Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

September 25-26, 2002

Quality Hotel
Arlington, Virginia

Meeting Minutes


The National Committee on Vital and Health Statistics was convened on September 25-26, 2002 at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:

Committee members

Absent:

Staff and liaisons

Others


EXECUTIVE SUMMARY

ACTIONS

1. Members approved a letter to the Secretary on the need for intensified outreach and education to help covered entities prepare for implementation of the Privacy Rule.

2. Members passed a motion authorizing Ms. Greenberg to compile member comments on the HHS Strategic Plan and to submit them with a cover letter from Dr. Lumpkin without further review by the Committee or Executive Subcommittee. The letter will be sent to Dr. ChannahSorah and posted on the NCVHS Web site.

UPDATE FROM THE DEPARTMENT

Mr. Scanlon announced several personnel changes in the Department, introduced and welcomed the new NIH and CMS liaisons to NCVHS, and gave status reports on the Department’s compliance with the Shelby Amendment, the National Academy of Sciences Committee on race/ethnicity data, and the new Web gateway to all HHS data and statistics. Regarding the HHS strategic plan, he called attention to the inclusion of “accelerating the development and use of the NHII” as an objective.

Mr. Campanelli, the new director of OCR, described its activities aimed at helping covered entities prepare to comply with the Privacy Rule. He invited the Committee’s suggestions on specific content needs or target audiences. Dr. Shortliffe expressed concern that the nation’s lawyers are not giving the same answers to clients’ questions about the rule.

Ms. Trudel said CMS is pushing modifications to the transactions and code sets on a fast-track, as recommended by the Subcommittee on Standards and Security, but it has published no final rules since the last NCVHS meeting. She reported that 200,000 extension requests have been received to date, and she described the outreach and education activities of CMS and its regional offices, particularly aimed at small providers.

CONSOLIDATED HEALTH INFORMATICS (CHI) UPDATE

Douglas Godesky, CMS; Gary Christopherson, VA; Robert Kolodner, MD, VA

Dr. Cohn reported that at an August 29 hearing, the Subcommittee on Standards and Security heard from CHI and non-federal consortia working to promote standards and improve interoperability in health care IT. The Subcommittee’s goal is to ensure that private and public activities converge on the same standards.

Mr. Christopherson said the common interest among CHI partners is to share health information to improve patient health, and to do so based on electronic and interoperability standards, in a secure environment, aligned with HIPAA. Federal participation includes some 20 agencies as well as about 100 subject matter experts. The DoD and VA are key partners. Currently, DoD and VA are working toward a convergence of their software applications and data standards. The Indian Health Service will join them. After discussing the goals and activities of CHI, the presenters described their interactions with other organizations at the August 29 NCVHS hearing. They concluded by suggesting ways the Committee could assist this effort.

REPORT FROM EXECUTIVE SUBCOMMITTEE RETREAT: Dr. Lumpkin

Dr. Lumpkin described the discussions and actions of the Executive Subcommittee at its daylong retreat in Chicago in July. A major theme concerned the fact that the Committee has worked extensively on issues related to sub-populations, but little on information policy issues related to population health as a whole. This topic was linked to the interest in continuing the practice of the full Committee having its own projects and work plan.

The Subcommittee took the following actions:

Discussing this report, the Committee focused on how to carry out the related goals of cross-fertilization among NCVHS subgroups, elevation of major cross-cutting topics to the full-Committee level, and heightened attention to population health. They endorsed the decision to focus on population health determinants and information sources in coming meetings, and agreed to keep CHI on the radar screen of the full Committee.

LETTER ON PRIVACY RULE IMPLEMENTATION: Mr. Rothstein

In day one of this meeting, Mr. Rothstein read a letter drafted by the Subcommittee on Privacy and Confidentiality expressing strong concern over the inadequacy of the Department’s effort to help covered entities get ready for the Privacy Rule. Members suggested edits and additions, which were integrated into a revised version of the letter that was approved on day two.

DRAFT RECOMMENDATIONS FOR CODE SETS: Dr. Cohn

For the Subcommittee on Standards and Security, Dr. Cohn brought a draft letter concerning the transition from ICD-9-CM to ICD-10-CM and ICD-10-PCS. He said the Subcommittee had struggled with the letter and recommendations, and he asked for the Committee’s guidance. (He then recused himself from the rest of the discussion.) After reviewing the draft letter and discussing some of the issues involved, the Committee agreed to defer a decision until members could be briefed on the background and major issues. The briefing will be done by Subcommittee members at the November NCVHS meeting. A background document will be provided in advance.

HHS STRATEGIC PLAN BRIEFING: Dr. Vijaya ChannahSorah, ASPE

The Government Performance and Results Act (GPRA) requires 5-year strategic plans, annual performance plans, and annual performance reports of all federal departments. The HHS strategic plan (http://aspe.hhs.gov/hhsplan/draft) has 8 goals and 40 objectives. Goal 5 is improving quality of care. Dr. ChannahSorah called particular attention to the new objective for this goal, “Accelerate the development and use of the national health information infrastructure” (#5.5), with strategies on promoting technology development, promoting the voluntary adoption of data standards, and conducting research. Discussion with the Committee centered around three themes: making sure that the strategic plan calls adequate attention to the fact that this objective enables all the goals, not just goal 5; broadening the definition of research to include informatics and health services as well as bench research; and broadening the treatment of privacy issues. The Committee took an action on these recommendations; see above.

REPORTS FROM WORKGROUPS AND SUBCOMMITTEES

(See brief accounts in full meeting summary.)


DETAILED SUMMARY

DAY ONE

CALL TO ORDER, WELCOME, INTRODUCTIONS

Dr. Lumpkin called the meeting to order and asked all present to introduce themselves. An opportunity was given for members to declare conflicts to specific agenda items, but none was declared.

UPDATE FROM THE DEPARTMENT

Data Council: Jim Scanlon, ASPE

Mr. Scanlon noted the present administration’s interest in data policy, and he predicted more progress in this area in the coming fiscal year. He announced that Dr. Bill Yasnoff has joined ASPE as a Senior Advisor for NHII issues, on detail from CDC. He will pick up on several NCVHS activities, such as PMRI standards, and is putting together a work plan and priorities with ASPE leadership. One reason for this recruitment of Dr. Yasnoff, said Mr. Scanlon, is the Committee’s NHII report and recommendations.

Mr. Scanlon is now Acting Director of the Office of Science and Data Policy and Acting Deputy Assistant Secretary for Science and Data Policy, as well as director of the data policy division.

He introduced Judith Berek, the new CMS liaison to the Committee, and Virginia Cain, the new NIH liaison. CDC has been asked to designate a liaison, and Dr. Sondik has been asked to serve as the NCHS liaison. This will give NCVHS representation from most of the major data and information policy agencies.

Regarding the HHS strategic plan (see notes on briefing in day two, below), he called attention to the inclusion of “accelerating the development and use of the NHII” as an objective. He noted other objectives with special relevance to NCVHS work and recommendations. Mr. Blair noted that he had sent a comment to HHS asterisking all the elements of the plan that would be enabled by an NHII.

On the Shelby Amendment, which makes basic federally-funded research information subject to FOIA (without identifiers), he said there have been few requests for the information, contrary to initial concerns. The final HHS information quality guidelines are to be posted on the HHS Web site on October 1, affecting the dissemination of all substantive information disseminated by HHS agencies. To comply with the requirement for a quality-oriented pre-dissemination review of material to be disseminated, an HHS workgroup developed a quality review process, which is posted on the Web site. Agencies are being encouraged to use or integrate existing processes to the extent possible.

Noting the tension between the quality control commitment and the desire for timeliness, Dr. Shortliffe commented on the need for rapid-review mechanisms for information needing urgent dissemination. Mr. Scanlon said HHS reserves for itself the authority to temporarily waive guideline provisions in such instances.

The Shelby Amendment also requires every agency to provide a mechanism for members of the public to request correction of information they believe does not meet the guidelines. HHS has standardized this process for all its agencies. Mr. Scanlon added that sometimes the Department will not disagree with a critique ¾for example, that information is two years old; but the limitation in this example, among others, is dictated by resource constraints.

Updating the Committee on the National Academy of Sciences (NAS) study of the adequacy of race and ethnicity data in health and human services, Mr. Scanlon said the NAS committee, of which Dr. Lumpkin is a member, is planning a workshop to examine private sector practices and policies. He invited suggestions for presenters. Finally, he announced that HHS would soon unveil its Web gateway to all HHS data and statistics. It will link to the Web sites of all HHS agencies and states, and it will be searchable. The gateway has been in development for 18 months.

Privacy Regulation: Richard Campanelli, OCR

Mr. Campanelli is the new director of the HHS Office of Civil Rights. He acknowledged the work of NCVHS and especially the Privacy Subcommittee, saying the Department values their input. OCR is focused on public education and voluntary compliance. The final modifications to the privacy rule issued on August 14 reflected many NCVHS recommendations. The hope and expectation is that the rule protects individual rights without erecting new barriers to health care.

The OCR is issuing FAQs on the Web site (www.hhs.gov/ocr/hipaa) along with updated privacy rule guidance. Both will be updated periodically. OCR invites input from NCVHS on what areas need to be addressed in its education efforts. A flowchart also will also issued, entitled, “Who Is a Covered Entity?” The Web site also has a factsheet on the modifications, a sample contract, and other documents. Other targeted technical assistance documents are under development, e.g., for consumers, hospitals, and state and local agencies. OCR is also engaged in outreach, working with states on how best to reach states and local governments, and it is training privacy specialists in each HHS region. He invited the Committee’s suggestions on specific content needs or target audiences.

Dr. Shortliffe expressed concern that the lawyers being consulted around the U.S. by various covered entities are not giving the same answer or interpretation of the rules. Mr. Campanelli said it takes time for any new regulation to be fully understood, but he hoped the resources being disseminated by OCR would provide guidance to lawyers, too, and promote consistency. Dr. Shortliffe suggested bringing in the lawyers and educating them en masse.

To a question from Mr. Rothstein, Mr. Campanelli said there would be an integrated rule¾i.e., the original rule, edited to incorporate the modifications. It should be available soon. To another question, he told Dr. McDonald there is currently no way to get a ruling on complicated and difficult issues, as OCR is focusing its resources on general guidance and FAQs. Dr. McDonald suggested that OCR develop a chart showing what qualifies or trumps what in the rule.

Dr. Lumpkin alerted Mr. Campanelli to the likelihood of a number of waiver requests, once states complete preemption analyses. Dr. Augustine suggested a national database on privacy statutes.

Data Standards: Karen Trudel, CMS

Ms. Trudel reported that CMS has not published any final rules since the last meeting. It is pushing modifications to the transactions and code sets on a fast-track practice, as recommended by the Subcommittee on Standards and Security; the next priority is the security regulation, and the others are in the pipeline. As for extension requests, CMS has received about 200,000 requests to date, with an equal number projected by the October 15 deadline. CMS found that the people most “starved for information” about HIPAA were small providers, and its ten regional offices have done an outstanding job of getting the word out. She described some of the outreach and public education activities, including the hotline, which receives 300-400 calls a day. Responding to Dr. Shortliffe’s earlier query about consistency, she said CMS has found that one of the best ways to promote it with respect to code sets and transactions is through the Strategic National Implementation Process (SNIP).

Dr. Cohn congratulated Ms. Trudel for the good job CMS is doing to inform industry, adding that the ease of obtaining extensions is very helpful. In response, she said CMS and regional administrators are crafting an outreach strategy for FY 2003.

CONSOLIDATED HEALTH INFORMATICS (CHI) UPDATE

Douglas Godesky, CMS; Gary Christopherson, VA; Robert Kolodner, MD, VA

Dr. Cohn said NCVHS was asked to be the advisory committee to the CHI initiative, and the Subcommittee on Standards and Security has taken on the responsibility. At an August hearing, it heard from CHI and non-federal consortia working to promote standards and improve interoperability in health care IT. The Subcommittee’s goal is to ensure that private and public activities converge on the same standards. It found there are opportunities for synergy among various initiatives and widespread support for NCVHS recommendations made in 2000 and for current NCVHS priorities with respect to PMRI standards. He introduced Doug Godesky, Deputy Project Manager of CHI, who introduced Gary Christopherson and Dr. Rob Kolodner of the Department of Veterans Affairs. The VA and Department of Defense are key partners with HHS in CHI, one of 24 OMB-sponsored eGov initiatives.

Mr. Christopherson said the common interest among CHI partners is to share health information to improve patient health, and to do so based on electronic and interoperability standards, in a secure environment, aligned with HIPAA. Federal participation includes some 20 agencies as well as about 100 subject matter experts. A key element is an attempt to change the culture of medical information-sharing. This is to be done by adopting common standards among federal agencies and encouraging and attracting adoption of similar standards by other public and private entities, with the hope of creating a “tipping point” to catalyze the widespread adoption of common information standards. He noted that the VA buys about $1 billion a year in health care from the “outside health care world,” making common standards necessary in both the public and private sectors.

This effort, as envisioned at an October 2001 discussion sponsored by Kaiser-Permanente and IOM, is called “HealthePeople.” The “e” represents the electronic enabler of a paperless record, the goal by 2010. Once again, common data and communication standards were recognized as the key, combined with good information systems. What is needed is two to five good systems that can be adopted, plus a lot of subsystems. There must be public ownership of at least one system, a criterion that he noted is met by the current VistA system and the future HealtheVet-VistA system.

Currently, DoD and VA are working toward a convergence of their software applications and data standards. The Indian Health Service will join them. With Kaiser, there will be a convergence of standards, not software systems; and many other players are also in dialogue, including some states, hospitals, academic medicine centers, and local public health departments. Mr. Christopherson hailed the unprecedented level of cooperation between DoD and VA and described aspects of it, noting that it can serve as a model for others.

Mr. Godesky described the August 29 hearing held by the Subcommittee on Standards and Security, at which a panel of five organizations, including CHI, discussed their activities in this area. The other organizations were the eHealth Initiative, Connecting for Health sponsored by the Markle Foundation, the National Association of Health Data Organizations (NAHDO), and the National Alliance for the Health Information Technology Initiatives. He briefly described each. CHI’s observations about the other organizations were that they all involved collaborative partnerships, with some membership overlap; they seek to avoid duplication, a challenge for all; they have similar goals and similar structures; they emphasize enabling a national health care information system infrastructure and adoption of interoperable standards; the right time is now; mandates won’t work; and they are willing to help and work with CHI, and vice versa.

Dr. Kolodner summarized the questions posed to CHI during the hearing. They focused on CHI’s plans for partnering in the development and use of standards. CHI’s answers were that it plans to be a partner by participating in SDOs and coordinating with other efforts, with NCVHS help, but not by funding systems because it is focusing on standards. It views the government’s role as building the same standards into federal agency architecture, creating a tipping point as federal agencies adopt the standards, and having its members participate in other work, leading to coordination.

Concerning NCVHS assistance, CHI suggests that the Committee provide periodic guidance and feedback on its plans and directions, help identify areas needing new standards, help to market the need for the adopted standards, and partner with or be supportive of CHI and of participating federal agencies.

Dr. Cohn added that the Subcommittee also expects to analyze the interface between CHI and other efforts, and that effort is also needed toward implementing existing or emerging standards.

Dr. Zubeldia thanked the panelists and expressed confidence in their project’s potential achievements. He also cautioned against expecting, or appearing to expect, everyone to adopt the same software. Mr. Christopherson said CHI has been explicit that this is not its intention. The focus is standards, and they want to encourage software vendors to improve their own products. He noted that at this point, even though health care is the sixth largest segment of the economy, it is a cottage industry with considerable unrealized potential in the information sphere.

Asked by Mr. Blair how CHI relates to the GCPR project, Mr. Christopherson said the part of GCPR that was about information sharing between DoD and VA has evolved into the Federal Health Information Exchange, now in operation. HealthePeople Federal is taking the next step of putting standards in place, involving not just DoD and VA but the Indian Health Service. They are also working toward system interoperability. These initiatives have broad support within the administration.

Dr. Kolodner responded to a question on the Committee’s PMRI recommendations, saying DoD and VA “started with them” and they are in the process of ratifying them, with slight “tweaks,” with a 95 percent overlap between the two. If CHI endorses the NCVHS recommendations, as modified, this will represent federal-wide acceptance. Mr. Godesky added that OMB requires that CHI projects not reinvent the wheel.

REPORT FROM EXECUTIVE SUBCOMMITTEE RETREAT: Dr. Lumpkin

The Executive Subcommittee met in a day-long session in Chicago on July 26 to review recent activities and accomplishments, discuss goals and plans for the future, and set agendas for forthcoming meetings. The general objectives were integrating the Committee’s activities and priorities, evaluating its structure and operations, and enhancing its working relationship with the Department. A major theme concerned the fact that the Committee has worked extensively on issues related to sub-populations, but little on information policy issues related to population health as a whole. The Subcommittee discussed the fact that the full Committee should have its own projects and work plan, and decided that the next such project should be about population health. Its key actions on this and other matters were as follows:

In general, Dr. Lumpkin said, the Subcommittee wants NCVHS to continue to advise on HIPAA while moving beyond micro-level data issues to other priorities related to population health.

Dr. Cohn emphasized the idea of the full Committee having issues and projects, and he asked fellow members if they wanted to continue to keep track of CHI at the full-Committee level. Dr. Shortliffe supported the idea, observing that CHI’s work is about more than standards, and Ms. Greenberg said it belongs on the full Committee’s radar because the group is working to enhance population health using standards and interoperability.

Members suggested using full Committee time for more macro-level presentations of issues and, when appropriate, including a briefing on why a given subject is important and what the key issues are. Dr. Mays suggested developing procedures or policies for deciding what discussions belong at the full-Committee level.

Dr. Lumpkin, noting that September agendas tend to be lighter than for other meetings, suggested using this meeting every year for briefings by each subcommittee and workgroup on what issues they are struggling with, major activities of the past year, and anticipated issues. Dr. Mays noted that this could be an occasion to identify any need for ad hoc inter-subcommittee groups.

In response to a query from Ms. Greenberg, members said they supported the Executive Subcommittee’s plan to have a series of meetings on population health issues. The first session may be in February.

DRAFT PRIVACY LETTER: Mr. Rothstein

Mr. Rothstein said that after the first of three planned hearings on implementation of the HHS Privacy Rule, the Subcommittee on Privacy and Confidentiality was sufficiently concerned about the distress and poor state of readiness in the industry that it decided to write an interim letter to the Secretary immediately, in view of the shortness of time, rather than waiting until the series was complete. The first hearing, held on September 10-11, revealed intense and pervasive confusion and frustration, and also that the scale of the Department’s efforts do not match the scale of the problem. A follow-up letter will be sent once the hearings are completed.

He read the draft letter aloud, after which Dr. Harding explained that the impression Subcommittee members got from the hearing was that people’s concern, partly because of scare tactics by consultants, is that “this is kind of like Y2K, except instead of your computer crashing, you’re going to go to jail.” Mr. Rothstein added that providers don’t know where to turn to move toward compliance.

Mr. Scanlon suggested that the Committee’s letter address not just the Secretary but industry leadership and professional associations and call on the industry to take a more proactive role. Dr. Lumpkin said the letter could recommend that OCR work with industry organizations, thus expanding their reach. Dr. Zubeldia stressed that besides outreach to providers, a massive public education campaign is needed, and this point should be prominent in the letter. If the public gets the message, they will take it to their providers. In general, Mr. Scanlon suggested looking for strategies with a multiplier effect.

Members supported the tone and emphasis of the letter and suggested a few other edits and possible strategies, to be worked into a revised version that will be brought back for action on day two.

Dr. McDonald questioned whether the necessary steps are even possible in the limited time frame, and whether there is a “Plan B.” Members agreed to defer that discussion, if still needed, until closer to the implementation date. They discussed issues related to possible phased enforcement, legal exposure, and the potential impact on large versus small organizations. Mr. Rothstein said the Subcommittee plans to go into greater detail in its November letter regarding possible steps.

DRAFT RECOMMENDATIONS FOR CODE SETS: Dr. Cohn

Dr. Cohn said he would be recusing himself from discussion of the letter on replacing ICD-9-CM with ICD-10-CM and ICD-10-PCS because it addresses CPT-4. By way of general background, he said the draft being presented to the Committee is the 12th iteration of this letter. Although Subcommittee members are close to agreement on the current draft, they wanted to seek the Committee’s input and guidance. The ICD-10-PCS recommendations are especially controversial. The Subcommittee has held three major hearings on code set issues, with additional sessions to take further testimony. Dr. Cohn asked the Committee to consider, among other things, whether there are other issues that should be addressed in the letter and whether its tone is right. Noting the complexity and far-reaching ramifications of the decisions about ICD-10, he asked whether this issue merits wider investigation by the full Committee before it takes action.

Dr. Zubeldia then read the draft letter aloud. Following that, in response to a question, Mr. Scanlon confirmed that replacing ICD-9-CM with ICD-10-CM and ICD-10-PCS would require a regulatory process. Mr. Augustine explained that there is consensus on the Subcommittee that Vols. 1 and 2 of ICD-9-CM need to be replaced, and that the process in that direction should get started. Volume 3 is more contentious, and the idea behind using an NPRM was that it was a way to solicit cost/benefit analysis and broad input from stakeholders. Mr. Scanlon said a cost/benefit analysis could be undertaken without launching an NPRM process.

Dr. Lumpkin asked members, especially those not on the Subcommittee on Standards and Security, whether they felt the need of a fuller discussion of all the issues involved before taking action¾for example, through presentations at the November meeting on the pros and cons of the more controversial aspects. Several members said they would like further briefing before making a decision. In response to a question, Dr. Cohn said he was aware of no major negative impact from delaying action. Members supported suggestions that the Committee be briefed by members of the Standards Subcommittee and that a short written background piece be provided in advance.

From the audience, Cynthia Malina of Alternative Link expressed concern that the letter makes no reference to ABC codes for alternative medicine, nursing and other integrated health care practices. Dr. Zubeldia said this letter is specific to the ICD-9-to-ICD-10 transition, and the Subcommittee would continue to work on other code sets according to a work plan to be determined by the end of the current meeting.

The full Committee then recessed to reconvene in subcommittee and work group sessions.


DAY TWO

HHS STRATEGIC PLAN BRIEFING: Dr. Vijaya ChannahSorah, ASPE

Dr. ChannahSorah explained that the Government Performance and Results Act (GPRA) requires 5-year strategic plans, annual performance plans, and annual performance reports of all federal departments. The HHS strategic plan (http://aspe.hhs.gov/hhsplan/draft) has 8 goals and 40 objectives. The first, concerning preventive health care and reducing the major threats to health, is a priority of Secretary Thompson. Other goals include enhancing the ability of the health care system to respond to bioterrorism and other public health challenges (#2), increasing access to care (#3), and improving quality of care (#5). The eighth goal is improving management excellence, with the idea of consolidation and coordination among HHS entities as a large piece. Research and data analysis are important parts of the strategic plan, and she invited the Committee’s suggestions for new research topics related to specific objectives as well as comments on other aspects of the plan. She gave examples of the objectives and strategies (i.e., action steps) for various goals, noting that Mr. Scanlon was a participant in the planning process and wrote parts of the strategic plan.

Dr. Shortliffe asked whether the report states its definition of biomedical science, commenting that some HHS reports use too narrow a definition. He was encouraged to send Dr. ChannahSorah his comments on the language used.

She called particular attention to the new objective for Goal 5, “Accelerate the development and use of the national health information infrastructure” (#5.5), with strategies on promoting technology development, promoting the voluntary adoption of data standards, and conducting research. Responding to a question from Mr. Blair, she said they chose to include this objective as part of a specific programmatic goal rather than the management goal to give it greater prominence and substance. She agreed that the NHII enables all the goals, a point that might be made through cross-references in the discussion of other goals. She stressed the significance of having the NHII as an objective, which is a high level in the strategic planning hierarchy. She welcomed suggestions for ways to make it clear how important and cross-cutting this objective is. She promised to e-mail to the Committee the text of the chapter on Goal 5.

Mr. Rothstein expressed concern that privacy is only discussed in the Appendix under data challenges, reflecting a narrow conception of privacy when it is in fact a central aspect of the health care system. He proposed putting it instead in Goal 5, and Dr. ChannahSorah said she would discuss this with Mr. Scanlon and Mr. Fanning. Mr. Blair suggested finding a way to represent the entire strategic plan in three dimensions rather than two, with enablers, facilitators and infrastructure being the third dimension.

Asked by Dr. Mays if the research recommendations are attached to budget requests or planning, Dr. ChannahSorah said the strategic plan is not a budget request in that it does not commit resources; however, the implication is that resources will be required to carry out the strategies for Departmental priorities. Dr. Mays encouraged the Committee to send comments on the plan as a group, and Dr. ChannahSorah stressed that she would need to receive them promptly.

Dr. Ortiz from AHRQ called attention to the need to broaden the plan’s definition of research to include not just bench research but also health services and informatics research. Dr. Shortliffe commented that research should be added as an explicit strategy for accelerating the development and use of the NHII.

Members were asked to send their individual comments, with a brief rationale, to Ms. Greenberg, whose office will compile and submit them with a cover letter from Dr. Lumpkin. Members passed a motion authorizing the development and submission of these documents to Dr. ChannahSorah without further review by the Committee or Executive Subcommittee. The letter also will be posted on the NCVHS Web site.

Ms. Coltin asked that the cover letter also encourage a review of payment policies with respect to the support or barriers they pose for the objectives.

REPORTS FROM WORKGROUPS AND SUBCOMMITTEES

Workgroup on Quality: Ms. Coltin

At a meeting earlier this day, the Workgroup worked on draft recommendations to AHRQ on the proposed measures and framework for the National Health Care Quality Report, for action at the November full Committee meeting. In addition, the group reviewed a list of common issues and themes heard during testimony in the multi-year series of panels on quality issues. The issues and themes will be synthesized, prioritized, and related to recommendations to be reviewed by the Workgroup in November. The Workgroup’s report on data issues in quality measurement will be presented to the full Committee in February 2003.

Subcommittee on Privacy and Confidentiality: Mr. Rothstein

The Subcommittee approved an amended version of the letter it presented to the Committee on day one of this meeting. Mr. Rothstein read the revised and new text in the letter. After suggesting a few slight modifications, the Committee voted to approve and send the letter, as amended.

Mr. Rothstein reminded members that the Subcommittee will hold two more hearings, in late October and early November, and will have another more specific letter for the Committee to review at its November meeting.

Health Statistics for the 21st Century: Dr. Friedman

The authors of the NCVHS report, Shaping a Health Statistics Vision for the 21st Century (Dr. Friedman, Mr. Hunter, and Dr. Parrish), and Ms. Kanaan are completing an executive summary and a policy maker’s summary for the report. In addition, the authors are doing the final wrap-up on the report itself. When these processes are finished, the report and NCVHS recommendations will be presented to the Data Council. The next step will be to forge a new work plan for the Workgroup.

For the Committee, Dr. Lumpkin expressed appreciation to Dr. Friedman for his work on this project. Dr. Friedman extended it to Dr. Parrish, who is now retired and contributing his time as a volunteer.

Workgroup on the NHII: Dr. Lumpkin

At its September 25 meeting, the Workgroup identified four cross-cutting items not being addressed by other workgroups or subcommittees on which it will hold hearings. The first hearing will address NEDSS, bioterrorism, and syndromic surveillance. The second will consider future directions of the NHII, e.g., the Next Generation Internet, looking at where development is headed and what kind of input is needed to ensure that the new technology takes into account the special concerns related to health. The other items on which hearings will be held relate to registries, especially issues of compatibility and consistent standards, and personal health records, the latter with expected input from the Markle Foundation.

In response to a comment from Dr. Ortiz, Dr. Lumpkin said the Committee often uses hearings to encourage people in different sectors, organizations or branches of government to work together¾for example, people working on the NHII and people from other departments working on the National Information Infrastructure.

Subcommittee on Standards and Security

Mr. Blair reported that the Subcommittee would meet on October 22 to focus on PMRI terminologies. Regarding the ABC codes mentioned earlier in this meeting, he said the Subcommittee is awaiting information from the HCPCS Panel in December and is considering holding hearings on additional code sets after that.

Mr. Augustine reported with regard to ASCA that the Subcommittee is updating its sampling plan and will confer with CMS staff on how to look at the data.

On ICD-10, Ms. Greenberg reported that the Subcommittee agreed to develop a background paper for the Committee prior to its November meeting, focusing on the pros and cons and issues on replacing ICD-9-CM Vols. 1, 2 and 3 with newer code sets. The Department will meanwhile be working on a complementary cost/benefit and impact analysis. Also, the Subcommittee is considering a presentation at its October meeting on Rx Norm and on broader issues related to standard nomenclature for pharmaceuticals and medications.

From the audience, Ms. Malina called attention to a “potential controversy” related to the code set for alternative and complementary medicine and nursing, on the one hand, and one being developed by the American Medical Association, on the other. In what she called a “predatory action,” she stated that the AMA is “trying to recreate from scratch a code set that already exists” and was submitted to DSMOs three years ago. She expressed strong concern about the delay in considering the alternative and complementary medicine code set.

Subcommittee on Populations: Dr. Mays

The Subcommittee will hold hearings in Denver on September 27, focusing on data issues for American Indians and Alaskan Natives. On November 8, in Philadelphia, they will look at data collection issues for racial and ethnic minorities with respect to determining health disparities at the state level. Both hearings are piggy-backing on other large meetings that are expected to enhance attendance and participation at the NCVHS events. At its breakout during the current meeting, the Subcommittee heard from Jim Weed, Deputy Director for Vital Statistics at NCHS/CDC, on vital statistics and state issues, providing background for the next hearing. The Subcommittee will hold another hearing on health disparities and data issues related to Asians and Pacific Islanders. In October, Dr. Mays will give a presentation to the IOM Committee described above about the Subcommittee’s recent findings as they bear on the IOM Committee’s final report.

The Populations Subcommittee wants to encourage the Committee to begin implementing the Executive Subcommittee’s July decision to evaluate Committee activities in terms of their impact on population health. In the same vein, it hopes to have time at the November meeting for all subcommittee and workgroup chairs and lead staff (i.e., the Executive Subcommittee) to work through crosscutting issues that have fallen through the cracks¾e.g., race/ethnicity issues related to HIPAA. The hope is to get such things back on the agendas of other NCVHS groups.

Mr. Augustine proposed occasionally dedicating an entire NCVHS day to non-overlapping workgroup and subcommittee meetings so NCVHS members could attend any and all breakout sessions. Ms. Greenberg said that if this proves impossible because of the fullness of the full Committee agenda, it should be possible to schedule joint meetings of two subcommittees/workgroups to address specific common issues.

Finally, Dr. Mays suggested taking time at some point for every NCVHS member to describe what they are working on, to facilitate taking greater advantage of the expertise within the Committee. Ms. Greenberg suggested the possibility of a retreat for the entire Committee, and she encouraged members to attend Committee dinners as a way of getting better acquainted. On another subject, she hailed the fact that several of the plans and goals identified in Executive Subcommittee retreats in recent years are starting to come to fruition.

FUTURE AGENDAS FOR NCVHS MEETINGS

The Committee identified these agenda items for the November meeting:

Dr. Lumpkin then adjourned the meeting.


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

/s/

John R. Lumpkin, M.D. 12/13/02

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Chair Date