Washington, D.C.
The National Committee on Vital and Health Statistics was convened on June 24, 2003 at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
Committee members
Absent:
Staff and liaisons
Others
ACTIONS
1. The Committee approved a letter to the Secretary concerning readiness issues related to the October implementation deadline for administrative and financial transaction standards.
2. The Committee approved a letter updating the Secretary on the Committee's work on PMRI terminology.
3. The Committee approved a letter encouraging the Department to begin a program to attempt to measure the effects of the HIPAA Privacy Rule.
UPDATE FROM THE DEPARTMENT
Mr. Scanlon reported on a recent stakeholders meeting at AHRQ headquarters, co-hosted by HHS and VA, aimed at accelerating an effort to define a functional model of standards for the electronic health record (EHR). The goal is to have a draft standard for trial use by Fall 2003. HHS will convene a national meeting on developing a national (as distinct from federal) action agenda for the NHII June 30 to July 2. Mr. Scanlon noted the Secretary's strong support for NHII objectives. The 2004 HHS budget includes several initiatives to promote and accelerate data standards and technology and NHII activities. After reporting on the status of recent NCVHS recommendations, Mr. Scanlon announced that Kathleen Fyffe will replace Stephanie Kaminsky as the lead staff for the Privacy Subcommittee.
Ms. Trudel focused on pending regulations, recent outreach efforts, and readiness issues related to the October transactions and code sets deadline. She predicted that the final provider identifier rule and proposed plan identifier rule would be published "sometime this Fall." The Department has developed a HIPAA Webcast with a security module, and it is paying a lot of attention to readiness issues around the October 16 deadline.
PRIVACY RULE COMPLIANCE AND ISSUES, INCLUDING ENFORCEMENT - Stephanie Kaminsky, OCR
The compliance date for the privacy rule was April 14, and OCR worked hard to prepare for it. The transition, Ms. Kaminsky said, has been quite smooth. She described some of OCR's outreach activities. The Department published an interim procedural rule, the first installment of the enforcement rule for all of administrative simplification, on April 17. It expires in September 2004. What is emerging is ’a voluntary compliance orientation" on the part of the Department.
In the discussion period, Mr. Rothstein inquired about plans in the Department to study the effect of the HIPAA Privacy Rule on all areas concerned, including covered entities, clinical care, research, public health, and health information privacy itself. The Privacy Subcommittee was asked to draft a letter recommending a scientific study of these questions. This letter was introduced and approved on day two of the meeting (see Actions, above).
Mr. Localio stressed the need for additional technical assistance to attorneys so their interpretations reflect the regulations more accurately. He added that the impact of the regulations "as interpreted" must be analyzed. Dr. Zubeldia expressed concern about the poor quality of the Spanish translations of patient guidances on the privacy rule.
CONSOLIDATED HEALTH INFORMATICS (CHI) - Cynthia Wark, CMS
In her brief status report, Ms. Wark stressed the evolving working relationship with the NCVHS Subcommittee on Standards and Security. NCVHS members stressed their appreciation for the Secretary's leadership in this effort, which aims to enable data interoperability across the federal health enterprise and to serve as a leader in standards adoption.
THE BASICS OF CONSENSUS STANDARDS - Melvyn Altman, Ph.D., FDA
Dr. Altman defined standards and discussed types of standards, gave a working definition of consensus, and described the major organizations in the national and international standards field with which FDA works. For the most part, the agency adopts (and sometimes requires) standards developed by SDOs and international standards organizations, rather than developing its own regulatory standards. FDA participates widely and actively in standards development organizations.
In the discussion period, Dr. Cohn expressed interest in having Dr. Altman meet with the Subcommittee on Standards and Security; Dr. Steindel asked about effective CDC participation in the ISO; and Mr. Blair thanked FDA for its participation in developing standards for patient care information for drugs.
STATUS REPORT FROM QUALITY WORKGROUP - Robert Hungate, Chair
Mr. Hungate reviewed the status of the Quality Workgroup's report development and presented its preliminary recommendations for Committee discussion. Members of other subcommittees suggested refinements and changes based on their groups' perspectives, and also reflecting the rapid changes underway in the information infrastructure. The Quality Workgroup was asked to collaborate with the Populations Subcommittee in developing its recommendations on race and ethnicity data. The Committee also considered developing a separate letter discussing this area in greater detail. Dr. Lumpkin said the recommendations of an IOM panel on a related topic, expected in October, should be useful. Dr. Zubeldia agreed to assist the Workgroup in crafting recommendations in areas related to HIPAA transaction standards. Mr. Hungate was asked to share working drafts of the Quality Workgroup report with both the Populations and Standards Subcommittees. Members agreed to use the full Committee's September meeting to work further on the recommendations, with the goal of having a finalized and approved report in November.
SUBCOMMITTEE ON STANDARDS AND SECURITY - Simon Cohn, M.D.
Dr. Cohn presented two letters to the Secretary, drafted by the Subcommittee, for review. The first deals with readiness issues related to the October implementation deadline for administrative and financial transactions. It was read, thoroughly discussed, and sent back to the Subcommittee for revision. On day two, the revised letter was presented, slightly revised further, and approved.
The second letter updates the Secretary on the Committee's PMRI terminology work and expresses appreciation for his leadership in "the new momentum to adopt clinical standards." This letter received minor modifications, which the Subcommittee later incorporated into a version approved by the Committee on day two of this meeting.
The final versions of both letters are posted on the NCVHS Web site.
HHS GATEWAY TO DATA AND STATISTICS ON THE WEB - Jim Scanlon, ASPE
Mr. Scanlon demonstrated the Department's new Web-based Data Council Gateway to Data and Statistics, <aspe.hhs.gov/statinfo>. The content of the site is largely quantified statistical information produced by HHS agencies through their various missions. The Gateway also can be accessed through the Web sites of NCVHS, HHS and the Data Council, and it has links to many sites. The search engine, DataFinder, allows searches using either pre-selected terms or a range of ordinary key words. It offers the capacity for advanced, multifaceted searches for particular combinations of data plus the ability to build tables using the data.
NCVHS members extended praise and congratulations for this accomplishment. In response to Mr. Scanlon's request for suggestions to help make the Gateway more useful, they offered a few ideas.
GALLUP SURVEY ON FEDERAL ADVISORY COMMITTEES - Marjorie Greenberg, NCVHS Executive Secretary
Ms. Greenberg reported on the Federal Advisory Committee Stakeholder Engagement Survey conducted by Gallup in the first half of 2003. The mail survey was done under contract to the Office of Governmentwide Policy of the GSA, which tracks all federal advisory committees, to provide a standardized way of assessing performance and effectiveness.
NCVHS results were generally very positive. Of the factors viewed as most highly correlated with success, NCVHS members ranked these elements as the most positive: having a positive influence within its area of expertise, helping build trust in government, making recommendations that respond to the agency's needs, having a clearly defined mission and goals, and having fair operating procedures and guidelines and well run meetings.
REPORTS FROM SUBCOMMITTEES AND WORKGROUPS
The respective chairs of the following groups delivered status reports. Please see the last few pages of the Detailed Meeting Summary for these brief reports. For the starred items, refer to the Actions section.
HIPAA REPORT TO CONGRESS - Mr. Scanlon
In view of the impending October 16 implementation deadline, the Committee agreed to extend the period covered by the next report to Congress through October. A draft report will be submitted to the Committee for action at its November meeting.
FUTURE AGENDAS
(See detailed summary.)
ORGANIZATIONAL ISSUES - Dr. Lumpkin
In preparation for the afternoon's Executive Subcommittee meeting, Dr. Lumpkin asked members to raise any concerns about organizational issues. After discussion, Mr. Houston agreed to take the lead in ensuring that security issues, which bridge the domains of the Privacy and Standards subcommittees, are given their proper due. The group also briefly discussed ways of improving internal communication.
DAY ONE
CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA
Dr. Lumpkin called the meeting to order and asked all present to introduce themselves. He commented on the recent progress in many areas of the Committee's work, notably the implementation of the privacy regulations and the forthcoming NHII summit.
UPDATE FROM THE DEPARTMENT
James Scanlon, ASPE
Mr. Scanlon confirmed that there is considerable progress on clinical data standards, privacy, and NHII issues. He reported on a recent stakeholders meeting at AHRQ headquarters, under the auspices of HHS and VA, to accelerate an effort to define a functional model of standards for the electronic health record (EHR). The goal is to have a draft standard for trial use by Fall 2003. Mr. Blair explained that they are aiming for a normative standard for trial use, which requires a lower degree of consensus (60% approval) and therefore can be achieved sooner through the HL7 process.
HHS will convene a national meeting on developing a national (as distinct from federal) action agenda for the NHII June 30 to July 2. Secretary Thompson will participate, and Dr. Lumpkin is giving the keynote address. Participants will work on actions in eight areas, including research and population health, homeland security, consumer health, privacy, safety and quality, architecture, financial incentives and standards and vocabulary. Mr. Scanlon noted the Secretary's strong support for NHII objectives, as reflected in the HHS strategic plan. The Secretary has established an HHS internal interagency council on the application of health information technology, to coordinate all HHS activities in this area.
The 2004 HHS budget includes several initiatives to promote and accelerate data standards and technology and NHII activities. Mr. Scanlon described some of these initiatives in ASPE and AHRQ, stressing that many NCVHS ideas are reflected in the budget process and in HHS strategic plans.
He had these reports on the status of recent NCVHS recommendations:
Mr. Scanlon announced that Kathleen Fyffe will replace Stephanie Kaminsky as the lead staff for the Privacy Subcommittee. He praised Ms. Kaminsky for the excellent support she gave to the Subcommittee during a challenging time, just preceding implementation of the privacy regulations.
Karen Trudel, CMS
Ms. Trudel focused on pending regulations, recent outreach efforts, and readiness issues related to the October transactions and code sets deadline.
Having delayed the claims attachments proposed rule, CMS is awaiting a report from HL7 on a proposed new standard. The Department is working on several "thorny" enforcement issues related to transactions, code sets, privacy and security. Ms. Trudel predicted that the proposed rules on claims attachments and plan identifier and final rule on provider identifier would be published "sometime this Fall." In addition, a "fairly minor" transaction and code set modification rule is scheduled to come out in early 2004.
The Department has developed a HIPAA Webcast with a security module, which is free of charge and very informative. Ms. Trudel said there is a lot of attention to the readiness for the transactions and code sets deadline of October 16. Some mitigations have been suggested to the Secretary, but no decision has been made to date. (See related NCVHS agenda item.)
PRIVACY RULE COMPLIANCE AND ISSUES, INCLUDING ENFORCEMENT - Stephanie Kaminsky, OCR
The compliance date for the privacy rule was April 14, and OCR worked hard to prepare for it, not knowing what to expect when it went into effect. The transition, Ms. Kaminsky said, has been quite smooth. The regional offices are fielding complaints¾637 to date, of which 260 have been accepted for investigation. OCR is working out a referral system to the Justice Department for complaints about allegedly criminal conduct.
OCR is also continuing its outreach activities, which include a toll-free assistance hotline with operators able to answer frequently asked questions. Callers with more complex questions can leave a message at another number and later receive an answer. Since April 1, OCR has received 5,000 of these more detailed calls and responded to 98 percent of them. The Department has detailed staff to OCR to assist with this effort. Several publications have also been released, including ones on research and public health in relation to the privacy rule. The Web site has received roughly 750,000 hits in recent months.
The Department published an interim procedural rule, the first installment of the enforcement rule for all of administrative simplification, on April 17. The comment period has just ended. When issued in its entirety, the enforcement rule will set forth procedural and substantive requirements related to violations of HIPAA provisions. The interim procedural rule will expire on September 16, 2004.
Ms. Kaminsky stated that what is clearly emerging is "a voluntary compliance orientation" on the part of the Department. OCR hopes to handle most complaints by providing technical assistance to covered entities, to help them voluntarily comply.
Discussion
Mr. Blair pointed out that in the original thinking on the need for privacy protections, a major concern of the public was that employers might have inappropriate access to their health care information. He asked whether the complaints since April 14 reflected this concern. Ms. Kaminsky said her informal impression was that this is not a large area of complaint.
Mr. Rothstein prefaced his remarks with an expression of appreciation, later echoed by others, for Ms. Kaminsky's service to the Subcommittee on Privacy and Confidentiality. In response to Mr. Blair's question, he said HIPAA does very little to address the problem of employer access to health records; the disclosure of an individual's entire medical record to an employer is lawful under HIPAA as long as there is a valid authorization. Of the states, only California and Minnesota have statutes to address this issue. He then asked about plans in the Department to study the effect of HIPAA on all areas concerned, including covered entities, clinical care, research, public health, and health information privacy itself.
Ms. Kaminsky said she was aware of no plans to conduct such a study, which Mr. Rothstein added may belong in an agency other than OCR. Dr. Lumpkin asked the Privacy Subcommittee to draft a letter recommending a scientific study of these questions. (See action items.) Mr. Scanlon said ASPE is looking at evaluation methodologies.
Mr. Localio stressed the need for additional technical assistance to attorneys so their interpretations reflect the regulations more accurately. He recommended that any research on impact look at "the regulations as interpreted," and he expressed concern that health care institutions' consent and authorization materials are not being written in a way that patients can understand. Ms. Kaminsky described current resources aimed at clarifying communication with consumers. They include a "plain English" guide by HRSA and a thesaurus that translates complicated privacy words. (Dr. Zubeldia later called for "plain non-English" as well, remarking that the Spanish translations of notices are "absolutely unreadable.")
Mr. Houston noted that statistics on the nature of complaints and questions will be useful in characterizing problems ¾ e.g., the breakdown between hospital and physician-office complaints. He also suggested that OCR send out periodic updates containing new guidances and FAQs. He and other members made other suggestions, which Ms. Kaminsky welcomed and took note of.
Dr. Harding commented on the "eerie silence during the last two months" since the compliance date, with people signing the acknowledgements without reading them. He cautioned that there may be more complaints ahead, once people realize what is happening.
CONSOLIDATED HEALTH INFORMATICS (CHI) - Cynthia Wark, CMS
Ms. Wark, the technical lead for the CHI initiative, appeared on behalf of Jared Adair, the project manager. She reported that a noteworthy new development is the relationship forged with and the advice received from the NCVHS Subcommittee on Standards and Security. The goals of CHI are to enable data interoperability across the federal health enterprise and to serve as a leader in standards adoption. CHI presented information about the scope and objectives of the effort at a May 20 discussion with the Subcommittee, and it is developing working relationships with SDOs. The Subcommittee has asked for a standardized format for receiving information from the CHI Council, and CHI staff are working on that format.
With respect to vocabulary domains, teams are at work on medications, interventions and procedures, immunizations, demographics, clinical encounters, and lab results. At least eight additional teams are to be launched, including one on population health
Discussion
Several NCVHS members expressed the Committee's pleasure at seeing federal leadership on informatics and standards development, as NCVHS has urged, and at being partners in that process. They acknowledged the Secretary's support of these initiatives. Ms. Wark noted that CHI is building on previous work done by the Subcommittee on Standards and Security, and she stressed that CHI is adopting standards, not developing them.
THE BASICS OF CONSENSUS STANDARDS - Melvyn Altman, Ph.D., FDA
Dr. Altman is the Associate Director for Standards Policy in the FDA Office of Science and Technology, Center for Devices and Radiological Health. He defined standards as "anything taken by general consent as a basis of comparison or approved model, serving as a basis for measure, value, comparison or judgment" and cited some standards organizations FDA is involved with. He defined the key elements of consensus as openness to all interested parties, balance, due process, and an appeal mechanism, noting that these are what give consensus standards credibility. He added that "consensus" does not require unanimity, and that the mirror side of consensus standards development is conformity assessment.
The use of consensus standards by federal agencies is codified and called for in the National Technology Transfer and Advancement Act (NTTAA). If they are not using consensus standards, agencies are required to say why not. FDA and other federal agencies are members of the Interagency Committee on Standards Policy.
Standards fall into the categories of regulatory (mandatory), consensus (voluntary), and proprietary (corporate, internal). ANSI (the American National Standards Institute) has developed a process for trial use of draft standards. Dr. Altman's division of FDA has at most a dozen regulatory standards because it is difficult and costly to develop them. Its general approach is to let the SDOs develop consensus standards which it then uses, and in some cases requires. Standards can also be categorized as either horizontal (generic, e.g., a standard for sterilization) or vertical (product-specific, e.g., for heart valves). Standards address several levels: terminology, parametric (defining important variables and test methods), and performance, the last being the highest level of standard.
In the U.S., most standards development is done under the umbrella of ANSI, which has 4,000 members and an estimated 4 million potential participants. The committees that do the work typically have 20 members. Internationally, there are three main organizations: the International Organization for Standardization (ISO), the International Electrotechnical Commission (IEC), and the ITU (which deals with telecommunications). ANSI is the U.S. voting representative on all three, delegating responsibilities in various areas to U.S. technical advisory groups (TAGs), which accredit delegations to the international organizations. Consensus is nation-based at the international level; within the U.S. all stakeholders can participate through the TAGs, but that is not the case in all countries.
FDA participates widely and actively in standards development organizations. Since 1997 it has been statutorily enabled to recognize standards and replace regulatory requirements with standards. Part of clearing devices for marketing involves ensuring that they conform to recognized standards, which are part of an expanding list that currently numbers 600.
Discussion
Dr. Cohn expressed interest in having Dr. Altman meet with the Subcommittee on Standards and Security. In response to a question, Dr. Altman said FDA is selective about which ANSI standards it uses, following a standardized process. Asked about international standards, he said the NTTAA encourages the use of international standards by all federal agencies. In the U.S., agencies can use standards developed by organizations not accredited by ANSI as long as they embody all the elements of consensus; internationally, FDA only uses ISO and IEC standards.
Dr. Steindel expressed concern about the fact that the U.S. has only a single vote in the ISO, raising doubts at CDC about getting involved internationally. Asked what he would advise health care people to do to have an impact at that level, Dr. Altman assured Dr. Steindel that in his experience, federal agencies and departments that get involved in international standardization carry a lot of weight; he encouraged CDC's participation.
Mr. Blair expressed appreciation for the FDA's contributions to the development of standards for patient care information for drugs.
STATUS REPORT FROM QUALITY WORKGROUP - Robert Hungate, Chair
Mr. Hungate noted that the current members of the Quality Workgroup lack institutional memory about the group's prior work, and that virtually all testimony on the data issues in quality measurement was taken by the full Committee. He also commented on the many overlaps between quality measurement and the work of all three NCVHS subcommittees and the NHII Workgroup. All of these factors make the full Committee's participation in framing a final report and recommendations on this topic essential. He referred the group to preliminary recommendations included in a briefing paper submitted to the Committee in advance of this meeting, and he invited comments and suggestions.
Dr. Cohn urged the Workgroup to make sure its recommendations are timely in view of changes brought about by HIPAA as well as the recommendations and activities of other NCVHS groups.
The group engaged in a long discussion about existing and needed mechanisms for collecting data on race and ethnicity, to enable attention to quality of care issues related to health care disparities. Dr. Mays stressed the importance of reflecting the work the Committee has done on subpopulations. One topic of discussion was issues related to the 837 and implementation guides. The group considered the perennial question of whether race and ethnicity should be collected as part of enrollment or encounter data. Ms. Greenberg reviewed the arguments in favor of the encounter form, including the facts that health services researchers and others have no access to enrollment data and that the absence of patient identifiers makes it impossible to link files. Several members favored having the recommendations stress desired data outcomes (e.g., adequate data on race/ethnicity), with a range of possible ways to achieve them.
Dr. Cohn commented on the relevance of transaction standards to this issue and said he would ask Dr. Zubeldia to assist the Quality Workgroup in developing its recommendations. Mr. Scanlon observed that issues related to race and ethnicity measurement and data standards must be approached in broad and sophisticated terms. He suggested a general statement in the quality report about the need to improve data on race and ethnicity in a standardized way.
Given the complexity of the issue of race and ethnicity data with respect to quality of care, Dr. Mays proposed that the Quality Workgroup report avoid going into detail on these matters and that the Committee write a separate letter discussing this subject and making appropriate recommendations. Ms. Greenberg noted that the Populations Subcommittee has received the most recent testimony on this matter, and she recommended a joint effort on this subject by the two groups. Other members supported this idea and stressed that developing these recommendations will require a full-Committee discussion at a regularly scheduled meeting. Dr. Lumpkin said the recommendations of an IOM panel working on a related topic, expected in October, should be useful.
Mr. Hungate stimulated a discussion of risk-adjusted outcome measures and the relative merits of administrative and clinical data sources. Dr. Lumpkin suggested that the Quality Workgroup's report address the issues related to the boundaries between clinical and administrative data. Dr. Cohn suggested looking at the current CMS demonstration project on risk adjustment for Medicare Plus Choice members. Dr. Huff raised the issue of claims attachments, and pointed out that the infrastructure for sending clinical data around is evolving and maturing.
Ms. Greenberg observed that several "thorny" issues of long-time concern to the Committee (e.g., race/ethnicity data, single procedure classification, patient identifiers) are emerging in the context of the quality measurement report. All were brought forward in the testimony as problems that are inhibiting quality assessment. The Committee is on record as having made recommendations on some of these.
In view of these large issues, members agreed to use the September meeting as an opportunity for further work on the recommendations, with the goal of having a finalized and approved report in November. Mr. Blair observed that the first step is for the Committee to reach agreement on what the issues or problems are. Once the Quality Workgroup determines what information is needed, Dr. Zubeldia agreed to assist the Workgroup in crafting recommendations about recommended remedies in areas related to HIPAA. Mr. Hungate was asked to share working drafts of the Quality Workgroup report with both the Populations and Standards and Security Subcommittees, to lay the groundwork for discussions at the September full Committee meeting.
SUBCOMMITTEE ON STANDARDS AND SECURITY - Simon Cohn, M.D.
Dr. Cohn presented two letters to the Secretary, drafted by the Subcommittee, for review by the Committee. The first deals with readiness for implementing the administrative and financial transaction standards. In essence, the letter recommends that the October 16 deadline not be extended. It also recommends a six-month period during which people can accept the old transactions while trading partners come into complete compliance, and in which trading partners can agree to subsets of compliant transactions.
Dr. Cohn read the draft letter, pausing periodically for comments. The chief focus of discussion concerned the wording for the Committee's recommendations related to differences in the expected speeds of coming into compliance between payers and providers, especially small providers. The principles at stake include not penalizing those who come into compliance in a timely manner, while initially building flexibility into enforcement to allow for a variety of cases and solutions.
Members also offered editorial suggestions. The letter will be revised by the Standards Subcommittee, reflecting the foregoing discussion, and presented for approval on day two of this meeting.
Dr. Cohn then read the second letter drafted by the Subcommittee. It updates the Secretary on the Committee's PMRI terminology work and expresses appreciation for his leadership in "the new momentum to adopt clinical standards." The Committee plans to present the initial set of core PMRI terminologies, selected through the process described in this letter, at the end of September 2003.
Mr. Blair explained that one purpose of the letter is to be useful to CHI in July and August of this year, as part of a set of deadlines set by that organization. There were no substantive edits to the document, which the Subcommittee will revise and submit for approval in day two of this meeting.
The Committee then recessed into subcommittees and workgroups, to reconvene the following day.
DAY TWO
CALL TO ORDER
Dr. Cohn called the meeting to order on behalf of Dr. Lumpkin, who returned to the meeting during Ms. Greenberg's presentation (below). Those present introduced themselves.
HHS GATEWAY TO DATA AND STATISTICS ON THE WEB ¾ Jim Scanlon, ASPE
Mr. Scanlon demonstrated the Department's new Web-based Data Council Gateway to Data and Statistics. He invited reactions and suggestions to help make the Web site more useful. The content of the site is largely quantified statistical information produced by HHS agencies through their various missions.
There are some case studies and qualitative information.
To advance the Department's goal of providing timely and reliable information to decision-makers in a manner that protects privacy and confidentiality, the Data Council was asked to pull together a user-friendly Web site for the Department's vast data and statistical holdings, which previously had been difficult to get to. The idea was to build upon agency Web sites, not to create a new parallel process, so what was created was an introductory gateway <aspe.hhs.gov/statinfo>. The gateway can also be located through the Web sites of NCVHS, HHS and the Data Council, and it has links to many sites.
The key features of the Web site, which Mr. Scanlon demonstrated, include (among other features):
In conclusion, Mr. Scanlon reiterated his request for advice on how to improve the Web site.
Discussion
Committee members prefaced their remarks with congratulations and praise for this accomplishment. Dr. Mays suggested giving access to presentations by staff, which would add the Department's interpretative resources to the Web site. She also suggested adding PsychInfo and Sociology Abstracts to the scientific literature resources. Mr. Scanlon said the initial rule of thumb was to confine the Web site to site links with a direct link to HHS. Dr. Steinwachs suggested adding a link to the VA for veteran data.
GALLUP SURVEY ON FEDERAL ADVISORY COMMITTEES
Marjorie Greenberg, NCVHS Executive Secretary
Ms. Greenberg reported on the Federal Advisory Committee Stakeholder Engagement Survey conducted by Gallup in the first half of 2003. The mail survey was done under contract to the Office of Governmentwide Policy of the GSA, which tracks all federal advisory committees, to provide a standardized way of assessing performance and effectiveness. 365 of the 470 advisory committees participated, involving nearly 5,000 respondents, almost a quarter of whom were from HHS. The governmentwide response rate was around 50 percent. There were 14 NCVHS participants, including Ms. Greenberg and current and former members. Gallup defined stakeholders as Committee members, designated federal officials, and decision-makers (those advised by the advisory group, none of whom were surveyed for NCVHS).
Gallup trained advisory committee staff in interpreting the results. NCVHS results were generally very positive. Overall HHS and governmentwide results were slightly lower, but still positive. Of the factors viewed as most highly correlated with success, NCVHS members ranked these elements as the most positive: having a positive influence within its area of expertise, helping build trust in government, making recommendations that respond to the agency's needs, having a clearly defined mission and goals, and having fair operating procedures and guidelines and well run meetings.
Scores in the same high-priority category that suggest room for improvement include these: the effective use of Committee recommendations (other advisory committees had the same concern), helping make the agency more effective, and having a positive impact on the public. Lower priority areas that were identified by members as needing improvement include having the right mix of members, getting more feedback from HHS on recommendations, better preparation by members for meetings, and access to more resources.
Gallup provided a comparison of NCVHS with agency and governmentwide scores in the areas of people, process, and outcome. For the most part, the Committee's satisfaction scores exceed those of both other groups. However, the scores for having the right mix of individuals on the Committee and having the recommendations used effectively were both relatively low.
Ms. Greenberg concluded that the survey findings were valuable both because "the Committee ended up looking good" and because it identified areas for improvement.
Discussion
Noting that the Committee serves a "coupling" function between the government and the public Dr. McDonald suggested that another survey be taken of the Committee's public constituents.
Mr. Scanlon stated that the Department regards NCVHS as a "major asset and resource, capable of very sophisticated and nuanced and realistic recommendations." It is generally regarded as one of best performing and most hardworking advisory committees and the source of useful recommendations.
REPORTS FROM SUBCOMMITTEES AND WORKGROUPS
Executive Subcommittee: Dr. Lumpkin
The Executive Subcommittee will discuss organizational issues and others at an afternoon meeting following this one.
NHII Workgroup: Dr. Lumpkin
The Workgroup is holding a hearing on August 7 on the personal health dimension. It is considering ways to monitor the implementation of the NHII recommendations, and will be developing a workplan for the next one to two years.
Subcommittee on Standards and Security: Dr. Cohn
Dr. Cohn presented the revised versions of the letters discussed the previous day. After thanking Mr. Blair and Subcommittee staff for moving this project forward, he read the letter on the PMRI. By unanimous vote, the letter was approved.
On the second letter, regarding the October 16 implementation deadline, Dr. Cohn said the Subcommittee had rewritten most of the recommendations following yesterday's discussion.
Before proceeding, audience member Tom Gilligan of the Association for Electronic Health Care Transactions was given permission to speak. He commented on the previous day's discussion of compliance issues, especially those with an impact on payment of providers, and suggested a few modifications to the Committee's letter.
Dr. Cohn acknowledged Mr. Gilligan's comments and the need in future meetings to continue to monitor how things are going. He then presented the revised letter on October 16 readiness issues, reading read aloud the revised recommendations. Members considered several proposed modifications, particularly related to issues of enforcement and flexibility. The letter, as revised, was then unanimously approved.
The Subcommittee will hold hearings on August 19-21, October 21-22, and December 9-10. Dr. Cohn said future Subcommittee agendas will include updates on issues related to implementation of the administrative and financial transaction standards. Dr. Lumpkin observed that the Committee will continue to monitor HIPAA implementation, so there will be many opportunities for input.
Subcommittee on Privacy and Confidentiality: Mr. Rothstein
Mr. Rothstein declared a potential conflict of interest in that he is submitting a grant application to CDC to fund research on the effect of the HIPAA privacy rule on public health reporting.
He then read a draft letter encouraging the Department to begin a program to attempt to measure the effects of HIPAA. The letter leaves the question of how to carry out the recommendation to the Department's discretion. After a few edits were suggested and accepted, the letter was unanimously approved, as revised.
Mr. Rothstein reported that the Subcommittee plans a two-day hearing on the security rule in the Fall, jointly sponsored with the Subcommittee on Standards and Security. It also is considering a series of hearings, probably in November, to assess problem areas in HIPAA Privacy Rule compliance.
Subcommittee on Populations: Dr. Mays
The Subcommittee had reviewed the Secretary's response to a NCVHS letter on the potential budget impact on the NHIS; considered the best ways to get feedback from NCHS about its activities; and reviewed the findings in recent Subcommittee hearings and their implications for recommendations. The Subcommittee plans to submit its report on population-based hearings at the September meeting.
Dr. Mays stated her intention to recommend ways the Committee can handle topics that cut across subcommittees. In response to a question, she said the Subcommittee will be looking at priorities and how to broaden its agenda to include mental health and functional status topics that have recently been beyond its capacities to handle.
A hearing is planned for November on Asian, Native Hawaiian, and other Pacific Islander populations.
Workgroup on Quality: Mr. Hungate
At its morning meeting, the Workgroup was augmented by Dr. Zubeldia and Ms. Trudel, who are helping develop the recommendations in their areas of expertise. The Workgroup organized its recommendations into a more workable framework. Its members plan to attend the August 7 meeting on the personal health dimension and may hold a Workgroup meeting the following day. The group does not expect final approval of its report before November.
HIPAA REPORT TO CONGRESS-Mr. Scanlon
Staff have been drafting the 2002-2003 version of this report. In view of the impending October 16 implementation deadline, the Committee agreed to extend the period covered through October. A draft report will be submitted to the Committee for action at its November meeting.
FUTURE AGENDAS
These items were mentioned for the September agenda:
This item was identified for the November meeting in addition to those mentioned above:
NCVHS ORGANIZATIONAL ISSUES - Dr. Lumpkin
In preparation for the afternoon's Executive Subcommittee meeting, Dr. Lumpkin asked members to raise any concerns about organizational issues. He added that the Subcommittee is well aware of the difficulties caused by having different subgroups meet at the same time. The possibility of having one three-day meeting a year was discussed and weighed against the already considerable demands on members' time.
Noting that he wants to be sure security is given its proper due, Mr. Houston raised questions about the proper domain for the HIPAA security rule, given that it cuts across the Privacy and Standards subcommittee domains. In the discussion, Mr. Houston was asked, and agreed, to take the lead on these activities. Members did not favor creating a new group with this focus because of the limited number of members and the magnitude of their existing commitments.
The Committee discussed possible electronic means of improving internal communication and providing access to drafts to members of other subcommittees and workgroups.
Dr. Lumpkin then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ John R. Lumpkin 9/12/2003
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Chair Date