historic interest in cross-cutting approaches between population-based and administrative data. She pointed out the potential for future interactions between the Standards and Populations Subcommittees around administrative data, and noted that vital statistics are a good example of an administrative data set that has significant population health uses. Dr. Lumpkin noted a recent report by the Robert Wood Johnson Foundation and America’s health insurance plans on improving race and ethnicity data as part of quality improvement. It indicates that recognition of disparities is causing a blurring of the line between different types and uses of data. Dr. Cohn cautioned against getting into the more controversial implications for administrative data in the present report.

Members agreed that the current document, produced before the planned full-length report has been written, should not be called a summary but a commentary; instead, the two will be treated as separate and complementary documents.

CNSTAT REPORT: DHHS COLLECTION OF RACE AND ETHNICITY DATA

Shelly Ver Ploeg, Ph.D., National Academy of Sciences; Denise Love, NAHDO; and Dr. Carl Volpe, Wellpoint

Dr. Ver Ploeg, the Study Director for the CNStat panel, said the study was congressionally mandated in 2000 and sponsored by DHHS. The pre-publication copy of the final report was released in late April. The panel, which was directed by Ed Perrin, former Director of NCHS, was charged with the following:

  • reviewing the collection of data on race and ethnicity in DHHS health and health care data systems, and more broadly in state and private sector health and health care data systems
  • identifying the key data needs to evaluate the effects of socioeconomic status disparities (the panel added language and acculturation)
  • identifying and assessing critical gaps in health and health care data systems used to evaluate disparities and suggesting ways in which data gaps can be filled

Ms. Love and Dr. Volpe were panel members. Ms. Love said the panel distinguished between health and health care, which involve different forms of measurement, and it recognized the multidimensional nature of disparities in both areas. The panel focused on the collection of explanatory variables such as race, ethnicity, SEP/SES, and acculturation and language, rather than on outcomes. It recognized the varied purposes of data systems. This partly accounts for the differing content and quality, and it affects what kind of change is feasible. The panel looked at current DHHS data requirements and policies for race and ethnicity data, their adequacy, their implementation, and their relation to state and private sector systems. It also looked at what data should be collected at what level of government or in which sector (private/public), and the barriers and possibilities for improvement.

After noting the diversity of the panel and its concern about burden, Dr. Volpe reviewed the panel’s five general conclusions, which are:

  1. Measures of race and ethnicity should be obtained in all health and health care data systems.
  2. Measures of SEP should, where feasible, be obtained along with data on race and ethnicity.
  3. Measures of acculturation and proxies such as language use, place of birth, and generation and time in the U.S. should, where feasible, be obtained.
  4. Health and health care data collection systems should return useful information to the institutions and local and state government units that provide the data.
  5. Linkages of data should be used whenever possible, with due regard to proper use and the protection of confidentiality in order to make the best use of existing data without the burden of new data collection.

Dr. Ver Ploeg turned to the panel’s recommendations, noting the overlaps among federal, state and private data systems. The panel supports the HHS inclusion policy, which directs its programs, where feasible, to collect race and ethnicity data, as well as its recommendations for the addition of SEP, acculturation and language measures where feasible. It found and reinforced four themes in a 1999 Data Council report on the collection of race and ethnicity data. One was developing feasible approaches for including racial and ethnic groups in national surveys, e.g., periodic and rotating oversampling and doing targeted surveys of subgroups. It also reinforced the Data Council’s findings about improving the collection and analysis of SES, language and acculturation data; ensuring the collection of race and ethnicity data in administrative records, and developing mechanisms for linking records across data systems. The panel encouraged HHS to develop an implementation plan whereby it could measure its progress in implementing the 1999 recommendations.

The panel looked at the data collection systems for the Medicare programs and found that race and ethnicity data in that database are “spotty.” CMS has worked to get better data, but it relies on the SSA for data. The panel recommended that CMS develop a program to collect race and ethnicity and SEP data for current Medicare enrollees. It found considerable confusion about the new OMB categories, what the minimum categories are, and how to aggregate subcategories, and it recommended that the Department provide more guidance on implementing the OMB standards. It encouraged HHS to report differences in race and ethnicity by different SEP levels.

In its recommendations for states, the panel again stressed a multi-sector, multi-level approach. Practices among states, and among various systems within states, vary considerably. The panel recommended establishment of minimum standards for data collection, and it asked DHHS to provide guidance and technical assistance to states.

Dr. Volpe reported that the private sector was “one of the more perplexing areas for the committee to look at.” It divided the sector into hospitals, physicians and physician groups, and health plans, noting the different data issues and accomplishments in each category and the wide variety among health plans. It recommended that DHHS require health insurers, hospitals, and private medical groups to collect data on race, ethnicity, SEP, and acculturation and language. This was a controversial recommendation but was supported in testimony. A related recommendation is for federal leadership. Finally, the panel recommended creation of a service to geocode and link patient addresses to census data, with appropriate privacy protections, for development of geographically linked analytic data sets.

Dr. Ver Ploeg said that uncharacteristically, this panel was asked to look at cost considerations. She and CNSTAT Director Connie Citro have been briefing various agencies and congressional staff on these subjects, and stressing that HHS needs money to implement the recommendations.

Discussion

Dr. Steindel commented on the importance of getting the contents of this report and the foregoing discussion with Dr. Mays before a wider audience.

Dr. Cohn supported the recommendations about linkage and asked how far the panel thought linkage would go toward filling data gaps. Dr. Volpe said the group did not see it as a complete solution, but more as a way to bring more richness to the data. Ms. Love said that at the state level, a lot of linkage already goes on to fill data gaps.

Dr. Harding expressed concern about adding any data collection requirements to health care institutions already burdened with administrative costs, and stressed that any addi­tional information would need to be useful to the collector. Dr. Volpe agreed that “the in­cremental value associated with incremental cost” is a key issue for the private sector.

Providing the Departmental perspective, Mr. Scanlon noted that government has been grappling with all these issues since the 1970s. The Senate ordered the NRC study to find out more about the status of race and ethnicity data before any consideration of mandating collection of these data. The alternatives for improving collection are either a congressional mandate or working through industry processes such as SDOs, as in HIPAA. Ms. Love expressed optimism about the HIPAA route.

Dr. Volpe shared a personal observation that the health plan representatives working on these issues are generally not CEOs, and these issues are “not on CEOs’ radar screens.” And with “an issue as complicated and controversial as this, … it’s easier just to say no and move on.” He added that congressional action gets these issues on the radar.

Ms. Greenberg observed that well-reasoned recommendations like those by the CNStat panel have been coming out for decades, and she asked the speakers’ views on major barriers to making it happen. Dr. Ver Ploeg observed that the IOM report, Unequal Treatment, raised awareness to a new level. Ms. Love said that at the state level, getting disparities data is becoming a high-priority policy issue. Much of the data are already collected but not used, and that is changing. Similarly, Dr. Volpe said he was seeing “significant change on the private side,” with a growing emphasis on quality issues. Dr. Mays supported this point by noting the defeat of a recent California ballot initiative to block data col­lection by race and ethnicity. A persuasive argument for defeating it was the need for the data in health care and science. She added that the Subcommittee on Popula­tions has found strong interest in its hearings, and people in Congress are interested in continuing the dialogue. Resources are still a problem, but the timing is right for the dialogue and new policy.

The group discussed the part a fully-realized NHII will play in simplifying data collection and reporting so people only have to supply personal information once and provider costs of data collection are minimized. Mr. Blair commented on the possible use of pay-for-performance to improve the behavior of health care providers and institutions with respect to health care disparities. Dr. Lumpkin agreed that health care disparities are appropriately regarded as part of the lar­ger set of quality issues.

The Committee then recessed into subcommittees and work groups, to meet again the following day.

—DAY TWO—

CDC FUTURES INITIATIVE— Dr. Ed Thompson, CDC[1]

This initiative, which began about 18 months ago, is a response to Dr. Gerberding’s charge to look at where CDC needs to be in 5 to 15 years in order to have leadership in public health. It reflects an intention to become a more goal-driven organization. After getting input from hundreds of stakeholders around the U.S., the project synthesized six strategic imperatives for CDC in the coming decade:

  • Achieving measurable health impact
  • Being a customer-centric organization (the customer being the American public)
  • Strengthening its science through public health research (including translating bench research into applied interventions and then evaluating them, with greater emphasis on extramural peer-reviewed research)
  • Providing leadership in the nation’s health system (especially by building the public health infrastructure)
  • Establishing global health priorities (with an increased focus on global health and international cooperation)
  • Becoming more effective and accountable in its business practices

In addition, CDC has identified two overarching strategic goals:

  • Preparedness: People in all communities will be protected from infectious, environ­mental, and terrorist threats.
  • Health promotion and prevention of disease, injury and disability: All people will achieve their optimal lifespan with the best possible quality of health in every stage of life.

Dr. Steinwachs asked how CDC planned to coordinate extramural research agendas with NIH and AHRQ. Dr. Thompson noted that some “overlap” among agencies’ research is not a bad thing, in contrast with “unnecessary duplication.” CDC will focus on more applied re­search and its translation into public health practice. The Center has designated an of­fice to coordinate with other research agencies and liaisons have been created, all with the goal of a coordinated HHS research agenda.

The CDC also has a new organizational structure, which retains all the centers and in­stitutes but aggregates them into coordinating centers. The first step is a transitional de­sign that will be further developed over the coming months. CDC will have four new Co­ordinating Centers as well as an Office of Global Health and an Office of Terrorism Pre­paredness and Emergency Response whose Directors will report directly to Dr. Gerberding. The coordinating centers are for:

  • Infectious Disease
  • Health Promotion
  • Environmental Health, Injury Prevention and Occupational Health
  • Public Health Information and Services (which includes NCHS as well as the newly created National Centers for Public Health Informatics and for Health Marketing)

In addition, there will be seven offices in the Office of the Director, including:

  • Office of Strategy and Innovation
  • Human Capital

A new Office of Workforce and Career Development will be re­sponsible for training and career development for CDC’s workforce and also for training for the state and local public health workforce across the nation. An Executive Board has been created as CDC’s decision-making group, comprising the directors of the Coordi­nating Centers and Offices as well as a number of Chiefs.

A major purpose of the reorganization is to create a structure that is easier for external partners to access.

Discussion

At Dr. Steinwach’s request, Dr. Thompson explained the relationships among NCHS, the National Center for Public Health Informatics, and the National Center for Health Mar­keting. NCHS will continue to function much as before, but the reorganization seeks to integrate health information more effectively, reflecting the increasing importance of public health informatics. The Marketing Center is focused on information dissemination to improve health status and on integrating the outflow and inflow of information. It and the Center for Health Promotion have somewhat different missions; the concept of health marketing is broader than health promotion. To an expression of distress about the business connotation of the term “marketing,” he said CDC continues to “struggle” with what to call that Center.

To other questions, he said CDC does not need new appropriations to create the new Centers; their directors or acting directors have been appointed, and they are being built. He reviewed the list of directors. The new structure is expected to be fully implemented by October 1, 2004. He explained that the Epidemiology and Public Health Practice Pro­gram Offices have been disassembled and their various functions reassigned to new enti­ties. He noted that the new structure, the names of centers, and the relationships among the parts are all regarded as transitional and may change if other arrangements seem preferable.

Dr. Lumpkin noted that NCHS seems to be “more buried” in the new structure and no longer has a direct relationship with the Secretary. Dr. Thompson stressed that while the NCHS Director no longer reports directly to the CDC Director, this is not intended as a rigid hierarchy, and he is expected to continue to be in interaction with the CDC Director and the Secretary. The new structure is meant to be “more collaborative than CDC has been in the past.”

PRIVACY SUBCOMMITTEE LETTERS— Dr. Harding

Following from the previous day’s discussions, Dr. Harding brought back revised letters on law enforcement and schools. A motion was passed to adopt the letter on schools, as amended. After some additional editing, a motion was passed to adopt the letter on law enforcement, as amended.

NHII WORKGROUP REPORT— Dr. Lumpkin

At its meeting the previous day, the Workgroup focused on its role in the upcoming HHS-sponsored conference on the NHII, particularly on the third day, which features reports back to the Workgroup from breakout sessions, after which the Workgroup will develop next steps for its own planning.

NATIONAL HEALTHCARE DISPARITIES REPORT—Dr. Edward Kelley, AHRQ

Dr. Kelley noted that this report and the AHRQ report on health care quality are closely linked, but his presentation would focus on the first disparities report, published in 2003. He acknowledged the Committee’s support for AHRQ and the Department during the development process for both reports. The disparities report is “the most exten­sive examination of health care disparities ever done in the U.S. or any major industrial­ized nation.” He described its production as a learning process, and said AHRQ expects to improve it in coming years. Both reports were mandated by Con­gress. For the disparities report, the legislative language specified the priority popula­tions and included socioeconomic as well as racial and ethnic factors. The first edition provides a set of baselines, identifies gaps between the actual and the ideal, and pro­motes awareness about disparities. The quality report tracks both national and state data, but because of the number of variables, the disparities report concentrates at the national level.  AHRQ views the disparities report as an opportunity to examine dispari­ties through a quality lens.

The framework for the quality report is derived from the IOM’s Crossing the Quality Chasm. The dimension of equity, which was included in the IOM framework and featured prominently in its “Chasm” report, is the focus of the disparities report. AHRQ looked at the same dimensions as the quality report (effectiveness, safety, timeliness, and patient-centeredness) through the equity lens, and also added about 100 measures on access-related issues. They look at access with respect to getting into the system, getting care within the system, perceptions of care, and health care use. This approach was in accord with IOM recommendations. The IOM’s priority areas for national action were not completed in time for the 2003 reports, so AHRQ based its focal ten clinical conditions on the Healthy People 2010 clinical conditions.

Dr. Kelley described the production and review process. In addition to the in­put from a July 2001 hearing sponsored by the NCVHS Quality Workgroup, AHRQ had two rounds of public comments, one for each report’s measures. Because of the time involved in initial planning for the disparities report and in reaching agreement on the measures, AHRQ had less time to spend “vetting and planning the writing and the layout of the report.” This had some consequences for the review process and the version that was initially released. Ultimately, at the Secretary’s request, the original, July 2003 version was re-released in February 2004. Meanwhile, AHRQ has been working on the 2004 reports.

The key findings of the report are:

  • Disparities in quality of health care are pervasive.
  • Disparities in access to health care contribute to disparities in quality of care.
  • Management of chronic diseases (“the vast number of clinical areas measured by the report”) presents unique challenges.
  • Opportunities for preventive care are frequently missed.
  • There is more to learn.
  • Greater improvement is possible.

Dr. Kelley provided information illustrating each of these key findings, noting that the report’s consensus-based measures and the data amassed may be its most important ongoing legacy. The fact that there is much more to learn, which is true for both reports but particularly the NHDR, is mostly due to data limitations. To cope with data limitations and coding problems, AHRQ constructed a database of 16 states that met strict criteria for reliability. It is working on data issues for future reports. Another issue the Agency had to address is “a limited understanding about best practices for disparities re­duction.” There is also limited knowledge about why disparities ex­ist. Causation was deemed beyond the mandate for the report, but AHRQ is trying to do focused analysis on this question. For the second report, AHRQ also is working on better ways to summarize across the data without losing the richness of the 250 measures.

Finally, he stressed that the report is only a relatively small piece of the entire picture on the NHDR, and AHRQ has an “implementation mindset” about this area. As part of an agency reorganization, AHRQ has adopted a new mission statement that focuses on im­proving the quality of health care for all Americans. Accordingly, the bottom line for the reports is not to spell out a blueprint for the American health care system, but to provide information that can help people improve the care of Americans. AHRQ is focusing on making sure people know about and understand the re­port and are convinced to do something about it. Channels include its new searchable Web site [qualitytools.ahrq.gov] as well as webcasts, peer reviewed literature, work on data tools, and the National Quality Measures Clearinghouse.

The 2004 reports will be in a chartbook format, will focus on a smaller number of “high­light” measures, will include trends over time, and (for the NHQR) will add more subna­tional analyses. The proposed measures are out for comment through June 28. .

Discussion

Dr. Steuerle asked what consideration was being given to distinguishing among the factors that might be amenable to change. Dr. Kelley said this question received attention during the Departmental review. Analysts are limited in their ability to tease out such informa­tion, but AHRQ is talking about exploring such distinctions in its derivative products. Such products on specific issues (e.g., the impact of insurance status) may be called “knowl­edge packs.” Identification of priority topics will be widely vetted.

Mr. Scanlon suggested two-way tables looking at both socioeconomic disparities and race/ethnicity, and offering new data development grants to study causation.

Dr. Steinwachs asked about the possibility of looking at small area variations, given the  essentially local nature of health care. Dr. Kelley said AHRQ received a lot of testimony on the appropriate level of analysis, and this continues to be a subject of discussion. The quality report, especially, is looking at smaller area variations. AHRQ’s derivative products will probably be the vehicle for addressing small area issues. Its first one will be a resource guide and workbook for state leaders. Dr. Steinwachs noted the work of the Center for Studying Health System Change, funded by the Robert Wood Johnson Foundation, which might be the source of information on best practices.

Dr. Vigilante observed that eliminating health disparities will require solutions beyond access and quality and urged that this point be made in AHRQ reports. He stressed the importance of educational attainment and thus the need for an interdisciplinary attack, notably with the Department of Education, to eliminate health disparities. Dr. Kelley said he didn’t think the report is “doing a good job of talking about that,” and he would bring this and the other suggestions back to the interagency workgroup.

Dr. Lumpkin called attention to the huge quality gap between even the best levels of perform­ance and outcomes (i.e., outcomes for whites) and the ideal established by guidelines in various areas. This gap, which affects all population groups, is an issue in its own right, in addition to the issue of disparities.

NATIONAL HEALTH INFORMATION TECHNOLOGY

David Brailer, MD, PhD, NHIT Coordinator, DHHS

Dr. Lumpkin noted that the Secretary on May 6 announced that Dr. Brailer had been named the Coordinator for Health Information Technology, in response to an April 27 Presidential Executive Order that called for a nationwide interoperable health in­formation infrastructure with EHR use for most Americans.

Dr. Brailer began by thanking NCVHS for its leadership, which “led nearly directly” to the formation of his Office and the work it will undertake. Its first assignment is to develop and maintain a strategic plan for using the assets of the federal government and working with the private sector to achieve the goals identified by the President. The NHIT Coordinator also serves as the Secretary’s principal advisor on health IT and directs the Department’s plans in this area. His staff is starting by cataloguing the programs in HHS and related agencies, and consulting widely about the coordination role. The aim is to avoid duplication of effort and to maintain agencies’ focus. The Office is charged with working closely with NCVHS and other advisory bodies, commissions, executive agencies, and so on. It will also advise on health IT and budgets throughout the federal government, at the request of OMB.

The Executive Order also assigns specific functions to various agencies. DHHS is to develop a plan for using incentives and other mechanisms to accelerate adoption of health IT and information exchange. The Office of Personnel Management is exploring ways to use its purchasing power to align with private purchasers to advance IT adoption. The Departments of Defense and Veterans Affairs are to explore how they can support technology transfer of their inventions, especially to rural and underserved areas. The NHIT Office is in discussion with virtually all HHS agencies.

The Coordinator was asked to deliver a progress report on the strategic plan on July 21 at the HHS NHII Conference, a day designated as the Secretary’s Second Health Information Technology Summit. Dr. Brailer said the short-term focus for his office is on the rules of the road and the principles for achieving the goal; tactics and programmatic objectives will fol­low. The enumerated functions of the strategic plan include identifying public and private collaboration; identifying technical, scientific and economic barriers and ways to over­come them; identifying costs and benefits for health IT; and exploring privacy and secu­rity issues.

Dr. Brailer said he looked forward to working with NCVHS, and he expressed optimism about the task ahead.

Discussion

Asked about the budget for his activities, Dr. Brailer said the result of his work should be that the nation is not spending more on health information technology than it does now; indeed, his efforts should produce “net savings to the industry.” In the short run, there are clearly cash flow issues about the investment needed to reap those benefits. The concept of sharing the investment is essen­tial. Part of his goal is to identify where spending is needed, what will be done with the money, and the intended results.

Asked about ensuring that the benefits accrue not just to insurers but also to providers, he agreed that at present, “there is a misalignment of national benefit and investment.” His Office will be looking at this question on three levels—the enterprise, the risk-holder, and society—and trying to develop an ob­jective framework for thinking about the economics.

Dr. Lumpkin commented on the congressional charge to NCVHS to be the health information policy advisor to the Secretary; the Committee’s history of working closely with the Department on HIPAA; and its impact in multiple areas, including the Consolidated Health Informatics process. He asked Dr. Brailer how the Committee could help him advance his important agenda and role. Dr. Brailer responded that health IT has moved to the forefront of the national agenda, and those who have had that vision for a long time need to “go from being the cheerleaders to being very thoughtful and careful to deliver on the promises and ex­pectations.” Noting the importance of getting input, discussion and consensus from pri­vate organizations and ensuring that the government’s policies and actions are balanced and fair, he said NCVHS can take a leadership role in advancing that dialogue. He also commented on the need for a separate effort to “look out for the interests of consumers and physicians” as the transition to health IT takes place. This includes helping to ensure that the strategic plan has substance and stays timely.

Dr. Lumpkin encouraged Dr. Brailer to think explicitly about the role of the Committee in terms of his Office’s work plan. He said the Committee would be willing to modify its schedules and agendas to help the NHIT Office meet its timeframes and deadlines.  Dr. Steuerle suggested that the NHIT Office use forthcoming NHII Workgroup meetings as a forum for getting timely reactions to its plans. He expressed hope that the subgroup on incentives for the NHII conference could put forward examples of possible incentives being considered by Dr. Brailer’s office and get a public reac­tion. Dr. Brailer said he would find that helpful.

After being commended for his excellent staffing decisions and asked how privacy and security issues would come into the picture. Dr. Brailer said privacy is first and foremost, because the trust of Americans is critical. He cited the carefully balanced trade-offs in HIPAA between the conflicting interests of complete privacy and good health care/public health, and said this is probably the best that can be accomplished, given the inherent tensions. He noted the potential improved uses of technology to increase privacy and security protections, and the questions about how to operationalize the rule of law with respect to health information exchange.

Mr. Blair observed that while it is appropriate to be focusing on near-term needs for health IT and its exchange, there is danger that the many initiatives now underway would not converge in the future. He encouraged early work on a set of models to help define the NHII in 7 to 10 years from now, to help ensure convergence. Dr. Brailer agreed. The many models of health system organization and information exchange in the U.S. system have in common the physician-patient encounter and rela­tionship, and for him this is the “touchpoint.” The process must evolve organically, and some variation must be accepted, but within boundaries. In this environment, common denominators must be found for the federal role, the private sector role, and joint actions.

Dr. Lumpkin and other members thanked Dr. Brailer for making it a priority to meet with the Committee.

MEDICARE MODERNIZATION REFORM ACT AND CMS QUALITY INITIATIVES

REVIEW—Dr. Mark McClellan, Administrator, CMS

In his introduction, Dr. Lumpkin noted that Congress passed the Medicare Moderniza­tion Act (MMA) soon after Dr. McClellan was appointed CMS Administrator. He also noted that NCVHS was charged with being involved with e-prescribing, a task that is keeping the Subcommittee on Standards and Security busy over the Summer and Fall, to accommodate an accelerated HHS timetable.

Dr. McClellan acknowledged the Committee’s role in advancing the work on measuring the quality of health care and addressing disparities. He agreed that CMS and NCVHS would “be taking …collaboration/interaction to a new level” as a result of the MMA.

He highlighted aspects of the legislation. So far, about half of the 7 million people ex­pected to enroll in the drug card program have enrolled, and discounts are available for low-income beneficiaries. He noted that there are other important provisions in the leg­islation, of particular relevance to the NCVHS-CMS interaction. New, increasingly com­plex and increasingly personalized forms of medicine for the prevention and management of diseases are emerging, and their effectiveness depends on “changing the way we do things.”

He discussed e-prescribing as part of that change, one in which NCVHS has a critical role in identifying consensus and developing standards, and he said he hoped the Com­mittee would also help CMS implement pilot programs. The goal is to have this in place well before the stated deadline of 2008-9. Forthcoming proposed regulations for drug benefits will include e-prescribing. The concept includes plans to give people better in­formation about medications, as well.

Section 721 of the law is the Chronic Care Improvement Program. As part of its quality improvement efforts, CMS will pay hospitals more next year if they report on 10 validated quality of care measures, and these are to be expanded next year to include validated patient satisfaction measures as well. The “721 program” is another quality improvement initiative, a pilot program that CMS intends to take national in fee-for-service Medicare. It focuses on people with costly chronic illnesses, to assist them in achieving better outcomes at a lower cost by helping them adopt proven steps in disease and care management. The programs are focused on the whole patient, not just the one illness. They will educate patients about their conditions and the reasons for the medical inter­ventions, to improve compliance, and patients will do self-monitoring, to catch complications sooner. Payment mechanisms will change to provide incentives for improved patient out­comes, rather than just for more hospital admissions, as is currently the case. Payment is to be contingent on reduced overall costs, improved clinical outcomes, and improved patient and provider satisfaction. This program will be evaluated in a large-scale randomized trial involving some 300,000 patients in 10 regions, with enhanced data collection. CMS expects to then apply this model in other settings, including those that are not fee-for-service.

CMS needs the Committee’s assistance on validated measures on health outcomes, tracking outcomes for populations, and seeing what interventions actually improve qual­ity and reduce costs. This is all part of a more prevention- and performance-focused ap­proach, Dr. McClellan said. Part of the challenge, he added, is to implement the new measures initiated by the MMA without disrupting existing care.

Discussion

Asked about targeting underserved groups in the chronic disease pilot, Dr. McClellan said the programs are required to be population-based in each participating region; but they will be paying attention to impacts on vulnerable populations, and the regions will be both urban and rural.

To another question, he said CMS has plans to realign incentives to promote physician adoption of EHRs through its pay for performance activities, among others. He noted that the focus on IT must be linked to the focus on improved outcomes. He also expects the use of validated quality measures with hospitals to further promote IT adop­tion.

Members expressed appreciation for the critical liaison work and staff support provided to NCVHS by CMS staffers Judith Berek, Karen Trudel, Maria Friedman and Trent Haywood. Dr. McClelland said their participation in NCVHS also helps CMS do its job more effectively.

Dr. Cohn asked about the speeding up of the timetable for e-prescribing, and Dr. McClelland said pilots would be implemented soon after standards are available. Some pilot programs are already influencing care; these need to be catalogued and analyzed, looking for good models. He encouraged NCVHS to “weigh in heavily” on the proposed drug benefit regulation with regard to designing it to support effective and timely e-prescribing.

Dr. Steinwachs observed that current HIPAA transactions do not allow for the transmis­sion of sufficient quality of care data on claims, and he asked how CMS planned to get needed data for its chronic disease project. Dr. McClelland said claims data pro­vided some but not all of the needed information, and he invited the Committee’s advice on this matter. For the Chronic Care Improvement Program, a contractor is doing addi­tional targeted data collection. He added that compliance with the HIPAA privacy rule adds to the challenges of data collection. The group further discussed quality data col­lection issues, the need to continue to improve outcome measures, and the related need for data on the most effective interventions.

Dr. McClellan welcomed Dr. Steuerle’s invitation to use NCVHS mechanisms to facilitate structured public discussion of possible alternative incentives.

REPORTS FROM SUBCOMMITTEES AND WORKGROUPS

Executive Subcommittee— Dr. Lumpkin

The Subcommittee will hold its annual retreat on August 6 in Princeton, NJ, to discuss the functions and working of the Committee, coordinate activities, and plan for the com­ing year.

Subcommittee on Standards and Security— Dr. Cohn

Dr. Cohn reviewed the Subcommittee’s busy meeting schedule. Mr. Blair then briefed the group on the Subcommittee’s plans for its work on e-pre­scribing standards. Drawing on a number of resources, later this summer it will compile all standards in use, the gaps and limitations, and recommendations. It will send them to the SDOs, terminology developers and identifier developers and ask how quickly they can address the gaps. Based on this guidance, they will develop a document for full Committee review that identifies the standards CMS could use for dem­onstration projects, as well as those needing additional time for improvements.

Dr. Cohn noted the variations in current e-prescribing practices and the importance of moving toward interoperability through a standards-based approach in order to realize its poten­tial to improve patient safety.

Mr. Reynolds commented on the differences between this environment, which requires individual prescriber participation, and the HIPAA process, which largely involves institutions working together. This effort must be “validated from the ground up.”

Dr. Lumpkin asked the Subcommittee and other NCVHS members to be prepared to take action on this effort at the September meeting.

Subcommittee on Privacy and Confidentiality—Mr. Houston

The Subcommittee will hold a hearing on July 14-15 on disclosure to the press and use of personal health information in marketing and fundraising. It will also be briefed on the secu­rity rule.

Dr. Lumpkin encouraged the Subcommittee to look into off-shore movement of information, when possible. Mr. Houston said it hopes to do that in the Fall. In addition, it is thinking of taking testimony in September on medical devices.

Subcommittee on Populations— Mr. Localio

Mr. Localio gave an overview of changes made by the Subcommittee to the document on race/ethnicity data that was discussed the previous day. He read the revised draft aloud.

Following discussion, the Committee passed a motion adopting the commentary of the Subcommittee on Populations, with the following conditions: 1) The Chair will review future editorial changes to determine whether they are substantive or purely wording.

2) The document title chosen by the Subcommittee will be re­viewed by the full Committee and, barring any objection, substituted for the current title.

Workgroup on Quality — Mr. Hungate

The Workgroup will host a hearing on June 24-25 to develop the business case for data and information collection for quality measurement. It plans to summarize the findings and present them to SDOs, vendors, providers and others at a subsequent hearing, possibly in September. The aim is for these stakeholders to assess the viability of the business case for transferring some of the previous Quality Workgroup report’s candidate recommendations to full recommendations.

The Workgroup will also be developing its workplan and talking with other NCVHS sub­groups about taking action on candidate recommendations in their domains.

Ms. Greenberg acknowledged Debbie Jackson’s service as acting lead staff for the Quality Workgroup in recent months, and welcomed Anna Poker of AHRQ as the new lead staff.

FUTURE AGENDAS FOR NCVHS MEETINGS—Dr. Lumpkin

After commending those who organized the several high-level briefings at the present meeting, Ms. Greenberg reviewed plans for the September NCVHS meeting. They will be finalized at the Executive Subcommittee retreat. The September meeting is expected to include fol­low-up from the NHII conference, action on e-prescribing, and an update on the CHIT strategy. Other possible topics include:

  • briefing on the process of standards development*
  • international statistics issues
  • genomics
  • GIS
  • NIH Roadmap for Research*
  • panel on socioeconomic position theory

(The topics on which members expressed the greatest interest are marked * .)

I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.

/s/

John R. Lumpkin                                             09/16/04 _____________________________________________________________________ Chair                                                                              Date

[1] see http://www.cdc.gov/futures/od_options/index.htm