Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

September 16-17, 2008

Hubert H. Humphrey Building
Washington, D.C.

Meeting Minutes

 


The National Committee on Vital and Health Statistics was convened on September 16-17, 2008 at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:

 

Committee members

Harry Reynolds, Chair

Jeffrey Blair, M.B.A.

Justine M.Carr, M.D.

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

Larry A. Green, M.D.

Mark Hornbrook, Ph.D.

John P. Houston, J.D.

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

Blackford Middleton, M.D.

Sallie Milam, J.D.

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

William J. Scanlon, Ph.D.

Donald M. Steinwachs, Ph.D.

Walter Suarez, M.D.

Paul Tang, M.D.

Judith Warren, Ph.D., R.N.

 

Lead Staff and liaisons

Marjorie Greenberg, NCHS/CDC, Executive Secretary

James Scanlon, ASPE, Executive Staff Director

Debbie Jackson, NCHS

Jorge Ferrer, M.D., VA liaison

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

Steve Steindel, Ph.D., CDC liaison

Jim Lepkowski, Ph.D., NCHS BSC liaison

 

Others (not including presenters)

Debbie Jackson, NCHS

Katherine Jones, NCHS

Marietta Squire, NCHS

Missy Jamison, NCHS

Katie Carl, National Cancer Registrars Assn.

Allison Viola, AHIMA

David Connolly, Capitol Associates

Jeanette Thornton, AHIP

Amanda Cash, HRSA

Frank Kyle, American Dental Assn.

Sheila Dwyer, American Optometric Assn.

Carol Bickford, American Nurses Assn.

Michael DeCarlo, BlueCross BlueShield Assn.

Paul Gammill, Synectics

Suzee Burke Bebee, ASPE

Dan Rode, AHIMA

Adim Birnbaum, BlueCross BlueShield Assn.


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

 

EXECUTIVE SUMMARY

 

ACTIONS

 

  1. The Committee passed a resolution authorizing thank you letters to be sent to Dr. Farquhar and Dr. Steindel on behalf of the Committee, on the occasion of their departure from their staff and liaison positions (respectively) with NCVHS.

 

  1. The Committee passed a motion authorizing the Subcommittee on Standards  to further revise its letter to the Secretary on controlled substances and e-prescribing, based on the Committee’s discussion at this meeting, and it authorized the Executive Subcommittee to approve the final version.

 

Departmental Update

  • Data Council—Mr. Scanlon
  • CMS Update—Ms. Trudel

 

After briefly reviewing Departmental activities and prospects related to standards, priorities, and budget, Mr. Scanlon described several ASPE studies that are now under way. In the discussion, the group focused on technology adoption issues among health care providers.

 

Ms. Trudel reported on CMS’s EHR pay for performance demos, PHR demonstration pilots, e-prescribing, a number of standards-related activities, and the transition to ICD-10 and HIPAA 5010. PHRs and the final topic generated considerable discussion with Committee members, who also expressed interest in the findings on workforce and education and asked for regular updates. Mr. Reynolds called the Committee’s attention to its role in these developmental processes, and urged that they stay focused on how NCVHS can help “drive the nation forward in a standard way.”

 

Standards Subcommittee Letter on e-Prescribing Standards and DEA

 

Mr. Blair noted that controlled substances, representing 12-15 percent of all prescriptions, were one of the gap areas in the e-prescribing standards adopted in the last round. The Standards Subcommittee has developed a letter reiterating its recommendations on this subject. The draft letter was discussed on day one and subsequently revised by the Subcommittee. The revised version, presented on day two, was discussed further. By a motion, the Committee asked the Subcommittee to revise it again based on this discussion, and authorized the Executive Subcommittee to act on the final version.

 

ONC Updates

—Dr. Charles Friedman, Dr. Mary Jo Deering, and Dr. Morris Landau

 

Dr. Friedman reported on the Federal HIT Strategic Plan for 2008-2012. It has two goals, eight objectives, and 43 strategies, each with a milestone, for coordinated Federal activities covering all Federal agencies with an active HIT program. It was developed in a highly collaborative manner to create a single infrastructure for HIT objectives, and released on June 3, 2008, to provide a way to measure progress. Mr. Reynolds offered the Committee’s help in moving the agenda forward, and Dr. Francis offered the Privacy and Security Subcommittee’s help on the privacy framework.

 

Regarding the NHIN, Dr. Friedman reported that trial implementations are well under way. The NHIN Cooperative, an informal consortium, was created to implement tests and demonstrate information exchange core services. The first demonstration is the week of September 23, and the NHIN Forum will conduct the second phase of the trial implementation on December 15-16. He stressed that this is an evolutionary process; at this stage, ONC wants to embrace diversity and be inclusive.

 

Dr. Deering reported on the transition to and status of AHIC 2.0, whose goals are to promote interoperable health information exchange and to oversee and facilitate the NHIN. An “army of volunteers” helped plan the transition. Bylaws are under development and will be vetted in October, and a Board of Directors has been assembled and will first meet on October 27.

 

Dr. Landau reported that ONC is working on a Privacy and Security Framework.

 

PHR Technology: Practical Examples from the Field

—Dominic Wallen, Health Trio

 

Mr. Reynolds explained that Mr. Wallen was asked to present, not to favor a particular application but to give the Committee an idea of industry progress. This shows one vendor’s approach to handling sensitive information, an issue with which NCVHS has struggled. Mr. Wallen described his company’s approach to encoding data with SNOMED, “tying it together,” and making it available to multiple users including patients, while giving patients considerable control over protecting sensitive information. This prompted extensive discussion with NCVHS members about crosswalks among coding systems, the pros and cons of sequestering personal health information, what is required to make PHRs useful to patients and to protect PHR data, and other topics.

 

Update: Current HIT Realities in the States

—Kory Mertz, National Conference of State Legislatures

 

After providing some background on NCSL, which helps state legislative staffs by monitoring trends, supporting innovation, and in other ways, Mr. Mertz said the states view HIT as a vital tool and several are integrating HIT efforts into their health care reform initiatives, partly to get costs under control. He discussed five key trends across the states: e-prescribing, updating privacy laws to facilitate health information exchange, targeted financing initiatives, promoting the use of standards-based HIT systems, and advancing adoption and use.

 

In the discussion, NCVHS members had comments and questions about what states are doing on a business model for HIE (Mr. Mertz said states are as “stumped” as others about this) and to sustain their vital statistics capacity. Ms. McCall pointed out the opportunities for NCVHS and NCSL to work together to optimize the uses and stewardship of health information as well as the value proposition for HIT and HIE.

Data Stewardship Framework: Dr. Carr and Dr. Tang

 

The purpose of this session was to orient members to a schematic and lay the groundwork for breakout sessions and future planning. Dr. Carr and Dr. Tang explained that they developed the schematic as a conceptual framework around the topic of data stewardship, a dominant recent theme, to help NCVHS subcommittees think about how (or whether) to work on it collaboratively. They explained the diagram and noted that the structure could be adapted to other topics, as well.  Committee discussion ranged across content and process questions; and much of the discussion, as intended, concerned the process flowing from framework. Ms. Greenberg encouraged members also to consider alternative topics (other than data stewardship) that could provide a “galvanizing thematic effort” for crosscutting work by the Committee that could contribute to the NCVHS 60th Anniversary observations.

Subcommittee Reports

 

Mr. Reynolds stressed that the focus, here and in forthcoming Executive Subcommittee meetings, is on planning activities through which the Committee can make a difference in the next 18 months. (Please see the detailed summary below for these brief reports.)

NCHS/BSC Update: Bill Scanlon and Dr. Lepkowski, BSC liaison

 

This briefing focused on the NCHS budget and its consequences. Because there has been deterioration over time, the Board of Scientific Counselors is concerned about erosion of the integrity of surveys and vital statistics—this at a time when solid information is needed to guide and assess health reform efforts. A broad audience needs to hear this message, including OMB, the White House, and Congress.

60th Anniversary: Ms. Greenberg

 

The celebration of NCVHS’s 60th anniversary will take place in June 2010 (date not yet set) at the National Academy of Sciences. Ms. Greenberg reviewed the special activities and documents that also are being planned to mark the anniversary, including a ten year retrospective that builds on the 50-year history. She noted the synergy with these activities of the WHO Collaborating Center for the Family of International Classifications for North America, and encouraged members to think of synergies with their own organizations’ events. Members discussed the importance of effective marketing and communications to acknowledge NCVHS achievements over six decades and publicize these events and activities.

 


DETAILED SUMMARY

—DAY ONE—

 

Call to Order, Welcome, Introductions, Agenda Review

 

Mr. Reynolds called the meeting to order. Following introductions, he welcomed the four new members and thanked outgoing staff member MaryBeth Farquhar and retiring CDC liaison Steve Steindel for their service to the Committee. The Committee passed a resolution that thank you letters would be sent to Dr. Farquhar and Dr. Steindel on behalf of the Committee. Mr. Reynolds then reviewed the agenda and the purpose of various agenda items.

 

Departmental Update

  • Data Council—Mr. Scanlon

 

HHS has issued notices of proposed rule-making on ICD-10 and on the implementation of the 5010 suite of standards. On the policy front, Mr. Scanlon called attention to the Secretary’s nine priority areas for health and the Department’s strategic plan, with HIT and data policy as important elements of both. A number of pilots and demos are under way or planned, some of which were originally recommended by NCVHS.  Several HIT bills are pending but unlikely to pass in this legislative year; however, interest is likely to continue in the next Congress. There is still tension on the privacy side. On the budget, FY09, which begins in October, will probably have a continuing resolution which means a steady level of funding. The President’s 2009 budget contains several increases for population statistics. The new President will submit the FY10 budget after the election, in a “compressed budget period.”

 

Mr. Scanlon briefed the Committee on several ASPE studies. It is evaluating and assessing PHRs in the Medicare program, on both the fee for service and health plan sides, and it is looking at further pilots. In addition, it is assessing HIT in the health safety net, working with HRSA, and it has completed a study of HIT workforce needs, capacities and competencies. He offered a more in-depth briefing, on request. ASPE has added questions to the National Health Interview Survey aimed at how consumers use technology to get health information and how they use the information. These findings can then be related to health status and health care use. The questions will be in the field in January. Finally, HHS StatNet, the electronic gateway to all health data and statistics, is being updated. Mr. Scanlon described its functions and uses and asked for feedback on its usefulness.

 

In the discussion, the group focused on technology adoption issues among health care providers. Dr. Middleton asked how new topics are introduced to the NCVHS workplan, and he proposed that NCVHS explore the knowledge management requirements for HIT and EHRs. This stimulated a wide-ranging discussion about the Committee’s workplan and the workforce issues raised by Mr. Scanlon and Dr. Middleton’s proposal. Some felt this represented an emerging cross-cutting topic.

 

  • CMS Update—Ms. Trudel

 

Ms. Trudel reported on CMS’s EHR pay for performance demos, PHR demonstration pilots, e-prescribing, a number of standards-related activities, and the transition to ICD-10 and HIPAA 5010. PHRs and the final topic generated considerable discussion with Committee members.

 

The EHR P4P demo, which focuses on small to medium sized primary care practices, offers incentive payments for EHR adoption and performance reporting. 12 community partners have been selected and are recruiting about 1,200 practices. The demo will be implemented in phases over five years, with phase two starting in June 2010. It is tightly coordinated with ONC work. NCVHS members expressed interest in the findings on workforce and education and asked for regular updates.

 

One PHR demo pilot is happening initially in the Columbia, SC area and eventually will make PHRs available to Medicare fee-for-service beneficiaries in the entire state. So far, more than 2,000 have signed up in response to extensive outreach.  The other pilot, “PHR Choice,” will offer beneficiaries in Arizona and Utah a choice of four commercial PHRs, to which CMS will post claims data. Data from the latter pilot, which will last about a year, will start moving in early 2009.

 

Besides expressing interest in seeing the evaluation plan for the PHR demonstrations and receiving regular updates, NCVHS members had comments and questions about the PHR pilots related to how participation by seniors is being encouraged, the nature of CMS’s research questions, and what might be learned from this project about consumer attitudes and decision-making as well as the clinical impacts of PHR use. Dr. Middleton shared Partners Healthcare’s findings on the latter and stressed the importance of physicians’ attitudes (they found physicians were activated when their patients had PHRs). He pointed out that PHRs are most valuable when they link dynamically to useful patient clinical information such as lab results. If the PHRs in the CMS demo lack this content, a negative result of the demo might be misleading.

 

Another discussion topic was the special utility of PHRs for people with chronic conditions, a subject of interest to CMS, and the importance of keeping clinical data current. Ms. Trudel stressed that “this is just the beginning of the process.”

 

Mr. Reynolds called the Committee’s attention to its role in these developmental processes, and urged that they stay focused on how the Committee can help “drive the nation forward in a standard way.”

 

Moving on to e-prescribing, Ms. Trudel described a new project offering physicians incentives for e-prescribing through the PQRI, starting in January 2009. The Department is sponsoring a conference in Boston in October on e-prescribing that at least 1,000 people will attend. It will soon award a contract for the second round of pilots of standards, sig and RX-norm, with the hope of expediting these standards. AHRQ has recommended that CMS start over with electronic prior authorization, and it is considering next steps.

 

Regarding ICD-10 and HIPAA 5010, the comment period is underway for the NPRMs issued in August, and a large quantity of comments are anticipated. This topic prompted comments and questions from NCVHS members on optimizing the mapping and crosswalks and sequencing the introduction of the new versions.

 

Standards Subcommittee Letter on e-Prescribing Standards and DEA

 

Mr. Blair noted that controlled substances, representing 12-15 percent of  all prescriptions, were one of the gap areas in the e-prescribing standards adopted in the last round. The Standards Subcommittee has developed a letter reiterating its recommendations on this subject. Dr. Warren then read the draft letter aloud, pausing periodically to receive comments and suggestions. The Subcommittee will revise the letter and present it for review on day two of this meeting.

 

ONC Updates

  • Federal HIT Strategic Plan, 2008-2012—Dr. Charles Friedman

 

Dr. Friedman reported that this strategic plan is for coordinated Federal activities. It has two goals, eight objectives, and 43 strategies, each with a milestone. Both a synopsis and the complete plan are available. It covers all Federal agencies with an active HIT program and was released on June 3, 2008 to coordinate and provide a way to measure progress. Mandated in the Executive Order creating the National Coordinator position, it was developed in a highly collaborative manner to create a single infrastructure for HIT objectives. The coequal goals are to enable patient-focused health care and to improve population health. The plan is consistent with the HHS Strategic Plan. Privacy protection is one of four crosscutting themes. ONC is developing an operational plan for implementation. The plan also reflects the need for education.

 

Mr. Reynolds offered the Committee’s help in moving the agenda forward, and Dr. Francis offered the Privacy and Security Subcommittee’s help on the privacy framework. Dr. Tang pointed out the policy nature of the four themes, and noted that policy is a major focus of NCVHS. Mr. Land observed that the plan does not mention vital statistics and surveillance activities.

 

  • NHIN Update—Dr. Friedman

 

Trial implementations are well under way. The NHIN Cooperative, an informal consortium, was created to implement tests and demonstrate information exchange core services. The first demonstration is the week of September 23, supported through contracts and grants and involving several Federal agencies and departments. In mid-September, there will be a scenario-based live webcast presentation of core services, and on December 15-16, the NHIN Forum will conduct the second phase of the trial implementation. There is an emphasis on standards. A major conceptual development is the articulation of different types of networks — geographic, organizational, and those around organizations supporting PHR-type initiatives.

 

In its discussion, the group talked about the definitions and potential uses of the categories of networks outlined by Dr. Friedman. He stressed that this is an evolutionary process, and ONC wants to embrace the diversity, be inclusive, and meet everyone’s needs. The importance of understanding the new entities was noted.

 

  • AHIC 2.0—Dr. Mary Jo Deering, Acting lead staff for AHIC Transition Activities

 

Dr. Deering reported that an “army of volunteers” helped plan the transition to AHIC 2.0 (“A-2”), making recommendations on governance, membership, sustainability, and the work of the new organization. AHIC 2.0 will be an organization of organizations, and no longer a Federal advisory committee. Its goals are to promote interoperable health information exchange and to oversee and facilitate the NHIN. Bylaws are under development and will be vetted in October, and a Board of Directors has been assembled and will first meet on October 27. The first three years will be funded by a cooperative agreement of up to $13 million.

 

The Transition Planning Group is developing a prioritized list of activities for A-2’s first calendar year. Regarding workgroups, the plan is to transition their work and intellectual capital, but not the workgroups themselves. An effort will be made to get wide input on a number of governance issues.

 

  • Privacy and Security at ONC—Dr. Morris Landau

 

Briefly, Dr. Landau reported that ONC is working on a Privacy and Security Framework. (The NCVHS Subcommittee on Privacy and Security has offered to help.) The AHIC Confidentiality, Privacy and Security Workgroup released its final comprehensive letter. The State Alliance is releasing its first report. Finally, HISPC will have a deliverable in March, and ONC is hosting a National Town Hall Meeting on medical identity theft in mid-October.

 

PHR Technology: Practical Examples from the Field

—Dominic Wallen, Health Trio

 

Mr. Reynolds offered a few introductory remarks. He explained that the purpose of Mr. Wallen’s presentation is not to favor a particular application, but to give the Committee an idea of industry progress, to complement its briefings on governmental and other activities. He noted that everything is moving very fast, and “buses are leaving the station.” The Committee’s job is to monitor what is already in productive use, policy and standards issues, and best practices. The presentation by Mr. Mertz on state activities, which follows Mr. Wallen’s, was also scheduled to contribute to the Committee’s ongoing self-education. For the PHR presentation, Mr. Reynolds noted that it shows one vendor’s approach to handling sensitive information, an issue with which NCVHS has struggled. He later commented that Health Trio’s list of the areas of sensitive data does not necessarily match anyone else’s list, suggesting the standardization challenges that lie ahead.

 

Mr. Wallen observed that Health Trio, like NCVHS, has the goal of improving access to information to improve patient safety. He added that his company follows the Committee’s work on the PHR. Health Trio is doing the CMS Medicare PHR pilot in South Carolina.

 

He stressed the importance of “how you tie data together” and said Health Trio encodes the data it receives from various sources using SNOMED. (NCVHS members had several questions and comments about the mapping they use for this purpose.) Health Trio stresses interoperability, to permit interaction between hospitals, physician offices, plan members, and other caregivers. Its “master entity index” links patients, physicians, and facilities such as pharmacies. He described in some detail his company’s efforts to secure the data and give patients control over protecting sensitive data in ways they can understand and that are flexible. The system gives health care providers and plans discretion over how much control patients have.

 

Mr. Wallen and NCVHS members then had a lively discussion about a number of issues, including the pros and cons of enabling patients to sequester sensitive information and the importance of portability and interoperability for patient records. While recognizing the downside, some members expressed pleasant surprise at the evidence that it is possible to enable patients to protect specific information. Mr. Wallen stressed that they also educate patients about the consequences of sequestering information and offer overrides for health care providers under some conditions.

 

In response to a query, he said his company would be willing to share its experience with devising cross-walks, in the public domain. The group also discussed the issues raised by the lack of HIPAA protection for PHR data and the need for a national set of standards to protect the data. Mr. Wallen assured the Committee that industry is moving in “the same direction as standards bodies” with respect to privacy, security, consent, permissions, and use.

 

After asserting that PHR value is tied to its connectivity with the EHR and to the completeness of the data available to patients, Dr. Middleton asked about the value proposition for the Health Trio model. Mr. Wallen replied, “The payer is our customer” because they centralize the available data. He acknowledged the incompleteness of claims data. Dr. Tang pointed out that the utility of a PHR depends on how useful it is to a patient for his/her health and health care, and he raised specific concerns about the use of claims data and other matters. Dr. Hornbrook stressed the importance of a “fully integrated approach” involving data from both patients and health care providers.

 

Update: Current HIT Realities in the States

—Kory Mertz, National Conference of State Legislatures (NCSL)

 

After providing some background on NCSL, which helps state legislative staffs by monitoring trends, supporting innovation, and more, Mr. Mertz said the states view HIT as a vital tool and several are integrating HIT efforts into their health care reform initiatives, partly to get costs under control. He discussed five key trends across the states: e-prescribing, updating privacy laws to facilitate health information exchange, targeted financing initiatives, promoting the use of standards-based HIT systems, and advancing adoption and use. More than 370 HIT bills were introduced in states in 2007-2008, and 132 were enacted in 44 states and DC. NCSL is preparing a paper analyzing trends in the enacted legislation.

 

On e-prescribing, states see this as more advanced than other HIT tools and have been active in this area. State laws prohibiting e-prescribing have now been eliminated everywhere. Mr. Mertz gave examples from Minnesota, Florida, and New Hampshire.

 

Regarding updating privacy laws to permit health information exchange, he noted that the states take quite different approaches to the issues involved. He offered disparate examples from Minnesota and Rhode Island, which he said have done the most to protect privacy. He offered contrasting examples from Nevada, California, and Oklahoma.

 

On targeted financing, Mr. Mertz noted that states want to target incentives to providers that are not already planning to adopt HIT —e.g., community health centers, small practices, and rural providers. States see a role for themselves in encouraging widespread adoption by allocating the cost of new systems across interested parties. The best practice for getting started is to set up a study commission that brings stakeholders together and enables the state to play a neutral convening role. Some states are establishing an HIT fund for public and private dollars, and some are creating or designating a state-level HIE organization. He described the activities of Wisconsin and Vermont. States are looking at multiple revenue sources, including dues, bonds, insurers, assessment and user fees.

 

Because states recognize that adoption is not sufficient, they are also trying to drive providers toward standards-based systems. Examples of legislation in this area are in Virginia and Minnesota.

 

To advance adoption and use, there are three key approaches: mandates, incentives, and leveraging purchasing power such as through state employee health plans. Mr. Mertz offered examples from Minnesota, Massachusetts, and Michigan.

 

Finally, he described NCSL’s HIT activities, which include its Health Information Technology Champions project, a public/private partnership, and the State Alliance for E-Health for which the National Governor’s Association is the lead. He hailed the work of the State Level Health Information Exchange Consensus Project to reduce the variation in state privacy laws. NCSL sits on its advisory board. Finally, he noted that New York has put the most money of any state into HIT and wants to set up or work with an accreditation body for HIEs and RHIOs.

 

In the discussion, NCVHS members had comments and questions about what states are doing on a business model for HIE (he said they are as “stumped” as others are) and to sustain their vital statistics capacity, among other topics. Ms. McCall pointed out the opportunities for NCVHS and NCSL to work together to optimize the uses and stewardship of health information as well as the value proposition for HIT and HIE.

 

Data Stewardship Framework: Dr. Carr and Dr. Tang

 

The purpose of this session was to orient members to a schematic in the agenda book (“Proposed Organizing Framework on Data Stewardship and Potential Focus of NCVHS Subcommittees”) and lay the groundwork for breakout sessions and future planning. Dr. Carr and Dr. Tang explained that they developed the schematic as a conceptual framework around the topic of data stewardship, a dominant recent theme, to help NCVHS subcommittees think about how (or whether) to work on it collaboratively. They explained the diagram and noted that the structure could be adapted to other topics, as well.

 

Committee discussion ranged across content and process questions. On content, members commented that the topics of accountability and ownership were missing. Dr. Steindel noted that while there are potentially multiple levels of granularity in each category that remain unnamed, it is useful to have “a one-page picture” of data stewardship.

 

Much of the discussion, as intended, concerned the process flowing from framework. Ms. McCall noted that it raises the question of what documents, policies, and guiding principles could emerge, and whether the Committee should charge itself to create them. Dr. Scanlon commented on the characteristics of the quality/population health and standards/privacy “sides” of the diagram: The former create the wish list for the demand for information, while the latter enable its supply. These “demand” and “enabling” sides of NCVHS need to interact and work together more fully in the future, he said, and enabling is essential for making progress. Mr. Reynolds explained that once decisions have been made about a focal topic, the Committee can decide how to work together to bring it forward.

 

Ms. Greenberg encouraged members also to consider alternative topics (other than data stewardship) that could provide a “galvanizing thematic effort” for crosscutting work by the Committee. She noted that such an effort would be a useful, though not essential, contribution to the NCVHS 60th Anniversary observances. Dr. Middleton suggested knowledge management as an alternative topic.

 

The Committee then recessed into Subcommittee breakout sessions, to reconvene the following day.

—DAY TWO—

Letter from Standards

 

Following introductions, the Subcommittee on Standards presented the revised version of its letter on controlled substances. Dr. Warren read it aloud. The Committee discussion of the document led to proposals for a somewhat different approach to the letter, to maximize its clarity and effectiveness. The Committee passed a motion authorizing the Subcommittee on Standards  to revise the letter further based on the foregoing discussion and authorizing the Executive Subcommittee to approve the final version.

 

Subcommittee Reports

 

Mr. Reynolds stressed that the focus, here and in forthcoming Executive Subcommittee meetings, is on planning activities through which the Committee can make a difference in the next 18 months.

 

  • Subcommittee on Population Health—Dr. Steinwachs

 

The Subcommittee may look at the patient-centered medical home as a use case, with emphasis on the extent to which it is a health promotion and prevention model with a population dimension. The Subcommittee also is considering assessing the adequacy of health statistics to support health care reform, especially related to policy information needs. Access and insurance coverage is another possible use case. The crisis in the vital statistics system will be addressed in collaboration with the BSC, possibly leading to a letter to the Secretary.

 

An emerging topic is the implications of changes in the NIH Clinical and Translational Science Awards for supporting community-investigator partnerships. The first step might be an NIH presentation to the full Committee. In addition, revisiting the vision for health statistics is still on the table; and data linkages are an ongoing interest, but a lower priority.

 

  • Subcommittee on Standards 

 

The Subcommittee believes there is marginal benefit to responding to the NPRM on the 5010. It is considering a strategy with respect to NPRMs and will present a proposed approach at the next full Committee meeting.

 

  • Subcommittee on Quality 

 

The Subcommittee has reaffirmed the vision set forth in Information for Health and is interested in focusing on the personal health dimension. It plans to hold a hearing on data needs in this area.

 

  • Subcommittee on Privacy and Security

 

The Subcommittee is working on a revised charge and next steps. One possibility is how to use de-identified data responsibly; another is privacy issues related to PHRs.

Regarding data stewardship, the Subcommittee is interested in accountability.

 

The Committee agreed to consider finding a way to make Ms. Bernstein’s literature review on privacy and confidentiality in PHRs, prepared for NCVHS, available to the public as a resource.

 

NCHS/BSC Update: Bill Scanlon and Dr. Lepkowski, BSC liaison

 

This briefing focused on the NCHS budget and its consequences. Because there has been deterioration over time, the Board of Scientific Counselors is concerned about erosion of the integrity of surveys and vital statistics—this at a time when solid information is needed to guide and assess health reform efforts. A broad audience needs to hear this message, including OMB, the White House, and Congress.

 

The BSC is continuing to review individual NCHS programs, having completed its review of mortality and natality statistics and being close to finishing the NHIS review. Long-term care statistics are next. The BSC review provides a backdrop for looking at what resources are available for surveys.

 

The BSC has recommended that NCHS look seriously at eliminating some systems in order to be able to pay for adequate sample sizes in others. The timing is critical because of the planned redesign of the NHIS and the expiration of the NHANES contract, both in 2013. One possibility being considered is merging NHIS and NHANES.

 

Dr. Lepkowski noted that several privacy issues are under consideration by the BSC. For example, CDC is concerned about the privacy and confidentiality of biomarkers and other genetic information now collected by NHANES.

 

60th Anniversary: Ms. Greenberg

 

The celebration of NCVHS’s 60th anniversary will take place in June 2010 (date not yet set) at the National Academy of Sciences. Ms. Greenberg asked members to be thinking about NCVHS products to roll out around then and possible synergistic events and publications by members’ organizations and other organizational friends of NCVHS.

 

The following documents and events are being planned or considered as part of observing the anniversary:

 

  • A 10-year retrospective (building on the 50-year history);
  • A gathering in Charlottesville, VA of current and former NCVHS chairs to reflect on the Committee’s 60 years of advising on information for health, possibly filmed;
  • Update of the 21st century vision;
  • A series of events leading up to the June 2010 celebration;
  • A session on NCVHS at the data users conference in summer, 2010.

 

In addition, there is synergy with these activities of the WHO Collaborating Center for the Family of International Classifications for North America:

 

  • Annual meeting, October 2008 (members approved having a poster on “The National Committee on Vital and Health Statistics (NCVHS): 60 Years of Making a Difference”);
  • 15th conference of the North American Collaborating Center on the International Classification of Functioning, Disability and Health (ICF) in 2010.

 

Members discussed the importance of mounting an effective marketing and communications campaign to acknowledge NCVHS achievements over six decades and publicize these events and activities. They were urged to hold each other accountable for producing a vision for the coming period that is as influential as the two that NCVHS contributed in the past decade. There was a query about possible grant funding, and Commonwealth Fund and Kaiser Family Foundation were suggested.

 

Kudos and Farewell to Dr. Steindel

 

Finally, Mr. Reynolds noted that as of this meeting, Dr. Steindel was retiring from CDC and thus as liaison to NCVHS. Committee members and staff applauded him for his major contributions to the Committee.

 

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

 

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Chair                                                                                                    Date