Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

February 20-21, 2008

Hilton Garden Inn Hotel
Washington, D.C.

Meeting Minutes

 

The National Committee on Vital and Health Statistics was convened on February 20-21, 2008, at the Hilton Garden Inn Hotel in Washington, D.C. The meeting was open to the public. Present:


Committee members

Simon P. Cohn, M.D., M.P.H., Chair

Jeffrey Blair, M.B.A.

Justine M.Carr, M.D.

Leslie Pickering Francis, J.D., Ph.D.

Larry A. Green, M.D.

John P. Houston, J.D.

Carol J. McCall, F.S.A., M.A.A.A.

J. Marc Overhage, M.D., Ph.D.

Harry Reynolds

Mark A. Rothstein, J.D.

William J. Scanlon, Ph.D.

Donald M. Steinwachs, Ph.D.

C. Eugene Steuerle, Ph.D.

Paul Tang, M.D. (by phone)

Judith Warren, Ph.D., R.N. (by phone)

Absent: Garland Land, M.P.H.

Kevin C. Vigilante, M.D., M.P.H.

 

Lead Staff and liaisons

Marjorie Greenberg, NCHS/CDC, Executive Secretary

James Scanlon, ASPE, Executive Staff Director

Debbie Jackson, NCHS

 

 

Jorge Ferrer, M.D., VA liaison

J. Michael Fitzmaurice, Ph.D., AHRQ liaison

Jim Lepkowski, Ph.D., NCHS BSC liaison

Steve Steindel, Ph.D., CDC liaison

Karen Trudel, CMS liaison

 

Others

Maya Bernstein, ASPE

Katherine Jones, NCHS

Marietta Squire, NCHS

Allison Viola, AHIMA

Sheilah Dwyer, AOA

Mary Beth Farquhar, AHRQ

Kirstin Dawson, AHIP

Miryam Granthon, OMH

Dan Rode, AHIMA

Adam Bimbaum, BCBS Assn.

Linda Kloss, AHIMA

David Connolly, Capitol Assoc.

Nancy Ferris, 1105 Government Information Group

Celia Grobell, ASPE

Frank Kyle, Amer. Dental Assn.

Michael DeCarlo, BCBS Assn.

 

The transcript of this meeting and speakers’ slides are posted on the NCVHS Web site, http://ncvhs.roseliassociates.com. Use the meeting date to locate them. For final versions of NCVHS documents approved at the meeting, see “Reports and Recommendations.”

 

EXECUTIVE SUMMARY

 

ACTIONS

  1. By a vote of 13-1, the Committee approved a letter to the Secretary on individual control of sensitive information in the electronic health record for purposes of treatment, subject to wordsmithing and final approval by the Executive Subcommittee.
  2. By a unanimous vote, the Committee approved an internal document on NCVHS process and operations, authorizing the Executive Subcommittee to develop and approve the final version.

 

HIGHLIGHTS FROM THE EXECUTIVE SUBCOMMITTEE STRATEGY SESSION

 

Dr. Carr and Mr. Reynolds led a discussion of NCVHS 2008: Reflections and Questions for Discussion, which they had prepared for the Executive Subcommittee retreat. It is organized around three questions:

1) Where have we been?

2) Where should we be going?

3) How should we organize ourselves to get there?

 

Following are major points made in the discussion of these questions:

  • The need for priority-setting mechanisms;
  • The need to balance the Committee’s portfolio among its various roles;
  • The likelihood that the Committee should continue, as appropriate, to use both its standing subcommittees and ad hoc workgroups;
  • The significant role of values questions, especially in the emerging issues on the Committee’s agenda;
  • The notion that the Committee’s mission is to help the nation have the data it needs to generate information on the health of individuals and populations, and on how to get value out of the health care system, to produce a healthier population.

 

Dr. Cohn said the Executive Subcommittee would consider the perspectives raised in this discussion and bring back further discussion topics for the May meeting.

 

PRIVACY LETTER ON SENSITIVE INFORMATION IN THE EHR

 

For the Subcommittee on Privacy and Confidentiality, Mr. Rothstein and Ms. Bernstein led the Committee in reviewing this draft letter. Following long discussions of two issues and a few suggested minor modifications, the Committee passed a motion, by a vote of 13-1, to approve the letter, subject to wordsmithing and final approval by the Executive Subcommittee. The dissenting member was invited to provide a statement for attachment to the letter.

 

DEPARTMENT UPDATE

Data Council—Mr. Scanlon

Mr. Scanlon reported that in the FY08 budget, NCHS received an increase that will go to funding national surveys. The FY09 budget, too, contains good news for population data, with full funding for several key surveys; and the ONC budget will have a slight increase. In both years, other funding will hold steady at earlier levels. He also described several Data Council projects.

 

CMS/HIPAA—Ms. Trudel

Ms. Trudel reported briefly on e-prescribing, pilot testing of three proposed standards, the NPI, HIPAA 5010, a review of CMS operations, HIPAA security, and the PHR pilot project.

 

ONC—Dr. Loonsk (see slides)

Dr. Loonsk described the process for standards in the national health IT agenda. Certification will embody the standards, with interoperability as a central feature. The certification process is “going great guns,” he said. He advised looking at the second and third years of the process in terms of impact. Regarding the NHIN, ONC is trying to accelerate the appropriate exchange of data by identifying common standards, developing data sharing agreements and policies, ensuring the implementation of standards and agreements, and encouraging demand for using standards and connecting. It is embracing different models of participation and encouraging market competition. NHIN trial implementations are an important intermediate step. Finally, ONC is developing specifications in coordination with HITSP. Dr. Loonsk said that ONC would soon release its strategic plan.

 

COMMITTEE OPERATIONS AND PROCESSES DOCUMENT

 

Members reviewed an internal document on NCVHS operations and processes, with many expressing appreciation for the guidance it provides. They offered suggestions that broaden its scope, and considered several uses of the document. They then unanimously approved it, authorizing the Executive Subcommittee to refine and give it final approval and agreeing that it should periodically be revisited and revised as needed.

 

SUBCOMMITTEE AND WORKGROUP UPDATES

 

Please see the brief summaries of subcommittee and workgroup reports in the next section.

 

In the context of the Population Subcommittee and Quality Workgroup updates, the group discussed the synergies among many topics on the NCVHS agenda, including medical home, the health statistics vision, information for health care reform, issues raised in the report on data uses, and plans to revisit the 2004 recommendations on quality. The developments related to terminologies and classifications were later added to this list. Ms. Greenberg suggested that the health statistics vision update process could provide a coordinating mechanism, and the work product could be featured in the Committee’s forthcoming 60th anniversary observance. Members welcomed this framework for planning and noted the potential for the 60th anniversary to be a transformative event. Dr. Cohn said the Executive Subcommittee would develop a proposal, based on these discussions.

 

ICD-10 AND ICD-11 UPDATES—Christopher Chute, MD, DrPH, Mayo Clinic (see slides)

 

Dr. Chute chairs the ICD-11 Revision Steering Group of the World Health Organization (WHO). He said ICD-11 is intended for multiple use cases: morbidity and mortality public health reporting first and foremost; scientific consensus on high-level clinical phenotypes; patient data characterization for clinical and research applications; and primary care. The goals for the revision include evolving an ontologically coherent classification that links logically to underpinning terminologies, making human language definitions explicit, and maintaining longitudinal consistency through linear derivatives. The classification is part of a much larger structure in the WHO Family of International Classifications (WHO FIC). Using aggregation logic, ICD-11 will begin to accommodate the emerging understanding of the genomic underpinnings, manifestation and etiology of many diseases. It will move beyond ICD-10 by allowing for cross-relationships, linkages, and “arcing” among concepts, while retaining the look and usability of the traditional, hierarchical ICD. Among many other requirements, it will integrate with existing terminologies.

 

A consortium of open-source distributed authors is contributing to common tooling, involving the Mayo Clinic’s Division of Biomedical Informatics, Apelon, the National Cancer Institute, and Stanford. The Wiki environment will be used in the creative process, linked to semantic Web technology to create a “semantic Wiki” that Dr. Chute called “the best of both worlds.” The coordinators are assuring that the process takes place within a formal framework and has ontological consistency.

 

Finally, Dr. Chute discussed the formalized associations with the International Health Terminology standards development organization and the developmental trajectory potentially linking SNOMED and ICD-11. Although no agreements have been reached, International Health Terminology Standards Development Organization and WHO representatives are in discussions about mutually beneficial forms of cooperation.

 

In the discussion period, NCVHS members expressed enthusiasm for the ICD-11 activities and discussed a number of questions with Dr. Chute. To learn more about ICD mapping efforts in the U.S., they agreed to request a briefing from Betsy Humphreys of the NLM.

 

AHIMA/AMIA BRIEFING—Linda Kloss, AHIMA, and Dr. Keith Campbell, AMIA (slides)

 

This joint AHIMA/AMIA project is intended, in the words of Ms. Kloss, “to get [the U.S.] house in order, to be ready for the kind of world we just were discussing.” In 2006, AHIMA and AMIA created an expert panel to wrestle with how to do this, releasing a white paper in late 2006. The two organizations tackled the topic because terminologies and classifications are the language infrastructure for the NHIN; the U.S. lacks a vision and strategy for their coordinated development, maintenance and use; and standards harmonization alone will not solve the problem. The white paper acknowledges recent progress but asserts that not enough has been done to solve U.S.-specific infrastructure issues. It puts forth a vision of the desired state, based partly on lessons from other countries, and identifies critical short-term actions.

 

Dr. Campbell said the 13 members of the task force were in agreement about the need to develop a funded organization, responsible for setting policy and shepherding work products. The task force’s fundamental message is that the U.S. needs a central organization to create a national strategy, thus making it possible to migrate away from unfunded activities that are dependent on a few organizations. The activity in this country must mesh with those in other countries and must leverage the activities of the IHTSDO and the WHO FIC; and the process must be transparent. The task force envisions a collaborative effort, coordinated by the central policy body, toward the adoption of models and standard terminologies. The goal is a longitudinal, cradle-to-grave EHR. The vision is for a standard set of detailed clinical models, coupled with standard coded terminology; standard APIs; and open sharing of models, coded terms and APIs. The AMIA/AHIMA task force made three recommendations, each with multiple action steps:

1)      Do more formal R&D, with public funding;

2)      Fund a centralized terminology authority, coordinated with AHIC’s successor; and

3)      Commit to adoption of sound principles of terminology development, with appropriate incentives.

 

Discussion with NCVHS members focused on how the Committee can help. Noting that these issues are central to the NCVHS mission, Ms. Kloss suggested that helping to bring about a consensus on the U.S. solution should be added to the Committee’s critical planning agenda.

 

DETAILED SUMMARY

—DAY ONE—

CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA

 

Following introductions, Dr. Cohn commented on the positive and productive year just passed. He noted that 2008 began with an Executive Subcommittee retreat, which generated ideas that will be discussed at this meeting. He thanked NCVHS members for their hard work and staff, notably Ms. Greenberg and Mr. Scanlon, for their dedicated leadership and support. After reviewing the agenda, he introduced Dr. Carr and Mr. Reynolds for a discussion of a document they prepared for the Executive Subcommittee retreat, NCVHS 2008: Reflections and Questions for Discussion.

 

HIGHLIGHTS FROM THE EXECUTIVE SUBCOMMITTEE STRATEGY SESSION

 

The Carr/Reynolds discussion document is organized around three questions:

1) Where have we been?

2) Where should we be going?

3) How should we organize ourselves to get there?

 

Dr. Carr began with history, noting that NCVHS would be 60 years old in 2009. She reviewed the Committee’s major areas of activity and observed that something major happens every few years that fosters significant developments. The Committee has been highly productive, producing 99 letters and reports from 1997 to the present. Regarding question 2 above, she pointed to the continuing relevance of the core values and guiding principles laid out in the NCVHS Vision for 21st century health statistics. She noted the need for processes for setting priorities among the competing claims on the Committee’s attention, to maximize its effectiveness.

 

Mr. Reynolds commented on the importance, in a changing landscape, of balancing the NCVHS portfolio among its roles of ongoing oversight, collaboration, addressing emerging issues, and visioning the future. On question 3, he raised a number of considerations related to the configuration of NCVHS, contrasting the ad hoc workgroup model and the traditional use of standing subcommittees, and noting the possibility of combining the two approaches. Other questions concern how the Committee manages requests for its service, which come from multiple sources, and how it can stay at the right level of consideration in the issues it addresses. He also called attention to the expectations for member participation, and the need to preserve continuity within NCVHS in leadership and to orient new members. Finally, he pointed to questions about writing, polishing, reviewing, designing and disseminating NCVHS letters and reports. He then invited comments from fellow members.

 

Discussion

 

Several members commented on interactions among the Committee’s charge, the issues it addresses, and the process it uses. Mr. Houston noted that part of the charge is “to decide what are emerging issues before they emerge.” He also urged that NCVHS adopt a more efficient and timely process for adjudicating letters. Dr. Francis observed that the Committee has shifted its focus over the years from disease patterns, care delivery and health outcomes to information management; she added that both focuses are critical. Dr. Scanlon commented that some NCVHS deliberations are based more on evidence, and others more on values; when values are involved, the question is how to introduce them into the discussion and raise them to the level of the Secretary so he/she can decide. Taking up this idea, other members noted that emerging issues are more likely not only to be cross-cutting but also to have a major values component. This has process and capacity implications for NCVHS. The importance of having a balanced portfolio and of recognizing that NCVHS has multiple customers was reiterated.

 

Regarding process, Ms. Greenberg reminded members that compared to many other groups, NCVHS is exceptionally productive and effective. She noted that allowing minority opinions in documents would be a way to expedite the review process when consensus is difficult to achieve. Mr. Rothstein commented that the Committee has done a very good job of serving as a liaison between the public and the Secretary on challenging issues, basing its recommendations on both public testimony and members’ experience. The two later agreed that a hallmark of NCVHS is that it shapes its own agenda, with staff serving in supportive roles.

 

Dr. Tang proposed that the mission of the Committee is to examine how to make effective use of data to improve the health of individuals and populations. Regarding Committee structure, he asserted that standing and ad hoc subcommittees are complementary, and both should be used. Dr. Green noted that the Committee “is fundamentally about data.” He asserted that NCVHS should center its thinking on how to help the nation have the data it needs to generate information on the health of individuals and populations and on how to get value out of the health care system to produce a healthier population.

 

Dr. Cohn said the Executive Subcommittee would consider the perspectives raised in this discussion and bring back further discussion topics for the May meeting.

 

PRIVACY LETTER ON SENSITIVE INFORMATION IN THE EHR

 

For the Subcommittee on Privacy and Confidentiality, Mr. Rothstein and Ms. Bernstein led the Committee in reviewing the draft letter on sensitive information in the electronic health record. It has been “substantially rewritten” since it was discussed at the November full Committee meeting. All members received it in advance of this meeting, and several had already commented by email.

 

At the outset, Dr. Overhage stimulated a lengthy discussion by questioning the underlying assumption (which in his view lacks an adequate evidence base) that individuals have a right, and a desire, to control their sensitive information for purposes of treatment. He recommended that the Committee “focus on determining the desirability, rather than proposing a solution to a presumed problem.” He called attention to the multiple costs of implementing the recommendations, and noted the importance of counseling individuals about the implications of a decision to sequester their personal health information.

 

Mr. Rothstein and Ms. Bernstein explained that the Subcommittee felt urgency about making a policy recommendation at this time because developers and networks are moving ahead rapidly, and the longer attention to these issues is delayed, the more difficult and costly it will be to address them. The idea is to build controls into health information exchange mechanisms and practices from the outset. Moreover, many of the recommendations to the Secretary call for study, research and evaluation prior to devising specific approaches. Mr. Rothstein also reviewed the extent of the Subcommittee’s consultative and deliberative process in developing its recommendations, including six hearings across the U.S. and 15 months of deliberation, much of it involving the full Committee. Mr. Reynolds added that they had heard from many individuals “who truly worry about their data and how it would be used.”

 

Other members expressed their belief that the Committee had adequately established the need for the recommended measures. It was noted that ONC is now saying that individuals should have some level of control over their records, and there is considerable interest in this issue. The NCVHS letter is intended to serve as a focal point to draw attention to these concerns and move public discussion toward determining how to address the concerns in the evolving NHIN. Mr. Houston asserted that controls like the ones proposed are in fact a necessary precondition for the success of the NHIN.

 

The group agreed to add language to the beginning of the letter, drawing on the foregoing discussion, to contextualize it. They then considered each of the sections of the proposed letter, making a few minor modifications. The Committee then passed a motion, by a vote of 13-1, to approve the letter, subject to wordsmithing and final approval by the Executive Subcommittee. Dr. Overhage was invited to provide a dissenting statement to be attached to the letter.

 

Mr. Rothstein thanked NCVHS members, and in particular Subcommittee members, as well as Ms. Bernstein and other staff for their steadfastness in carrying out this challenging task.

 

DEPARTMENT UPDATE

§         Data Council—Mr. Scanlon

Mr. Scanlon focused on developments in the past three months. The Department now has a budget for the current fiscal year. Although it is “fairly flat,” including in support for HIT, NCHS received an increase, which will go to funding national surveys. The FY09 budget also contains good news for population data, with full funding for several key surveys; and the ONC budget will have a slight increase. Other funding will hold steady at earlier levels. The Data Council will be looking at the impact of the NCHS increase on major data systems.

 

Regarding legislative developments, HIT is expected to be a priority in the current session of Congress.

 

The Data Council is expanding a hospital-focused survey on emergency preparedness and pandemic preparedness. It is also evaluating the electronic PHR demo for the Medicare fee-for-service program, working with CMS, and is assessing EHRs and information exchange in community health centers. It recently completed a study of the HIT workforce. It has been studying the capabilities of current EHRs for public health statistics and data and plans some demos and pilot studies in this area.

 

§         CMS/HIPAA—Ms. Trudel

 

The e-prescribing rule is under review and will be published soon. CMS is starting to move forward with pilot testing on the three proposed standards that have not been adopted—RX Norm, structured and codified sig, and prior authorization. CMS and DEA have testified to the Senate on issues related to e-prescribing for controlled substances.

 

On the NPI, with May 23 as the final compliance date, the compliance rate is near 100 percent and reject rates are steady and low; thus it is deemed a success, although there is anecdotal information that some people will not be ready. CMS is working on a proposed rule related to HIPAA 5010, and there is a lot of discussion in the Department about ICD-10. AHIMA has begun a review of internal CMS operations, under contract. Regarding HIPAA security, the CMS contractor, PricewaterhouseCoopers, has conducted the first compliance review, and there will be more in this fiscal year. The checklist being used for the audits is posted on the CMS Website.

 

Finally, the PHR pilot project will roll out in South Carolina in March. The questions being evaluated are how Medicare beneficiaries use PHRs, what they find useful, how well the PHRs work, and what needs improvement. CMS will also look at outreach mechanisms.

 

§         ONC—Dr. Loonsk (see slides)

 

Dr. Loonsk began by describing the process for standards in the national health IT agenda, which starts with AHIC use cases and ends (after a year waiting period following acceptance) when the Secretary “recognizes” interoperability standards. They are then fed into a number of activities for consideration. Certification will embody the standards, with interoperability as a central feature. The Secretary accepted the second round of standards in January 2008 and will recognize them in January, 2009. The Department is moving beyond the issue of the availability of harmonized standards to how fast they can be taken up in systems.

 

Certification is another core component of the national agenda. Stark and anti-kickback relief, which appear to be working, are predicated on the fact that donated systems are certified or interoperable. The certification process is “going great guns,” according to Dr. Loonsk, and is now in the second round of ambulatory EHR certification. He advised looking at the second and third years of the process in terms of impact. Certification has a three-year duration, and new software has to be recertified.

 

Asked how the process interfaces with proprietary homegrown systems already in existence, and why they would want to be certified, Dr. Loonsk said certification is the easiest way to assure interoperability. He agreed with Dr. Overhage that being certified as potentially interoperable does not assure that the implementation is interoperable —adding that this concern is relevant to security and functionality, as well. ONC has been funding the NIST to help develop infrastructure for testing systems. He agreed with another questioner that it is time to start thinking about the need for accreditation.

 

Turning to the NHIN, he said the focus is on mobilizing health information and using it for multiple purposes. He stressed that there are multiple models for health information exchange, although the business model for that activity has been a challenge. ONC is trying to accelerate the appropriate exchange of data by identifying common standards, developing data sharing agreements and policies, ensuring the implementation of standards and agreements, and encouraging demand for using standards and connecting. They are also embracing different models of participation, and encouraging market competition.

 

NHIN trial implementations are an important intermediate step. Using test data, the trials are asked to focus on delivering data, looking up and retrieving data, exchanging consumer access permissions, and supporting the delivery of data for population uses. They also are asked to implement two use cases each. Queried by Mr. Rothstein, Dr. Loonsk said it is not in the scope of the NHIN contracts to evaluate the effect of the summary record on clinical care.

 

Finally, ONC is developing specifications in coordination with HITSP, which he described as a “multi-body collision” because of its more than 300 members. ONC is also working with nine geographic HIEs and Federal participants. He announced new mini-grants for participating in testing and demonstration, intended to bring new people to the table.

 

NCVHS members had questions about trust with respect to information sharing in networks, and about the ONC response to the recent IOM letter report assessing its performance. Dr. Loonsk asserted, and Dr. Cohn agreed, that ONC had made considerable progress in a challenging arena in recent years. He added that ONC would soon release its strategic plan, and that the next round of AHIC priorities would be around gaps.

 

—DAY TWO—

 

COMMITTEE OPERATIONS AND PROCESS DOCUMENT

 

Members reviewed draft guidelines for Committee operations and process that are proposed as “official protocol.” There were suggestions for additional language, expanding the original scope of the document. The discussion generated the following comments:

 

  • It is expected that Committee members will be timely in their comments on documents.
  • It is important to include the full Committee in the deliberative process.
  • The option exists to be more accepting of minority opinions in controversial documents.
  • NCVHS needs priority-setting mechanisms.
  • This document should capture the values point made by Dr. Scanlon on the previous day, and NCVHS should consider the appropriate process for addressing values issues.
  • This document can be useful in considering how to approach cross-cutting issues.
  • The document can help orient new members on how the Committee works together.
  • It should note the fact that the Committee uses strategic plans and other mechanisms to set priorities and make decisions.
  • Every member is expected to serve on at least one subcommittee.

 

The Committee then unanimously passed a motion approving the document and authorizing the Executive Subcommittee to make final modifications, with the understanding that this is a living document that NCVHS will periodically review and revise.

 

SUBCOMMITTEE AND WORKGROUP UPDATES

  • Subcommittee on Populations—Dr. Steinwachs

 

Following on its letter on data linkages, the Subcommittee plans to hold hearings to review the status of linkages roughly every two years, starting in late 2008 or early 2009. It is planning hearings on the medical home, and in particular measurement issues, to be held just prior to the May full Committee meeting. Several organizations and agencies are active in this area, and it connects to the Committee’s emerging interest in the information needed for health care reform or transformation (a project that Dr. Scanlon was asked to spearhead). The Subcommittee also plans to pull together a letter summarizing its work on surge capacity. It may be addressed to the Assistant Secretary for Preparedness and Response, who is likely to be most interested in the content. In addition, the Subcommittee is moving forward on revisiting the vision for 21st century health statistics. This is likely to involve both a progress report on the recommendations and an effort to update the vision itself, for example, to bring in the role of EHRs and PHRs.

 

Ms. Greenberg pointed out the intersections and synergies among several aforementioned topics—medical home, the health statistics vision, and information for health care reform, as well as with aspects of the recent report on enhanced protections for uses of health data. She noted that the health statistics vision update process could provide a coordinating mechanism for a number of issues on the Committee’s agenda. She also pointed out the opportunity for the Committee to make a new intellectual contribution as part of its 60th anniversary observations. Plans for the anniversary will be discussed at the May meeting.

 

Several Committee members welcomed these suggestions as a useful framework for comprehensive planning. Dr. Green noted the relevance, as well, of Dr. Chute’s forthcoming presentation on ICD-11. He added, “Every now and then in history there is more of a revolutionary moment, where the old ways of doing things need to collapse and new ways have to be born…. We are at the point of redesigning the data and information architectures that underlie the largest business in the United States…. The 60thanniversary meeting could very well be a great moment of consolidation and launching.”  Dr. Tang agreed, saying, “We are preparing the landscape for data-driven reform.” Dr. Cohn said the Executive Subcommittee would develop a proposal, based on the foregoing discussion.

 

  • Quality Workgroup—Dr. Carr

 

At its February 20 session, the Workgroup looked at the 2004 Quality Workgroup report and its 23 candidate recommendations, which “span the spectrum of the Committee.” The Workgroup wants to revisit and update that report; about 20 of its recommendations are still relevant, and the others have been accomplished. (Ms. McCall observed that no structure has existed for addressing the recommendations, although it was important foundational work.) In addition to these plans, the Workgroup may revisit some of the issues identified for follow-up in the report on data uses. It is also working on the medical home hearing, with the Subcommittee on Populations.

 

Dr. Tang linked the comments on the Quality Workgroup with the previous discussion of synergies. He urged that the Committee adopt, as a unifying project, the establishment of the data foundation for health care reform. Mr. Scanlon cautioned that this is not the time to kick off new initiatives, given the transitions under way; however, it is the time to lay the groundwork for such an integrative initiative a year from now. He recommended consolidating previous work and thinking about a framework for new work, but not initiating it yet. He also suggested using the word “policy” rather than “reform.”

 

Dr. Steuerle commented on the significance of having incentives to bring about desirable changes—incentives that do not currently exist. He urged that the Committee not lose sight of the incentive issues.

 

 

 

  • Subcommittee on Privacy and Confidentiality—Mr. Rothstein 

 

Having worked on the just-passed privacy letter until this meeting, the Subcommittee has no other work on its agenda for the near future.

 

  • Subcommittee on Standards and Security—Mr. Reynolds and Mr. Blair

 

Four of the Subcommittee’s six members are completing their terms, so the group is in transition and has been planning its legacy for the next membership group. It is also preparing two short letters for review at the May full Committee meeting.

 

  • NHII Workgroup—Dr. Cohn

 

Dr. Cohn observed that in recent years, much of the work in this group’s domain has been handled by ad hoc NCVHS workgroups. The next National Committee and Chair will determine the future of the NHII Workgroup.

 

Reflecting on earlier discussions, he noted that it takes 12 to 18 months for an NCVHS project to come to fruition, so it is not too soon to start planning the Committee’s next large project.

 

ICD-10 AND ICD-11 UPDATES—Christopher Chute, MD, DrPH, Mayo Clinic (see slides)

 

Dr. Chute chairs the ICD-11 Revision Steering Group of the World Health Organization. Dr. Cohn described him as an international thought leader on terminologies and classifications.

 

ICD-11 is intended for multiple use cases: morbidity and mortality public health reporting first and foremost; scientific consensus on high-level clinical phenotypes; patient data characterization for clinical and research applications; and primary care. There are several goals for the revision, including evolving an ontologically coherent classification that links logically to underpinning terminologies, making human language definitions explicit, and maintaining longitudinal consistency through linear derivatives. The classification is part of a much larger structure in the WHO Family of International Classifications (WHO FIC).

 

Dr. Chute reviewed several “familiar points along the continuum of modern health vocabularies” and called attention to the power of using aggregation logic. He noted the fundamental genomic transformation under way, replacing a syndromic understanding, and its impact on the understanding of classification. ICD-11 will provide the infrastructure and machinery to begin to accommodate the emerging understanding of the genomic underpinnings, manifestation and etiology of many diseases. There are also unprecedented implications for basic science and clinical medicine.

 

He described the current “chasm of semantic despair” between the worlds of bioinformatics and medical informatics, which are unable to speak to one another. After outlining the traditional hierarchical system of ICD-10, he showed how ICD-11 will allow for cross-relationships, linkages, and “arcing” among concepts. The designers will serialize the “cloud of semantic relationships” so the classification has the look and usability of the traditional ICD. This requires a distributed editing of complex information, with the requirements that the classification be intuitive, simple to use, cost-free, and with a low-profile application. It also must integrate with existing terminologies.

 

Dr. Chute then outlined the developmental process. A consortium of open-source distributed authors is contributing to common tooling, involving the Mayo Clinic’s Division of Biomedical Informatics, Apelon, the National Cancer Institute, and Stanford. The Wiki environment will be used in the creative process, linked to semantic Web technology to create a “semantic Wiki” that he called “the best of both worlds.” The

reasons for using Wiki are to augment the workforce WHO can bring to the table, and to engage the interest of the broad health and public health communities; and these hopes are being realized. The coordinators are assuring that the process takes place within a formal framework, and they will create formal change sets with integration between the Wiki and Protégé worlds to ensure ontological consistency. The Protégé OWL environment will be the final touch-up.

 

He then discussed the formalized associations with the International Health Terminology Standards Development Organization, and the developmental trajectory, related to SNOMED and ICD-11. The relationship is based on the fact that the two need each other: SNOMED will need high-level notes that aggregate more granular data (“terminological space”); and ICD-11 will need lower-level terminology for aggregation logic definitions (“classification space”). He said that “if we are very, very clever,” the two environments will someday merge in a joint effort, with advantages to both organizations. Moreover, “the mapping questions that have bedeviled the relationships between the ICDs and SNOMED for a decade now become moot.” Dr. Chute cautioned, however, that while the two organizations and their attorneys are talking, no agreements have been finalized by their governing bodies.

 

As for ICD-10, NCHS has agreed in principle to migrate ICD-10-CM to the ICD-11 platform by the year 2015. The ICD-11 revision will be informed by the clinical modifications of ICD-10, including ICD-10-CM.  NCHS will work closely with the ICD-11 Revision Steering Group and WHO-FIC Network to ensure the gradual evolution of ICD-10-CM to ICD-11 content through the regular updating of ICD-10-CM; this will avoid a disruptive transition to ICD-11.

 

 

Discussion

 

Dr. Cohn observed that this endeavor is important because the current transition from paper to electronic systems needs to be accomplished in a way that preserves data and accommodates a wide variety of capacities and levels of granularity. The vision outlined by Dr. Chute provides a way to successfully make this transition. Several other members expressed enthusiasm for the effort.

 

Asked what the industry should do while awaiting a decision by the two governing bodies, Dr. Chute recommended leveraging and refining the mapping tools between SNOMED and ICD-10; these will inform the ICD-11 development process. Ms. Greenberg predicted that a great deal would be learned from this mapping effort. She noted that the first thing the U.S. has to deal with is mapping to ICD-9-CM; the sooner this is accomplished, the sooner it can move to ICD-10-CM, which is a building block for ICD-11.

 

Members agreed that they would like a briefing from Betsy Humphreys of the National Library of Medicine regarding mapping progress.

 

Dr. Green pointed out the importance of capturing the connections between these activities and the medical home hearings. He asked Dr. Chute how ICD-11 would be used to create episodes of care, and was told that users will define the framework across which the tools and aggregations are used. Ms. Greenberg added that related work is being carried out with the other classifications, such as ICF and ICPC, affording good opportunities to structure the terminology as needed. Dr. Chute predicted that EHR vendors would create the functionalities for episode grouping.

 

Asked how his work connects to AHIC use cases and HITSP standards, he observed that ONC and HITSP have advanced the consolidation of standards, and he predicted “continued coalescence” in the future. In response to another question, he said a number of allied health and nursing personnel are involved in the revision process through the topic advisory groups, and WHO FIC incorporates a diverse community of health care experts in its processes. Asked about funding, he said most of the support for the ICD-11 revision process comes from the Japanese Hospital Association; WHO is investing a negligible amount and is seeking additional funding.

 

AHIMA/AMIA BRIEFING—Linda Kloss, AHIMA, and Dr. Keith Campbell, AMIA (slides)

 

Ms. Kloss said this joint AHIMA/AMIA project concerns what needs to be done “to get our house in order, to be ready for the kind of world we just were discussing.” In 2006, AHIMA and AMIA created an expert panel to wrestle with that question, and it released its white paper at the end of 2006. Since then, the groups have been “proselytizing and educating.” A shorter version of the report was prepared, for Congress and other non-technical audiences. The two organizations tackled the topic because terminologies and classifications are the language infrastructure for the NHIN; the U.S. lacks a vision and strategy for their coordinated development, maintenance and use; and standards harmonization alone will not solve the problem.

 

Dr. Campbell chaired the task force, whose 13 members included Dr. Chute. The white paper they developed in six months is intended to start the dialogue by outlining the thinking and requirements for ongoing adoption and maintenance of terminologies and classifications. The paper acknowledges the substantial progress made in recent years through the leadership of the NLM, NCHS, NCVHS and others, but asserts that not enough has been done to solve U.S.-specific infrastructure issues. It puts forth a vision of the desired state, based partly on lessons from other countries, and identifies critical short-term actions.

 

Continuing the presentation, Dr. Campbell said the task force members were frustrated at the lack of a clear, coordinated vision in the U.S. regarding terminologies and classifications, and they had consensus on the need to develop a funded organization, responsible for setting policy and shepherding work products. The task force’s fundamental message is that to create a national strategy in the absence of a nationalized health system, the U.S. needs a central organization. This will make it possible to migrate away from unfunded activities that are dependent on a few organizations. The activity in this country must mesh with those in other countries and must leverage the activities of the IHTSDO and the WHO FIC; and the process must be transparent. The task force envisions a collaborative effort, coordinated by the central policy body, toward the adoption of models and standard terminologies. The goal is a longitudinal, cradle-to-grave EHR. This requires a unified model of change so terminologies can evolve gracefully over time. Ultimately, this will make it possible to separate application development from data persistence. They are aiming for a standard set of detailed clinical models, coupled with standard coded terminology; standard APIs; and open sharing of models, coded terms and APIs.

 

The impediments to achieving these goals include fragmented public/private governance, a lack of incentives for collaboration, no standards, proprietary and complex licensing, and a lack of interoperability among EHR vendors. Hence, what is needed is a unified governance model, funded, with incentives to collaborate. To these ends, the task force made three recommendations, each with multiple action steps:

4)      Do more formal R&D, with public funding;

5)      Fund a centralized terminology authority, coordinated with AHIC’s successor; and

6)      Commit to adoption of sound principles of terminology development, with appropriate incentives.

 

Ms. Kloss pointed out that the group “stopped short of saying, ‘Here is the right way to design this.’ ”

 

Discussion

Asked about the NLM role in this vision, Dr. Campbell said its efforts on the UMLS are critical and have been very helpful, but there is not enough connectivity between NLM’s activities and those of the health care vendor community. A governance process is needed that will permit direct industry representation and input.

 

Asked how NCVHS can help, Ms. Kloss suggested that it put on its critical planning agenda helping to bring about a consensus on what the U.S. solution should be. She noted that this issue is central to the NCVHS mission. Dr. Cohn added that Ms. Humphreys would be asked for a briefing; and Ms. Greenberg pointed out the centrality of classification issues to the initiative to update the NCVHS health statistics vision.

 

Observing that “time has moved on since this report was written,” Dr. Campbell described some international developments since 2006. Asked for real-life examples to help concretize the vision, he pointed to Kaiser’s national pharmacy data warehouse. One of the greatest areas of demonstrated clinical benefit from coded terminology concerns the prevention of drug-drug and drug-disease interactions and adverse outcomes, and there is considerable ROI in this area. Ms. Kloss noted the cost of doing things the way they are done now, and Dr. Steindel said several evolving national models are starting to produce evidence in other countries.

 

After a few concluding comments, the meeting was adjourned.

 

 

 

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

 

5-21-08

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Chair                                                                                                    Date