The transcript of this meeting and presenters’ slides (when available) are posted on the NCVHS Web site — http://ncvhs.hhs.gov

Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

June 29-30, 2005

Washington, D.C.

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on June 29-30, 2005, at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:

Committee members

  • Simon P. Cohn, M.D., M.P.H., FACP, Chair
  • Jeffrey Blair, M.B.A.
  • Justine M.Carr, M.D.
  • Richard K. Harding, M.D.
  • John P. Houston, J.D.
  • Stanley M. Huff, M.D.
  • Robert W. Hungate
  • A. Russell Localio, Esq., M.A., M.P.H., M.S.
  • Carol J. McCall, F.S.A., M.A.A.A.
  • Harry Reynolds
  • Mark A. Rothstein, J.D.
  • William J. Scanlon, Ph.D.
  • Donald M. Steinwachs, Ph.D.
  • C. Eugene Steuerle, Ph.D.
  • Kevin C. Vigilante, M.D., M.P.H.
  • Paul Tang, M.D.
  • Judith Warren, Ph.D., R.N.

Staff and liaisons

  • Marjorie Greenberg, NCHS/CDC, Executive Secretary
  • James Scanlon, ASPE, Executive Staff Director
  • J. Michael Fitzmaurice, Ph.D., AHRQ liaison
  • Karen Trudel, CMS liaison
  • Virginia Cain, NIH liaison
  • Ed Sondik, Ph.D., NCHS liaison
  • June O’Neill, Ph.D., NCHS BSC Chair
  • Steve Steindel, Ph.D., CDC liaison

Others

  • Vickie Mays, Ph.D., former NCVHS member
  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Marietta Squire, NCHS
  • Susan McAndrew, OCR
  • Anna Poker, AHRQ
  • Audrey Burrell, OMH
  • Kathleen Fyffe, ONCHIT
  • Mary Jo Deering, NCI
  • Dan Rode, AHIMA
  • Paul Speidell, AMA
  • Edna Paisano, IHS
  • Jeannine Christiani, Magna
  • Emily Nolte, NORC
  • Cynthia Sidney, NCHS
  • Judy Frazier, Amer. Optometric Assn.
  • Anne Rodgers, NCVHS consultant
  • Gwyneth Moya, NCHS
  • Bill Alfano, BC/BS
  • Erika Meeker, DecisionHealth
  • Nancy Ferris, Government HealthIT
  • Frank Kyle, Amer. Dental Assn.
  • Barry Dickman, VHA
  • Suzie Burke Bebee, ASPE
  • Miryam Granthon, OMH
  • Daniel Belipotsom, NJ Tech Daily
  • Tom Schneth
  • Rochell Woolley, RxHub
  • Patrick Hadley, OCR
  • Laura Vartain, Wexler & Walker
  • Jason DuBois, ACLA
  • Patricia Rewell, ANA
  • Virginia Bartlett, IMS Health
  • Bob Krombee, CMS
  • Alex Berman, OMH
  • Richard Singerman, ONCHIT
  • Lori Greene, Amer. Psychological Assn.
  • Sam Charver, FasterCures
  • Peggy McShane, Booz Allen Hamilton
  • Michael DeCarlo, BC/BS
  • Vivian Auld, NLM
  • Missy Krasner, ONCHIT
  • Laura Blum, JCAHO
  • Jean Narcisi, AMA
  • Nancy Spector, AMA
  • Marilyn Luke, AHIP
  • Anthony Schueth, Point of Care Partners
  • Ross Martin, Pfizer

EXECUTIVE SUMMARY

ACTIONS

Following discussion, the Committee passed a motion to approve the report Eliminating Health Disparities: Strengthening Data on Race, Ethnicity and Primary Language in the United States, with further wordsmithing to be performed based on members’ suggestions and final review by the Executive Subcommittee.

DEPARTMENT UPDATES

Data Council: Jim Scanlon

Data Standards: Karen Trudel

Privacy Rule Compliance Update: Ms. McAndrew

Mr. Scanlon reported on plans for the formation of the American Health Information Community (AHIC), a Data Council review of the Department’s surveys, and prospects for the FY 2007 budget.

Ms. Trudel reported on the status of rulemaking, outreach activities, compliance, and complaints. The Office of HIPAA Standards has a new name: The Office of eHealth Standards and Services.

Ms. McAndrew introduced a new OCR staff member and reported on a new guidance, comments on the enforcement rule, and the status of complaints. Mr. Houston reiterated his request for statistics on the nature of complaints and offered to help, and Mr. Rothstein asked for data on complaints related to minimum necessary.

UPDATE: NCHS BOARD OF SCIENTIFIC COUNSELORS (BSC) — Dr. Sondik, Dr. O’Neill

Dr. Sondik introduced the BSC Chair, Dr. June O’Neill, a professor of economics and finance at the City University of New York. She reported that the BSC has initiated a review of the Center’s activities and programs, using scientific standards. It has developed a protocol and will appoint expert reviewers at the next meeting.

Following discussion with the Committee, Dr. Sondik called attention to the newly released volume edited by former NCVHS member Dr. Dan Friedman, Ed Hunter of NCHS and Gib Parrish, formerly of CDC— Health Statistics: Shaping Policy and Practice to Improve the Population’s Health.

POPULATIONS REPORT: Eliminating Health Disparities: Strengthening Data on Race, Ethnicity and Primary Language in the United States — Drs. Steinwachs and Mays

This new report has two major recommendations. The first concerns enhancing the quality, reliability and completeness of data collection and data integration on race, ethnicity and linguistic subpopulations in the U.S. The second concerns improving dissemination and the infrastructure so people can access and use the data. The report proposes far-reaching strategies for each major recommendation. (See Actions.)

NCVHS 2003-2004 REPORT

The Committee discussed this report and recommended a few revisions. It will be an action item at the September meeting.

UPDATE ON ONCHIT— Dr. Brailer

Dr. Brailer briefed the Committee on ONCHIT’s November 2004 RFI results, which complete a foundation that has clinical, business and technical dimensions. Announcements that followed began with the formation of the American Health Information Community (AHIC), which is to be the locus of public-private decision making using a recommendation vehicle. It is to be closely aligned with other efforts, including NCVHS. The aim is to seat the Commission by the end of FY 2005. The RFI summary also was followed immediately by RFPs related to standards harmonization, certification of technologies, nationwide connectivity among certified EHRs, and harmonizing state and federal privacy and security laws and regulations to enable connectivity. The plan is for contracts to begin this fiscal year. Discussion of the RFPs during this meeting was restricted because the RFP period was still open.

In the discussion period, members talked with Dr. Brailer about the relationship between AHIC and the Commission on Systemic Interoperability, the need to develop the NHII into learning systems for quality improvement, promoting acceptance of HIT uses, and using the current political momentum behind HIT.

BRIEFING ON FEDERAL HEALTH ARCHITECTURE—LeRoy Jones, ONCHIT

The federal health architecture (FHA) is a forum for stakeholders within the federal health enterprise to come together and inform each other of their activities, and an opportunity for them to collaborate on common target architectures. CHI has become part of the FHA, which was established in June 2003 as part of e-government, and later placed under the ONCHIT umbrella. The endeavor encompasses “as-is” architecture, “to-be” architecture, and a “transition approach” between the two. The final goal is shared data and resources, interoperable technologies, and coordinated, streamlined processes. Mr. Jones described the commitments and processes involved in moving federal agencies toward this goal. FHA has workgroups on food safety, public health surveillance, the EHR, CHI, and interoperability. As issues that must be addressed, Mr. Jones highlighted what it means to be “aligned” with the FHA initiative and how to measure progress; integrating FHA into the rest of the health IT agenda; and continuing the merger of CHI into FHA.

In the discussion period, Mr. Blair noted the significance and vision of CHI and said NCVHS would like to build on CHI standards in linkages to other terminologies, with a broad use case vision that he commended to ONCHIT as it moves forward. Other discussion touched on motivational issues in the transition to standards, their voluntary nature, and the FHA’s shortage of staff resources.

COMMISSION ON SYSTEMIC INTEROPERABIILTY—Scott Wallace, Chair

This Commission is a private sector entity, created by the Medicare Modernization Act (2003) as a mechanism for private sector input to the Secretary, Congress and the President on how healthcare IT (HIT) should work. One role is to “broaden the appeal” of HIT for the uninitiated. It addresses consumer, provider and financial issues related to HIT, and its report may also look at the government role. The Commission is seeking to articulate the business case for quality and looking at the effect of interoperability on competition. On finances, it believes that if consumers see a value for IT, they will help pay for it. It is focusing on actionable recommendations and aims for an engaging style for its report. It regards its audiences as the Secretary, Dr. Brailer, Dr. McClelland, the President, Congressional leaders, the health care community, and ultimately consumers.

In response to questions, Mr. Wallace said the Commission plans to articulate a broad consumer vision and the business rationale, not a “grand vision of standards.” Members noted the benefits of the Commission’s frank discussion of challenging issues and queried Mr. Wallace about what made the Commission’s process successful.

CCHIT UPDATE—Mark Leavitt, M.D., Ph.D., Chair

The Certification Commission for Healthcare Information Technology (CCHIT) was created as part of the Department’s Framework for Strategic Action to support several strategies, particularly reducing the risk of EHR investment. It was founded by three non-profit HIT associations—HIMSS, AHIMA and the National Alliance for HIT. The mission is “To accelerate the adoption of robust, interoperable HIT throughout the US health care system, by creating an efficient, credible, sustainable mechanism for the certification of HIT products,” to help influence the purchase of products that deliver what is needed. Certification is binary (pass/fail), and is to be “based in the realities of the market.” The criteria will be updated annually. CCHIT will take standards developed by others and determine how to certify against them. It has work groups on functionality, interoperability, security and reliability, and the certification process; a new work group is developing use cases and test plans. Dr. Leavitt described the results of the 30-day comment period. In phase II, CCHIT will harmonize the formats of the different work groups and release the first draft of the use cases.

NCVHS members commented on the need to engage providers before they are stuck with rigid systems, the relationship of CCHIT work to HIPAA issues, using the work of standards bodies, the degree of commitment to interoperability among the big vendors, and the relationship to the CHI process. There was also interest in whether the CCHIT model could be used with other issues, such as quality.

PANEL: ANSI-HISB AND ISO TC

Audrey Dickerson, Manager of Standards Initiatives, HIMSS and ISO

Gary Dickinson, Chair, US TAG

Robert Owens, Chair, ANSI Healthcare Informatics Standards Board (HISB)

Ms. Dickerson focused on the status of international standards in the U.S. ISO/TC 215 was organized through a consensus process in 1998. The technical committee for health informatics now has eight work groups and more than 100 draft standards. She conveyed recommendations to the Secretary concerning federal use of ANSI health information standards and federal participation in ISO/TC 215.

Mr. Dickinson reported that the U.S. Technical Advisory Group (TAG) has 51 members from a range of industry, academic and government interests. The U.S. is in a strong leadership position in ISO 215, with three convenors and one vice-convenor among the eight working groups. ISO intends not to necessarily produce standards but, where possible, to adopt documents or standards produced by others and/or to encourage other bodies to develop standards to fulfill ISO TC215 objectives. There is growing emphasis on first establishing requirements and using these as a benchmark for achievement. The key issues for the TC and the U.S. TAG are to gain participation of key stakeholders and to ensure balance between producers and users. Mr. Dickinson concluded with of a list of things government can do in this arena.

Mr. Owen focused on how ANSI came into being in the context of the U.S. standards system, relevant legislation, HISB accomplishments, and the direction it is headed. ANSI is a founding member of ISO, formed in 1947. ANSI has delegated its responsibility for secretariat to HIMSS but continues oversight and review of the ISO TC 215, which was born out of ANSI HISB. ANSI is the coordinating body for the private sector to accredit its SDOs. ANSI HISB’s mission is to provide an environment that facilitates, coordinates, harmonizes and promotes the use of national and international healthcare informatics standards. It has gotten the SDOs to agree on an approach, or protocol, for coordination and conflict resolution.

In the discussion period, Dr. Cohn said the Subcommittee on Standards and Security will be reviewing the panelists’ recommendations and may follow up on the suggestion that federal agencies should be more involved with international standards-setting.

HEALTH STATISTICS AND NATIONAL HEALTH INFORMATION INFRASTRUCTURES——Daniel Friedman, Ph.D.

Dr. Friedman, a former NCVHS member, gave a status report on a current project on the relationship of health statistics to national health information infrastructures (NHIIs). Its purpose is to assess the potential contribution of NHIIs, and especially sharable and shared EHRs, to health statistics. The report will describe strategies for shared EHRs in Australia, Canada, England and New Zealand as they relate to health statistics; summarize key themes that emerged from informant interviews in those countries and the U.S., delineate major analytic issues, and propose next steps for the U.S. Dr. Friedman’s definition of the EHR distinguishes between the EHR as a repository and as a system. His research has involved extensive materials review and a series of about 100 key informant interviews. He briefly described his findings about England and Canada. As analytic issues, he highlighted the distinctions between population health and health care data and the lack of clarity about how health statistics would work with shared EHRs, including the question of whether the analytic tools exist to cull data from shared EHRs.

In the discussion period, members expressed strong interest in Dr. Friedman’s analysis, and Dr. Cohn said he would be invited back to continue the conversation.

REPORTS FROM SUBCOMMITTEES AND WORK GROUPS; FUTURE AGENDAS

(See brief summaries in the next section.)

DETAILED SUMMARY

—DAY ONE—

CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA

Dr. Cohn called the meeting to order. Following the customary introductions, he commented on the activities of the last several months, in which the Department has accelerated its leadership in health information technology and the movement toward the NHII. He noted Secretary Leavitt’s recently-announced 500-day plan, a centerpiece of which is the next phase of the HHS health IT strategy. The question remains how the Committee can best support the Department as it moves forward. Dr. Cohn reported on his positive meeting with the Secretary the previous day, having briefed him on NCVHS and discussed ways the Committee can assist him. He then welcomed Dr. June O’Neill, the Chair of the NCHS Board of Scientific Counselors (BSC), and noted that he had appointed Dr. Bill Scanlon as the Committee’s liaison to the BSC.

DEPARTMENT UPDATES

Data Council: Jim Scanlon

The Secretary’s June 6 announcement of the health IT strategy and initiative included the formation of an advisory committee, the American Health Information Community (AHIC), composed of 17 “captains of the health industry” appointed by HHS. The Secretary will chair the group, which is chartered for two years. The goal is for it to transform into a public-private entity within 5 years. Mr. Scanlon predicted that NCVHS would be formally involved with that group, and he noted that many of the ideas now coming to fruition were incubated by NCVHS.

The Data Council is completing a periodic review of the Department’s major surveys in population health, human services and economic statistics. It expects tight budgets for FY 2007. Its main priority is to nurture and protect the basic statistical systems; in addition, the Data Council has targeted several areas for improvement, including prescription drug data, health insurance data, state data, data on income and assets, and race and ethnicity data. Mr. Scanlon described the intended improvements in these areas. The Data Council’s privacy and confidentiality committee also is active, and a new study of data collection and measurement standards has been initiated.

On standards, Ms. Greenberg noted the possibility in the future of obtaining some data from EHRs that have traditionally come from surveys and stressed the importance of coordinating with the work of standards development organizations such as HL7 and X12. Mr. Scanlon said the Data Council would take existing standards into consideration and agreed on the importance of linking population-based surveys with administrative and potentially clinical data.

Ms. McCall asked about the possible creation of crosswalks between different standards, terminologies and taxonomies, to promote interoperability, and Mr. Scanlon acknowledged that this is a classic and complicated problem. HHS has agreed to conventions for some data elements in surveys, and it will look for more opportunities.

Mr. Localio asked what is being done to coordinate the various privacy/confidentiality initiatives of the Department and NCVHS. Mr. Scanlon said they have different perspectives, but they will indeed need to communicate.

Data Standards: Karen Trudel

The proposed rule on claims attachments went to OMB on May 30 and is scheduled for publication on September 23. The national provider identifier enumeration system went into operation on May 23 and to date, 22,000 providers have been enumerated. The Department has revved up its outreach process and had a successful HIPAA roundtable call on NPI issues, with 1,500 participants. Work continues on the e-prescribing final rule and on plans for the pilot to be carried out in 2006. CMS and AHRQ are working closely on this.

More than 99 percent of inbound claims and 81 percent of remittances advices are

HIPAA-compliant. Fewer than 30 percent of coordination and benefit transactions are in compliant format because of a recent switch to a new contractor. The Department has received 334 complaints on transactions and code sets, of which 190 are still open. Only a few security complaints have been received.

The Office of HIPAA Standards has a new name: The Office of eHealth Standards and Services. CMS will hold an open-door forum in July on the concept of personal health records and what CMS’ role should be in this space. Dr. Cohn will present the material that NCVHS has gathered on this topic, to lay the groundwork.

A question from Mr. Blair about the uptake of CHI (consolidated healthcare informatics) standards was deferred to the discussion on the federal health architecture later in the meeting. Ms. Trudel noted that the expectation has been that CHI implementation would take a longer time than HIPAA implementation. Also, the denominator is difficult to ascertain. DoD and VA are working on implementing CHI standards.

Asked if CMS would move toward permitting claims submission over the Internet, consistent with its own policy, Ms. Trudel said it “definitely” would, but it will require a huge infrastructure to support it.

Privacy Rule Compliance Update: Ms. McAndrew

Ms. McAndrew introduced Patrick Hadley, who has joined OCR to take over the outreach and public education function. She said OCR issued new guidance on state-based protection and advocacy programs for mentally disabled persons. The comment period for the HIPAA enforcement rule closed the previous week, having generated about 50 comments. OCR has received a total of about 13,000 privacy complaints to date, and maintains a closure rate of 65 percent. Impermissible uses and disclosures are most often the subject. 211 complaints have been referred to the Department of Justice for possible criminal prosecution. In response to a question, she said she didn’t expect a ruling from DoJ on what is prosecutable to have an impact on the complaints to OCR.

Mr. Houston reiterated past requests for statistics on trends regarding types of providers and the nature of the issues and where they are arising, to help the Subcommittee on Privacy and Confidentiality set its agenda. He was told that OCR hopes to supply them when staffing permits. Mr. Houston offered to work with OCR on this project. Mr. Rothstein asked for more information on complaints related to minimum necessary.

Mr. Hungate noted that the 13,600 complaints represent a tiny fraction of the universe of health care transactions and providers in the U.S. Ms. McAndrew agreed, adding that typically, providers fix identified problems and are the subject of no further complaints. Mr. Reynolds suggested that the learnings from these interactions be pulled together so other providers can benefit from them.

Mr. Blair stressed the importance of public education to persuade a larger percentage of the American population of the benefits of electronic records and to allay their anxieties about privacy.

UPDATE: NCHS BOARD OF SCIENTIFIC COUNSELORS (BSC) — Dr. Sondik, Dr. O’Neill

Dr. Sondik introduced the BSC Chair, Dr. June O’Neill, a professor of economics and finance at the City University of New York. He hailed the decision to include people with an economics and health economics background in the BSC, adding a useful perspective and strengthening the Center’s links to the health economics community.

Dr. O’Neill thanked Dr. Mays for her participation in the BSC as NCVHS liaison since its inception. She noted that the recent use by the Department of incorrect estimates on obesity would lead to more careful checking before announcements are made. The BSC has now embarked on its effort to apply scientific standards to reviewing the Center’s activities and programs. It has developed a protocol for evaluating them and will appoint expert reviewers at the next meeting. The dimensions to be examined include the program activities and information product, the Center’s capacity and resources for dealing with it, and efforts to improve. In each category, questions will be asked about the current status, quality of the program, and responsiveness to users’ needs. The BSC will produce a final report on the review. A major BSC concern is the resources available for health statistics, partly resulting from the lack of any advocates for resources and the public’s lack of awareness of the importance of statistics.

Dr. Steuerle observed that problems often come from “not knowing what we don’t know,” and he wondered about devising a systematic way to look at this question. Dr. O’Neill and Dr. Sondik both accepted this as an excellent suggestion. Ms. McCall noted that the Quality Workgroup has discussed the need for mechanisms to translate new knowledge into practice.

Asked how the CDC reorganization is affecting NCHS, Dr. Sondik said NCHS has fared well in the 2006 budget compared to other parts of CDC, and progress is being made on getting heads of the new Centers on health marketing and health informatics. All the structures of “the new CDC” are now in place; the issue now for CDC is how to do business with a more limited budget.

Dr. Sondik called attention to the newly released report Health Statistics: Shaping Policy and Practice to Improve the Population’s Health, edited by former NCVHS member Dan Friedman, Ed Hunter of NCHS, and Gib Parrish, formerly of CDC. It grew out of the work of NCVHS, NCHS and the Data Council, first expressed in the report, Shaping a Vision for 21st Century Health Statistics. All members will receive a copy of the new report. (See Dr. Friedman’s presentation below.)

POPULATIONS REPORT: Eliminating Health Disparities: Strengthening Data on Race, Ethnicity and Primary Language in the United States — Drs. Steinwachs and Mays

Dr. Steinwachs reviewed the history leading up to production of the current report, beginning with June 2001 hearings on race and ethnicity data by the Subcommittee on Populations. The report has two major recommendations. The first concerns enhancing the quality, reliability and completeness of data collection and data integration on race, ethnicity and linguistic subpopulations in the U.S. The second concerns improving dissemination and the infrastructure so people can access and use the data. The report also proposes far-reaching strategies for each major recommendation focused on the Department, other federal and state agencies, and the private sector. Dr. Steinwachs invited comments on the report.

Dr. Tang praised it for addressing four topics related to data: how to ask for it, how to collect and store it, how to interpret it, and how to protect it. He suggested greater emphasis in the report on asking and protecting. Dr. Steinwachs noted that the Subcommittee may choose to address these topics as it moves forward, as well. Dr. Vigilante called attention to the report’s call for more linkages between different kinds of data sets, notably to education data. Dr. Mays said the report Health United States might be a place for some of this type of analysis. Ms. Greenberg noted that adding a socioeconomic variable in uniform data sets is a past NCVHS recommendation, and one worth revisiting with respect to the PHR and EHR. Dr. Sondik encouraged the Committee to strengthen the point about linkages both within and outside the Department. Others suggested examples and more specificity about strategies. Following discussion, the Committee passed a motion to approve the draft, with further wordsmithing to be performed based on members’ suggestions and final review by the Executive Subcommittee.

Dr. Steinwachs and Dr. Mays expressed appreciation to the staff and members of the Subcommittee on Populations for their contributions to this effort. Dr. Mays urged that all those consulted in the research and hearing phase be provided with printed copies of the report. The group offered a number of suggestions for further disseminating the report, such as to the federal statistical agencies through Kathy Walman at OMB, through the Secretary, at various meetings including the next NCHS data users meeting, and to the individuals who attended the hearings.

NCVHS 2003-2004 REPORT

Members agreed that the bulk of the draft report is acceptable as drafted. They focused on the two final sections, on past NCVHS recommendations for the HHS research agenda and on the Committee’s plans for the future. They agreed to remove the section on past research recommendations, adding general and specific references to research priorities where appropriate. The Committee will consider developing a separate report or letter addressing past recommendations for the HHS research agenda that have languished, and/or new recommendations for research. If the Committee decides to go forward with such a letter/report, it could be mentioned in the “Looking Ahead” section. That section will be further developed after the Executive Subcommittee discusses the Committee’s work plan for the coming year at its August retreat. The group agreed that in addition to a sense of the overarching strategic direction of the Committee, the report should mention which NCVHS sub-groups are taking the lead in various initiatives. Mr. Reynolds and others cautioned against getting too specific in the “looking ahead” section. The 2003-2004 report will be an action item at the September meeting.

UPDATE ON ONCHIT— Dr. Brailer

Dr. Brailer characterized the Secretary’s recent announcements as the result of the work of a group of talented federal leaders who had been “struggling somewhat in the wilderness” and have now been brought together in a “very focused and enabled group.” He congratulated the Committee on having created much of the momentum and vision for these developments.

ONCHIT has released a summary of its November 2004 RFI, which asked for feedback on the Framework for Strategic Action and related activities. The summary completes a foundation with clinical, business and technical dimensions. The business component supplements a May report of the Health Care Leadership Panel, which conveyed the answers of 100 CEOs to questions about the role of and need for health IT, especially in regard to the economics of health IT. The technical foundation gives insight into “the boundary of reasonable thinking” around technical issues. The process of reviewing the responses to the RFI, Dr. Brailer said, stimulated valuable dialogue among federal employees. The RFI summary was followed immediately by RFPs which were the product of months of analysis and discussion.

The major takeaway messages from the RFI summary are:

  • Health information sharing should be decentralized, using the Internet.
  • Uniform communication standards that are open must be used.
  • The governance process should reflect the needs of both public and private stakeholders.
  • Information should be patient-centric, with adequate privacy protections.
  • Incentives to drive adoption should be considered.

The announcements that followed began with the formation of the American Health Information Community (AHIC), a federal advisory committee with 17 commissioners, half federal agency heads and half from the private sector. Membership criteria are still being worked out. This is to be the locus of public-private decision making, using a recommendation vehicle. It is to be closely aligned with other efforts, including NCVHS, federal health architecture, CHI, and the RFPs issued by ONCHIT. The aim is to seat the commission by the end of FY 2005.

Dr. Brailer briefly described the four RFPs that ONCHIT has announced related to standards harmonization, certification of technologies, nationwide connectivity among certified EHRs, and harmonizing state and federal privacy and security laws and regulations to enable connectivity. The plan is for contracts to begin this fiscal year. On other subjects, ONCHIT has a project underway with AHIMA to develop fraud detection techniques. It is also developing architectures for storing and managing medical knowledge and exploring the economics of the EHR adoption gap between large and small providers and how to close the gap. It is continuing to study and monitor health IT adoption, has several surveys underway for this purpose, and is still working out the best mechanism for tracking adoption. In summary, Dr. Brailer stated that “we have pursued an interoperability forward strategy.”

Discussion

Responding to a question, Dr. Brailer said there was close coordination between ONCHIT’s work on a standards roadmap and the work of the Commission on Systemic Interoperability. The Commission will chart an end-stage vision for what health IT will do from the standpoint of patients/consumers and other end-users. The AHIC will be the successor to the Commission’s work and help implement and prioritize its recommendations.

Mr. Rothstein asked about the choice between moving extant paper records to an electronic file versus starting with current data. Dr. Brailer said transition questions are not an element of the national plan; this will be left to the private sector. Dr. Brailer noted that he could not comment on the RFPs beyond what is in the public document — a constraint that applied to all discussion during this meeting, since the RFP period is open. He added that the RFPs will create a “starter kit,” and the AHIC will be watching the process to assess the utility and practicality of what it generates.

Mr. Reynolds noted the importance of “culture” with respect to people’s reluctance to provide information for various reasons. He asked about plans for education to build receptivity to the changes underway. Dr. Brailer predicted that young physicians and young consumers, who are accustomed to a connected and networked world and will not tolerate less in health care, would play key roles in the change. The question then is how to “create the enablers so that this cultural phenomenon can take center stage.” Technical capacity is one enabler, and the cultural phenomenon also needs to be accelerated. His office’s efforts are directed at creating tipping points in both areas. He expressed optimism that health IT will increasingly resonate with the public, partly thanks to positive media coverage from the standpoint of “real people.”

Ms. McCall referred to discussions at the Quality Workgroup’s June retreat, which highlighted the lack of measures for quality and value and the need to design systems for learning. She asked how Dr. Brailer was approaching knowledge management, wondered how to ignite cultural change and consumer demand, and asked how NCVHS could best contribute to the work. Dr. Brailer commented on health IT use as a component of performance measurement and the unanswered question of whether the capacity to report quality data should be an attribute of the EHR or of the architecture that connects them. He recommended caution and reasonable expectations about the capacity to report, adding that the question strikes at the heart of what AHIC and others will be looking at in terms of the public health value of health IT.

Dr. Steuerle noted the growing momentum and interest in health IT in the political sphere and asked how this momentum might be “guided” to generate additional funding. Dr. Brailer expressed confidence in what will be learned from the RFPs and said his vision is that the architecture will be built through market-based investments, not public dollars (which in his view would lead to federal control). He called attention, however, to needs related to the safety net and in rural and underserved clinics. Government, he said, has “a responsibility to ensure that they come along.” “We have to make sure that everyone” can enjoy the health status benefits that patients can derive from health IT. He also singled out small physician offices for special attention and said he would welcome a chance to address these questions further.

BRIEFING ON FEDERAL HEALTH ARCHITECTURE—LeRoy Jones, ONCHIT

Mr. Jones noted the array of stakeholders, activities and agendas within the federal health enterprise. The federal health architecture (FHA) is a forum for the stakeholders to come together and inform each other of their activities, and an opportunity for them to collaborate on common target architectures. He described the “gentle path” leading to the present and stressed the role of CHI, which has become part of the FHA. The latter was established in June 2003 as part of e-government, a subset of the federal enterprise architecture, and placed under the ONCHIT umbrella when that Office was created. Fifteen Departments are involved in the FHA, with HHS as the managing partner and DoD and VHA as lead partners. FHA is trying to identify the strategic business drivers, document business processes and define the information associated with the processes to deliver federal health services. The endeavor encompasses current “as-is” architecture, future “to-be” architecture, and a “transition approach” between the two. The final goal is shared data and resources, interoperable technologies, and coordinated, streamlined processes.

FHA espouses a process in which agencies can participate fully or tangentially, depending on their internal architecture processes. The long-term goal is an integrated set of processes with the same methodologies and techniques. However, there is realism about the fact that health is often part of a larger architecture. The components or stages that lead participants toward integration include a commitment to the FHA process, as reflected in the agencies’ internal architectures; a commitment to the FHA architecture by formalizing it internally; a commitment to implementation of FHA in agency systems. The last step involves a published time frame, a published migration plan, and a system description showing how FHA is incorporated. The net result is called “FHA alignment.”

FHA workgroups operate in the domains of access to care, population health and consumer safety, health care administration, health care service delivery, and health care research and practitioner education. The workgroups are on food safety, public health surveillance, the EHR, CHI, and interoperability. Mr. Jones described the thinking about how the workgroups and domains interact. The workgroups are responsible for weaving together the objectives of the Strategic Framework, federal health systems, and the FHA. The analysis is based on the specific business drivers of each entity with respect to their health operations. The FHA model encompasses business, information, service components and technology layers. The anticipated benefits of the FHA—accomplished through consensus groups—are to promote interoperability, expedite data sharing, enable resource sharing, help secure project funding, facilitate decision making and provide an established channel for coordination.

As issues that must be addressed, Mr. Jones highlighted the issue of what it means to be “aligned” with the FHA initiative and how to measure progress; integrating FHA into the rest of the health IT agenda; and continuing the merger of CHI into FHA. He noted that ONCHIT has a small staff and the latter task poses a challenge. How best to interface and partner with NCVHS is another question.

Discussion

Mr. Blair commented on the role and significance of CHI standards, which were developed as “not just a laundry list” but as the beginning of an interrelated information infrastructure. Mr. Jones said he hears from people in the private sector that they are waiting for movement toward the standards, which are held in high regard, so they can follow government’s lead, and ONCHIT wants this to happen. The recent RFPs are designed to establish what use cases the industry values and prioritizes and to identify what standards are relevant and where there are gaps. CHI will be foundational to any such discussion. Mr. Blair added that NCVHS would like to build on the CHI standards in linkages to other terminologies, with a broad use case vision: capturing robust, comprehensive, clinically specific data at the point of care, and then using derivatives of that information for reimbursement, research and public health. He commended this vision to ONCHIT as it moves forward with FHA.

Dr. Huff, who will take the lead in this NCVHS endeavor, supported the vision and observed that some people tend to think that CHI is “for the other guys,” not realizing that they are expected to conform to the standard. Motivating people to change needs to start at the top, he said, and he asked if Mr. Jones foresaw having the authority to effect change in federal agencies. Mr. Jones returned to the idea of a gradual transition to FHA, with CHI as part of it, adding that people are not to be forced to adopt the standards. The task, then, is to make the FHA process integral to agency operations over time. OMB is invested in this outcome, as well, and asks for regular reporting on participation. Dr. Tang asked whether any resources came with the CHI when it was integrated into FHA, and was told there is “money but no staff” dedicated to the CHI task.

Dr. Cohn thanked Mr. Jones and said he anticipated a close working relationship between NCVHS and FHA.

COMMISSION ON SYSTEMIC INTEROPERABIILTY (CSI) —Scott Wallace, Chair

Dr. Cohn, a member of the Commission, noted the short time-frame in which it was asked to work. Mr. Wallace said its report would come out on October 24. The Commission is a private sector entity, created by the Medicare Modernization Act (2003) as a mechanism for private sector input to the Secretary, Congress and the President on how health care IT should work. Mr. Wallace noted that people “outside of the clique” still don’t understand health care IT, standards and interoperability; one role of the Commission is to “broaden the appeal” for the uninitiated, including consumers, Hill staffers, and people in government and health care.

It addresses consumer, provider and financial issues related to HIT, and its report may also look at the government role. Mr. Wallace described the trials consumers have to go through to get copies of their or their family members’ medical records—”the document game”—as a major consumer issue addressed in the report. It tries to highlight the non-partisan support for interoperable electronic records through personal stories. Regarding people’s fears about confidentiality breaches, the Commission believes they must be assuaged. It frames the issue as “confidentiality,” not “privacy,” and advocates controlled sharing and controlled disclosure. On another sensitive topic, the Commission report will avoid the phrase uniform patient identifier (UPI)— “the third rail word.” Nevertheless, ways to link consumers/patients and their information is a major question it will address with a recommendation.

Provider issues begin with the cultural issues noted above, which the Commission approaches in terms of the need for consistency (i.e., standards). Mr. Wallace noted that consistent IT systems cannot be deployed in a world of diverse, non-standardized care processes, and the Commission is looking at how to address that issue. It is also seeking to articulate the business case for quality, to help create greater understanding of and demand for quality by consumers. And it is looking at the effect of interoperability on competition and how to address it.

In the financial realm, Mr. Wallace noted the perennial battle among payers, providers and IT vendors over who should pay for health IT, and the significance of health care costs in labor disputes. The Commission thinks that if consumers see a value for IT, they will help pay for it. It also is seeking a way to advise Congress on a better way to keep track of the federal investment in health care IT. Finally, the report will tell the stories that demonstrate success of HIT.

Mr. Wallace noted that of the inch-and-a-half thick stack of IT recommendations by IOM, about 10 or 12 have actually been implemented. He said the Commission is focusing on actionable recommendations, and it aims for an engaging style for its report. It regards its audiences as the Secretary, Dr. Brailer, Dr. McClelland, the President, Congressional leaders, the health care community, and ultimately consumers.

Discussion

Dr. Tang noted the benefits of the Commission’s short tenure, because it can talk about the hard issues and “get out before the rocks fly.” He hailed the plans for frank, open discussion of challenging topics. Mr. Wallace said the trick is not to have the broader message be “sunk” by the more controversial issues. In response to a question, he said there would be several roadmaps but none focused expressly on standards. The Commission plans to articulate a broad consumer vision and the business rationale, not a “grand vision of standards.” Asked about the competitive obstacles to interoperability, Mr. Wallace said competition is a reality in the business world among vendors as well as providers; nevertheless, consumer demand for interoperability may be enough to overcome resistance.

Dr. Fitzmaurice noted that it was his understanding that the major charge to CSI was to create a roadmap for health data standards development and implementation. Mr. Wallace responded that in his discussions with people on the Hill, it became apparent that what was really needed was to articulate a broader consumer vision. He further explained that the majority of the people on the Commission, with a few notable exceptions, were not in a position to articulate a grand vision of standards. He suggested that it is better for the Commission to articulate a business rationale and business case and leave the standards harmonization to Dr. Brailer’s office and the recently issued RFP’s.

Ms. McCall asked what factors made the Commission’s process so successful, and how Mr. Wallace would define success. He described a process that began with polling of the Commissioners and assessment of their strengths and perspectives; that matched the size of tasks to the time available; that took into account what was already underway in other initiatives and what the Commission was charged with, and that focused on the Secretary’s request, “We need a vision.” It defines success in terms of regular consumers’ understanding the promise of electronic health records and expecting more than they do now, akin to what is commonplace in banking and other arenas. The group mentioned seniors and women as receptive target populations.

Dr. Cohn thanked Mr. Wallace and invited him to return after the report is released. Mr. Wallace noted that Dr. Brailer has done a good job of integrating the Commission’s work into the broader plan, and AHIC is a vehicle for moving ahead.

The Committee then recessed into break-out sessions, to reconvene the following day.

—DAY TWO—

CCHIT UPDATE—Mark Leavitt, M.D., Ph.D., Chair

The Certification Commission for Healthcare Information Technology (CCHIT) was created as part of the Department’s Framework for Strategic Action to support several strategies, particularly reducing the risk of EHR investment. It was founded by three non-profit HIT associations—HIMSS, AHIMA and the National Alliance for HIT—which nominated the first panel of commissioners, selected the Chairman, provided the start-up funding, and detailed staff members to the effort. The first meeting was September 2004, and CCHIT received broader funding in early June 2005, reflecting the broad support for the endeavor. Its mission is “To accelerate the adoption of robust, interoperable HIT throughout the US health care system, by creating an efficient, credible, sustainable mechanism for the certification of HIT products.” The guiding principles for success are timeliness, value for all key stakeholders, and integrity (defined in terms of transparency, objectivity and verifiability).

Dr. Leavitt noted the slow uptake of HIT compared with technology in other arenas, prompting concerns that it would be legislatively mandated. The interest in value for all stakeholders relates to the belief that it should be voluntary. He explained the distinction between product certification, organizational accreditation and professional certification. The goal is to help influence the purchase of products that deliver what is needed. Certification is binary (pass/fail), not based on a comparative rating system, and it is to be “based in the realities of the market.” The criteria will be updated annually. The goal is to create tipping points for new technology adoption—as has happened with personal computing, networking and wireless communication—by increasing confidence among providers in the quality and interoperability of the products. It is also to enhance the availability of adoption incentives from private and public purchasers and payers. Dr. Leavitt noted the multiple factors in “the HIT adoption deadlock,” one element of which is the fact that HIT vendors can’t bring down their sales costs until provider adoption accelerates. Breaking the deadlock involves a positive cycle of stimulating the market, reducing the risk for providers, and unlocking incentives from payers and purchasers.

The key stakeholders are end-users (providers), vendors, and payers/purchasers, each with distinct requirements. Other stakeholders include consumers and public health. “Standards are the substrate on which we build certification,” Dr. Leavitt said, and CCHIT will take standards developed by others and determine how to certify against them. Its four work groups are on functionality, interoperability, security and reliability, and the certification process, and a new work group is developing use cases and test plans. Members serve voluntarily and without compensation. Interaction with the industry is done primarily through organizations. There is careful attention to balance and diversity on the Commission and work groups, using a formal structure. CCHIT is focusing initially on the ambulatory care setting, where the adoption lag is greatest, and plans to begin a pilot process by December 2005. The timetable has changed slightly because of the RFP process. A series of hour-long “town calls” is scheduled for mid-July.

Dr. Leavitt described the process used by the work groups, moving from data-gathering to final requirements and producing certification roadmaps for 2006-2007. The criteria combine priority for stakeholders and availability in the marketplace. He showed work group spreadsheets to illustrate the structure of their work, and briefly described the work of the various groups. He then described the results of the 30-day comment period, with 2/3 of the comments from organizations and a third from individuals. Ten percent were from physician associations and about a third from vendors; the rest was a mix. The content was a balanced mix of supportive, constructive suggestions, requests for inclusion, concerns, and format issues. The Commission is trying to be user-friendly and will be responsive to suggestions.

In phase II, CCHIT will harmonize the formats of the different work groups and release the first draft of the use cases. It expects to collaborate and develop common use cases with other organizations with respect to the HHS health IT strategy. In addition, CCHIT is responding to the RFP on compliance certification and inspection process.

Discussion

NCVHS members asked questions and commented on the changes anticipated once interoperability comes on line, the need to move fast enough to engage providers before they are stuck with rigid systems, the relationship of CCHIT work to HIPAA issues, using the work of HL7 and other standards bodies, the degree of commitment to interoperability among the big vendors, and the relationship to the CHI process. On competitiveness among vendor participants, Dr. Leavitt said CCHIT is trying to create a culture that requires participants to leave their individual agendas at the door. Dr. Steindel, who serves on a work group, said its culture has indeed evolved from individual biases to a search for synergistic solutions and shared learning. On the CHI, he said it is consistently brought up in the interoperability work group, and there is interest in standards introduction within a couple of years.

Ms. McCall proposed as food for thought the question of how extensible the CCHIT model is into other domains, such as those with which the Quality Workgroup is concerned. She praised it as “an elegant and robust model.” Dr. Cohn suggested that the Quality Workgroup talk further with Dr. Leavitt or another CCHIT staff member.

PANEL: ANSI-HISB AND ISO TC

Audrey Dickerson, Manager of Standards Initiatives, HIMSS and ISO

Ms. Dickerson focused on the status of international standards in the U.S. She noted that Secretary Leavitt highlighted the importance of international standards in his June 6 talk to HIMSS. Globally, consensuses standards are in wide use; she cited examples of this fact and the fact that standards are part of our everyday lives, improving the quality and ease of life. She illustrated the improvements that consensus standards could make in health care and the benefits of EHR use.

ISO/TC 215 was organized through the consensus process in 1998. The technical committee for health informatics now has eight work groups and more than 100 draft standards. Eight organizations are listed as important and active liaisons. HIMSS and ISO/TC are hosting a global summit in Japan in September to listen to HIT world leaders describe and discuss what standards are needed for global EHR interoperability, and how standards developers can meet this need. The United States should use and work in international consensus standards to become full partners in global HIT. Ms. Dickerson conveyed these recommendations for the Secretary:

  • “HHS as a Department member of ANSI could adopt and prioritize current ANSI HI standards [and] give all HHS agencies the choice to participate cheaply.”
  • “Recommend subject matter experts join the U.S. Technical Advisory Group/US delegation to ISO/TC 215 to push for global harmonization . . . [and] push the US perspective related to international voluntary consensus standards.”

Gary Dickinson, Chair, US TAG

HIMSS took over the secretariat of ISO 215 from ASTM two years ago. The US is in a strong leadership position in ISO 215, Mr. Dickinson said, with three convenors and one vice-convenor of the eight working groups. He mentioned some of the U.S. ANSI-accredited standards, and others, that have been promoted to ISO. The U.S. Technical Advisory Group (TAG) has 51 members from a range of industry, academic and government interests, providing a good balance of interests and depth of technical expertise. Mr. Dickinson presented his analysis of the strengths and weaknesses of U.S. participation and influence in the various working groups. He noted that ISO intends not to necessarily produce standards but rather, where possible, to adopt documents or standards produced by others and/or encourage other bodies to develop standards to fulfill ISO TC215 objectives.

There is growing emphasis on first establishing requirements and using these as a benchmark for achievement. This will also enable a roadmap for the future. The key issues for the TC and the U.S. TAG are to gain participation of key stakeholders and to ensure balance between producers and users/consumers (“of standards”). It also wants to ensure global relevance across “the bastions of EHR and HIT,” in emerging markets and developing countries, and in all forms of medicine (western, eastern, and alternative). Other key issues are to ensure the validation of standards and to ensure that they have testable conformance criteria.

Concerning what government can do, Mr. Dickinson said it can first insist on the following: on requirements first; that standards be developed as components of a strategic roadmap; on credible, broad-scale validation of published standards; and on standards that include testable conformance. It can ensure competent conformance measurement process, and it can help a set number of experts from diverse stakeholder groups participate in standards development activities, favoring those less able to participate otherwise.

Robert Owens, Chair, ANSI Healthcare Informatics Standards Board (HISB)

Mr. Owens observed that contrary to appearances, health care is not a unique sector of the U.S. in regard to standards. His presentation focused on how ANSI came into being in the context of the U.S. standards system, relevant legislation, HISB accomplishments, and the direction it is headed. He noted that standards development is a much more grass roots-based activity in the U.S. than in Europe, where governments tend to dictate standards.

The U.S. government has particularly used voluntary consensus-based standards since 1995. Standards organizations started in the U.S. in the late 19th century, and ANSI was formed in 1918 as a private/public partnership to manage standards administration. It is a founding member of ISO, formed in 1947. ANSI has delegated its responsibility for secretariat to HIMSS but continues oversight and review of the ISO TC 215, which was born out of ANSI HISB. The basic principles of the U.S. system include openness, balance, transparency, due process and consensus. ANSI is the coordinating body for the private sector to accredit its SDOs, which are “where all the work happens.” Not all SDOs are accredited by ANSI, but many are.

Mr. Owens reviewed the law and public policy in regard to consensus standards, citing (among others) the National Technology Transfer and Advancement act of 1995 and HIPAA as laws and OMB Circular A-119 as public policy. He noted the agencies that use voluntary consensus standards and observed that in recent years, Congress has given SDOs favored status through HIPAA and other laws. Three organizations are key within ANSI—the Homeland Security Standards Panel, the Nanotechnology Panel, and HISB (ANSI’s only board, i.e., made up only of ANSI members). ANSI HISB’s mission is to provide an environment that facilitates, coordinates, harmonizes and promotes the use of national and international healthcare informatics standards. It coordinates with the US TAG on issues regarding international standards development under ISO TC 215. Among other accomplishments, ANSI HISB has gotten the SDOs to agree on an approach, or protocol, for coordination and conflict resolution.

Discussion

At Dr. Cohn’s request, Ms. Dickerson said she would provide a list of U.S. standards and other national standards that have become ISO standards, as well as ones that are in process. Dr. Steindel noted the recommendation for an HHS representative to ANSI and the implication that federal agencies should be more involved with international standards-setting. Dr. Cohn said the Subcommittee on Standards and Security will be reviewing the recommendations and may follow up. Members had other questions and comments about international interest in standards, the aforementioned protocol, the significance of the ONCHIT RFPs, and how to get more people involved in standards development.

HEALTH STATISTICS AND NATIONAL HEALTH INFORMATION INFRASTRUCTURES —Daniel Friedman, Ph.D.

Dr. Friedman, a former NCVHS member, played a leading role in developing the NCVHS/NCHS/HHS report on 21st century health statistics and is an editor of the new book described above by Dr. Sondik. He gave a status report on his current project on the relationship of health statistics to national health information infrastructures (NHIIs). He said it is an outgrowth of the 21st c. health statistics project and report as well as the NCVHS report on the NHII. The project also can be seen in the context of the HHS Framework for Strategic Action. He invited the Committee’s reactions, comments and suggestions, especially on terminological and conceptual issues.

The project’s purpose is to develop a more specific assessment of the potential contribution of NHIIs, and especially sharable and shared EHRs, to health statistics. It will describe strategies for shared EHRs in Australia, Canada, England and New Zealand as they relate to health statistics; summarize key themes that emerged from informant interviews in those countries and the U.S.; delineate major analytic issues; and propose next steps for the U.S.

The NCVHS health statistics report stresses the themes of one-time data collection and multiple data use, and of consolidating data streams. Dr. Friedman posed the question of whether it is possible and feasible to consolidate data streams within public health and for clinical care, population health and personal health. He noted that some consider these goals unattainable. He defines EHRs as “longitudinal, hopefully cradle to grave, collection of patient-centric identifiable data that are cross-provider and cross-sector within health care, not necessarily the desk top record, and not necessarily a single record kept in a single location.” He noted that this draws on the ISO TC 215 distinction between EHR as a repository and EHR as a system. His research has involved both extensive materials review and a series of about 100 key informant interviews, which he noted were essential complements to government reports. The final report, which is in process, will put the development of NHIIs in a health system context and provide nation-specific descriptions of such topics as the locus of national responsibilities for shared EHRs, the operative EHR definition, and various structural and process matters. Other topics will be key themes from the four country interviews, themes from the U.S. and analytic issues.

Dr. Friedman briefly described his findings about England and Canada, noting that “England really does stand alone in its conceptualizations and activities relating to the use of shared EHRs for health statistics.” The English concept is of a cradle-to-grave National Health Service care record for every patient, with storage at national and local levels. The Secondary Uses Service (SUS) has been created to provide timely pseudo-anonymized patient-based data and information for purposes other than direct care; it is responsible for secondary uses of health data. England is unique in having a national patient identifier. It created an integrated model for information in 1998, in which electronic patient records (EPRs) and EHRs feed public health analyses.

In Canada, the locus of national responsibility for shared EHRs lies in Canada Health Infoway, a quasi-governmental corporation that is accountable to federal, provincial and territorial governments. Its mission is to accelerate development and adoption of EHR systems, to provide leadership, and to act as a strategic investor. It is not an implementer, nor an operational data store or source for clinical data. The Infoway investment is clinical and technological, not population health-oriented.

Turning to analytic issues, Dr. Friedman noted that by definition, health statistics involve a numerator, a denominator, and a connection between the two. Roughly speaking, the analytic issues pertain to either the numerator or the denominator or are overarching issues. One of the latter relates to the distinctions between population health and health care data. Another is the lack of clarity about how health statistics would work with shared EHRs or whether the analytic tools exist to cull data from shared EHRs. The structure of EHRs is an important factor in this regard. Another set of issues is cultural; Dr. Friedman said the point was repeatedly made to him that health care is local while shareable and shared EHR schemes are regional and national. Many physicians do not see the utility of shared EHR schemes, presenting challenges to the acceptance of using clinical data for non-clinical purposes. Consent issues are another challenge, and much more work is needed to parse the questions involved.

Discussion

Dr. Cohn said Dr. Friedman would be invited back for a more comprehensive briefing and discussion at a later date; this presentation is intended to give the Committee “a taste” of the project. He noted its relevance to the work of several NCVHS subgroups. Committee members talked with Dr. Friedman about the many potential uses of structured and standardized clinical data; the merits of identifying the dimensions of quality that could be served by the EHR; the influence of national resource limitations; and the opportunities and limitations of using secondary EHR data for research and public health surveillance, given the disparate sources.

REPORTS FROM SUBCOMMITTEES AND WORK GROUPS

Subcommittee on Privacy and Confidentiality—Mr. Rothstein

After hosting a hearing in San Francisco on August 16-17, the Subcommittee will pull together the strands of testimony it has heard over the last six months. It has identified five foundational questions that will be circulated to a broad range of prior and new witnesses, asking for input. The foundational questions will also be sent to all Committee members. The Subcommittee plans to draft a report this Fall, with recommendations, and to present it to the full Committee in November. Dr. Cohn asked that the Committee be given a preview of the report’s findings and recommendations in September.

Subcommittee on Populations—Dr. Carr

The Subcommittee is planning the revisions to and dissemination of the report approved earlier in this meeting. For the future, it will continue to look at linkages between internal and external and between health and non-health data, and at the information gaps related to health care use, financing, and so on. The Subcommittee is also considering a number of identified populations on which it may focus, and may revisit its functional status recommendations.

Subcommittee on Standards and Security—Mr. Blair

The Subcommittee will hold a hearing July 26-27 on three topics, including the idea of capturing information once at the point of care and using derivatives for non-clinical purposes. It will also follow up on its e-prescribing recommendations.

NHII Workgroup—Dr. Cohn

The Workgroup is developing a letter to update the Secretary on what it learned from its hearings on personal health records and the personal health dimension.

Quality Workgroup—Mr. Hungate

The Workgroup had a two-day hearing in June at which speakers, including Drs. Brent James, John Halamka, Don Detmer and Steve Jencks, provided key concepts for its future work. Mr. Hungate summarized the insights for the Committee and said the Workgroup was challenged to formulate a vision for using the knowledge base and the NHII to improve health quality. The Workgroup will devise its work plan in September, building on discussions at the August Executive Subcommittee retreat.

Ms. McCall shared her impression that for all the activity around health IT, as reflected in the present meeting, “something is still missing” from the elements in place for using the knowledge base to improve health. This is what the Workgroup will be trying to identify. The Committee needs to clarify what needs are greatest and what its unique contribution could be. Dr. Cohn observed that different NCVHS subgroups may have roles to play as the Quality Workgroup moves ahead; these coordination questions will be addressed at the August retreat.

Executive Subcommittee—Dr. Cohn

As noted, the Executive Subcommittee will meet in August to clarify goals for the coming year and develop the full Committee’s work plan. This involves coordinating the work plans of the various subgroups and looking at resource and staffing issues.

Dr. Cohn called attention to the fact that the current accelerated environment may make it necessary for the Executive Subcommittee or the Chair to issue communications without the usual deliberation by the full Committee. Ms. Greenberg said in such an instance, open conference calls may be used.

FUTURE AGENDAS

The following agenda items were mentioned:

September:

  • 2003-2004 report (action)
  • HIPAA report (action)
  • letter on PHR (action)
  • Privacy Subcommittee briefing
  • Letters from the Subcommittee on Standards and Security
  • Briefing on AHRQ reports on quality and disparities
  • Briefing on re-engineering of death registration

September or November:

  • follow-up presentation by Dr. Friedman

November:

  • Update on WHO classification activities by Ms. Greenberg

After entertaining suggestions for the conduct of future meetings, Dr. Cohn adjourned the meeting.

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

/s/ 9/8/2005

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Chair Date