Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

June 10-11, 2009

National Center for Health Statistics
Hyattsville , MD

Meeting Minutes


The National Committee on Vital and Health Statistics was convened on June 10-11, 2009, at the National Center for Health Statistics in Hyattsville, MD. 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.
  • Garland Land, M.P.H.
  • Carol J. McCall, F.S.A., M.A.A.A.
  • Sallie Milam, J.D.
  • Blackford Middleton, M.D.
  • J. Marc Overhage, M.D., Ph.D.
  • William J. Scanlon, Ph.D.
  • Walter Suarez, M.D.
  • Paul Tang, M.D.
  • Judith Warren, Ph.D., R.N.
  • Absent: Donald M. Steinwachs, Ph.D.

Staff and liaisons

  • Marjorie Greenberg, NCHS/CDC, Exec. Secretary
  • James Scanlon, ASPE, Exec. Staff Director
  • J. Michael Fitzmaurice, Ph.D., AHRQ liaison
  • Ed Sondik, Ph.D., NCHS liaison
  • Charles Friedman, Ph.D., ONC liaison
  • Jorge Ferrer, M.D., VHA liaison
  • Karen Trudel, CMS liaison
  • Mike O’Grady, Ph.D., NORC/Univ. of Chicago, BSC liaison
  • Debbie Jackson, NCHS

Others

  • Marietta Squire, NCHS
  • Maria Friedman, SureScripts
  • David Connolly, Capitol Associates
  • Frank Kyle, DDS, American Dental Assn.
  • Dale Hitchcock, HHS
  • Edward Porcaro, Fox Systems
  • Michael DeCarlo, BlueCross BlueShield
  • John Hough, Dr. PH, CDC
  • Allison Viola, AHIMA
  • Virginia Cain, Ph.D., NCHS

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.


EXECUTIVE SUMMARY

ACTION

Subject to wordsmithing by the Executive Subcommittee, the Committee approved a letter to the Secretary recommending adoption of NCPDP 10.6 for e-prescribing in nursing homes.

Department Update—Mr. Scanlon

Mr. Scanlon noted the appointment of Secretary Sebelius and a Deputy Secretary since the last NCVHS meeting. He reviewed the status of the heads of the major agencies, and said an HHS Office of Health Reform has been established. He then reported on the transition and personnel, the budget and the Recovery Act, forthcoming legislation, and new HHS projects. NCVHS members had a number of comments about the funding and provisions for research on comparative effectiveness, which participants described as an evolutionary process.

CMS Update—Ms. Trudel

Ms. Trudel reported on CMS’ work on PHRs and the new HIPAA transaction code set standards, which became effective on March 27, the 5010 and ICD-10 code sets for diagnosis and procedures. The 5010 takes effect in 2012, and ICD-10 in 2013, and CMS is trying to help the industry as it makes this transition.

Regarding PHRs, CMS is continuing its two pilots—one of a single PHR for South Carolina fee-for-service beneficiaries, with 4,000 using it; and the other, in which beneficiaries can choose among four PHRs, in Arizona and Utah. CMS is learning a lot from these pilots, which end at the end of 2009, and it is now evaluating them through beneficiary surveys and analysis of the impact on selected quality measures and care utilization. NCVHS members had a number of comments and questions about the PHR pilots and related topics, and expressed strong interest in learning about the findings as soon as possible and perhaps participating in the evaluation. Ms. Trudel said CMS would be glad to formally brief NCVHS when the evaluations are completed. The Subcommittee on Privacy and Security has already been briefed on the pilots.

NCVHS Summary Following Public Meeting on Meaningful Use—Mr. Reynolds

NCVHS held a hearing on meaningful use on April 28-29, 2009. Forty invitees spoke at the hearing, along with another 20 people; and 90 people sent written comments, for a total of about 150 inputs. About 300 people attended each day of the hearing, including Dr. Blumenthal, the National Coordinator, who attended for all but the final hour. The NCVHS Executive Subcommittee, working closely with ONC staff, hosted the hearing. The Subcommittee on Standards also participated. NCVHS members listened to or read the input and then grouped the content into observations and five overarching themes, also noting the gaps in the topics covered. The Executive Subcommittee made no recommendations. Two documents were sent to Dr. Blumenthal and promptly posted on the NCVHS Website: “Observations on ‘Meaningful Use’ of Health Information Technology” (June 2009) and “Report of Hearing on ‘Meaningful Use’ of Health Information Technology” (May 2009). Mr. Reynolds described highlights of the two documents. One idea that emerged was the idea of “meaningful use capacity,” together with the insight that this is a journey, with different practices entering the field at very different places.

Mr. Reynolds’ report stimulated considerable discussion among NCVHS members. Dr. Scanlon observed that because of the Stimulus Act, we are now at a turning point when health IT, which has been a hypothetical tool, has the potential to become an effective tool for monitoring and improving population health. Whether that happens or not depends in large part on how meaningful use is defined over the next five years or more. He urged that NCVHS, with its focus on population health, think about the definition and its evolution and impact on population-level health statistics.

ONC Update and Current Activities—Dr. Freidman, Ms. Daniel, Dr. Glaser

Ms. Daniel briefed the Committee on the HIT Policy Committee, which includes representatives from various stakeholder groups. It is chaired by Dr. Blumenthal. Its broad charge is to recommend a policy framework for the development and adoption of a nationwide health information technology infrastructure that permits electronic exchange of health information, and to inform the Standards Committee on policy priorities related to standards and certification. The Committee has workgroups on meaningful use, certification/adoption, and health information exchange.

Dr. Glaser talked about the Standards Committee. Its work is likely to involve changes in the handling of certification related to new meaningful use criteria and other national priorities. It also may recommend priorities for new standards. This Committee has workgroups on clinical operations, clinical quality, and privacy and security. He noted that the December deadline for an interim final rule leaves little time to settle on a definition of meaningful use.

Dr. Friedman reported on the regional extension centers program, referring members to the notice in the May 28, 2009, Federal Register (page 25550 ff.). He emphasized that the notice is a draft, with a request for comments. The grant program is mandated in HITECH. The extension center program includes a central national center and a system of regional centers, all part of a national consortium. Initial awards for the centers, probably two years in duration, are anticipated as early as the first quarter of FY2010, recognizing the need for this resource as soon as possible. In the discussion period, several NCVHS members expressed excitement about the centers and the impending investment in education and practical, ground-level support.

Are the Stars Aligning for ICF in the United States?—Lisa Iezzoni, M.D., M.Sc.

Dr. Iezzoni observed that today’s abundant codes say little about how persons are functioning and participating in the activities of daily life, and this will be so even after the transition to ICD-10-CM. A major point is that unlike other civil rights law, the ADA requires that disability be known and noticed; and “that is where the codes come in.” To be accessible to people with disabilities, the health care system needs codes and medical records to alert clinicians to patients’ needs. The International Classification of Functioning, Disability and Health (ICF), the focus of this presentation, was endorsed by WHO in 2001 but has never gained traction in the U.S. as a coding system.

Dr. Iezzoni organized her presentation around five key leverage points for getting ICF into common use: societal forces, demographic forces, the consequences of health care reform, the public health focus on the determinants of health, and the growing recognition of ICF in the U.S. Regarding health care reform, she noted that the U.S. needs to know more about patients’ functional status to be able to assess the outcomes of care. She stressed that health information technology does not need to wait for health care reform to add this information; the ARRA already requires “appropriate information to help guide medical decisions at the time and point of care,” which, she asserted, must include functional status. She raised the possibility that ICF could be integrated within the standard electronic health record framework.

With regard to understanding the determinants of health, she observed that the ICIDH, a predecessor to ICF, had the same environmental point of view as Healthy People 2010; and Healthy People 2020 will go even further. She showed a Healthy People graphic illustrating the nested determinants of health and noted that these concepts are part of the ICF framework. The final star to be aligned for the use of ICF in the U.S. is growing recognition of the classification system, and Dr. Iezzoni cited several examples of this growing recognition. Notably, the committee that wrote the 2007 IOM report Future of Disability in America (of which she was a member) concluded that the ICF was “the only reasonable thing to focus on.”

During the discussion period, many NCVHS members expressed appreciation for Dr. Iezzoni’s presentation and affirmed the importance of the topic and goals. Several offered additional evidence that the stars are indeed aligning. Members asked for her comments on operationalization challenges and privacy and discrimination issues.

Recommendation letter on NCPDP 10.6—Dr. Warren

Dr. Warren presented a draft letter by the Subcommittee on Standards, based on hearings held in November 2008, and responding to a legislative mandate in the Medicare Modernization Act of 2003. Long-term care facilities are exempt from existing e-prescribing standards, and there has been a process to modify the standards to make them workable in that setting. The NCVHS letter recommends adoption NCPDP SCRIPT 10.6, in which limitations in version 10.5 have been corrected. She read aloud the draft letter and invited comments, which were offered and discussed, along with a few process issues. The Subcommittee revised the letter based on this discussion, and presented it on day two of the meeting. Following further discussion and revisions, the letter was approved, subject to wordsmithing by the Executive Subcommittee.

Health Data Stewardship Primer—Mr. Reynolds

Mr. Reynolds presented a draft NCVHS primer on health data stewardship, created to provide an entry point for people in the field unfamiliar with the concept and to serve as a concise summary and resource for the field. He noted that it is meant to “play across all audiences.” Committee members suggested ways to enhance the document and discussed the importance of a strong distribution plan. They also discussed possible technology solutions to enable online multi-viewer editing and asynchronous communication between meetings.

“Health Statistics for the 21st Century” Update—Ms. Greenberg, Dr. Scanlon

This project involves updating the NCVHS vision for 21st century health statistics to accommodate the major changes in the environment that have happened since it was published in 2002. Ms. Greenberg reported that the consultants for this project, Dan Friedman and Gib Parrish (two of the three authors of the original report), have briefed the Subcommittee on Population Health on their work on the project. For phase one, they are interviewing a series of “key thinkers” on the topic, using questions developed with the Subcommittee on Population Health. They will then produce a working paper (an internal document) on expected changes to the vision, which they will be present to the full Committee in September, 2009.

NCHS/BSC Update—Vital Statistics—Dr. Sondik, Dr. Scanlon

Dr. Sondik reported that NCHS was saved from having to continue “draconian measures” by a sizable increase in its budgets for fiscal years 2009 and 2010. The Center was able to return the National Health Interview Survey (NHIS) to a good level. In 2010, it will stabilize vital statistics and increase the NHIS sample size and make other improvements that, while not sufficient, will go some distance in giving information on the diverse U.S. population. The major issues for NCHS are the absence of an extramural research program to do needed methods development and quality control research. The Center also needs to improve the ability to measure the diversity of the population and secure the future of NHANES. There also is a drive towards more State and local data. He said the highest priority is “to build a vital statistics system that is 21st century.”

The possibility of looking at health utility measures was raised with respect to the vision for 21st century health statistics. Ms. Greenberg suggested holding a hearing or workshop on the topic.

NCVHS 60th Anniversary—Ms. Greenberg

The yearlong events celebrating NCVHS’s 60th anniversary have begun, and a ten-year update to the 50-year history of NCVHS is being developed. The NCVHS special anniversary event will take place on June 17, 2010, at the National Academy of Sciences. Plans are proceeding for the September 2009 gathering of NCVHS current and former Chairs in Charlottesville, VA. The two-day event will include a roundtable discussion and individual interviews.

Subcommittee Reports

(See the brief items at the end of the detailed summary, below.)


DETAILED SUMMARY

—Day One—

Introductory Remarks—Mr. Reynolds

After welcoming Dr. Charles Friedman as the new liaison from the Office of the National Coordinator (ONC), Mr. Reynolds observed that this continues to be a time of change and transition for both the Committee and the nation. He thanked members and staff for their hard and dedicated work, and stressed the importance of flexibility in the coming months.

Department Update—Mr. Scanlon

Mr. Scanlon reported on the transition and personnel, the budget and the Recovery Act, forthcoming legislation, and new HHS projects. He noted the appointment of Secretary Sebelius and a Deputy Secretary since the last NCVHS meeting, reviewed the status of the heads of the major agencies, and said an HHS Office of Health Reform has been established.

The President has sent the FY2010 budget to Congress, and HHS has begun work on the 2011 budget. The budgets for 2009 and 2010 are positive for population statistics, with increases for NCHS in both years.

The Recovery Act/Stimulus Act includes 167 billion over ten years, 144 billion of it for Medicaid, to assist states. There is also sizable funding for IT that is not tied to specific years. Two billion dollars are for HITECH, with stipulations about creating standards and policy advisory committees. The “retail side” has $19 million in incentives through Medicare and Medicaid for EHR adoption and other IT. NCVHS held hearings to help define meaningful use, a provision of the Act. (See report on the hearing, below.) There are also provisions to strengthen privacy and confidentiality. A second part of the Act has about $1.1 billion for an HHS prevention and wellness fund, with some of the money going to CDC for vaccine activities. The third part is roughly $1 billion for comparative effectiveness research, $400 million of which will be administered by HHS. A Federal coordinating council has been established and will make recommendations based on a series of listening sessions.

Dr. Hornbrook commented on the difficulty of analyzing comparative effectiveness without reference to cost, which Mr. Scanlon acknowledged is not in the statute. Dr. O’Grady observed that the people working on this believe it is appropriate to “take the first step” in thinking about comparing things, as a proof of concept; and they are aware of cost even if they are not discussing it. Dr. Scanlon stated his agreement with Dr. O’Grady that this is an evolutionary process. Dr. Middleton proposed that NCVHS schedule a “comparative effectiveness day” sometime because of the many overlaps with its focal areas—an idea Mr. Scanlon endorsed.

CMS Update—Ms. Trudel

Ms. Trudel reported on CMS’ work on PHRs and the new HIPAA transaction code set standards that became effective on March 27, 5010 and ICD-10 code sets for diagnosis and procedures.

She noted that the latter remain a significant workload for providers and plans, and CMS is trying to help the industry through this transition. The 5010 takes effect in 2012, and ICD-10 in 2013. CMS has an ICD-10 steering committee representing all its operating divisions, and it is finalizing an impact analysis and a game plan for how to move forward on issues that cross business lines. It also is working to get the word out to the industry and to provide education. It will soon award a national contract for program management for its internal processes.

Regarding PHRs, CMS is continuing its two pilots—one of a single PHR for South Carolina fee-for-service beneficiaries, with 4,000 using it; and the other, in which beneficiaries can choose among four PHRs, in Arizona and Utah. CMS is learning a lot from these pilots, which end at the end of 2009, and is now evaluating them through beneficiary surveys as well as analysis of the impact on selected quality measures and care utilization.

Committee members engaged in considerable discussion of the PHR pilots and related topics. Asked what CMS is learning, Ms. Trudel said one thing is that person-to-person outreach seems to work best. Asked how CMS would compare the variables in the two sites related to whether or not people could choose their PHR, she said this would be tricky, but somehow the variations would be factored in. Dr. Green emphasized the Committee’s interest in learning from these trials and from the PCMH trials. Ms. Trudel said CMS would be glad to formally brief NCVHS when the evaluations are completed. Mr. Reynolds noted that the Subcommittee on Privacy and Security has already been briefed on the pilots.

Dr. Tang and others expressed interest in NCVHS involvement in the evaluation process. He noted the significance of the fact that the contracts and the evaluation were devised prior to the Recovery Act. Dr. Middleton observed, based on his research, that the value proposition for PHRs can vary a good deal as a function of different architectural approaches. Mr. Scanlon referenced relevant research by Pew on people’s habits and attitudes with respect to PHRs. Ms. McCall urged that there be “a lot more experiments,” and an attempt to learn from the evidence, as we enter a new era of information technologies and products. Dr. Suarez called for comparative effectiveness research on health information technology such as PHRs. He also noted the population dependency of the current Medicare PHR pilots and the pitfalls of generalizing from the findings; he proposed similar experiments with Medicaid beneficiaries.

Dr. Friedman called attention to the enterprise integration centers that are part of the HITECH Act as a location where some of the recommended research on HIT could take place. Dr. Middleton noted the need for more implementation science to make the extension centers work well.

Mr. Reynolds commended CMS for its “magnificent job” in handling the transition to 5010 and ICD-10 code sets.

NCVHS Summary Following Public Meeting on Meaningful Use—Mr. Reynolds

Mr. Reynolds thanked Margaret Amatayakul, NCVHS staff members, and others for an outstanding job with the NCVHS hearing on meaningful use, held on April 28-29, 2009. The NCVHS Executive Subcommittee, working closely with ONC staff, hosted the hearing. The Subcommittee on Standards also participated. Forty invitees and another 20 people spoke at the hearing and 90 people sent written comments, for a total of about 150 inputs. About 300 people attended each day of the hearing, including Dr. Blumenthal, the National Coordinator, who attended all but the final hour. The Subcommittee listened to or read the input and then grouped the content into observations and five overarching themes. It made no recommendations but did identify gaps. Two documents were sent to Dr. Blumenthal and subsequently posted on the NCVHS Website: “Observations on ‘Meaningful Use’ of Health Information Technology” (June 2009) and “Report of Hearing on ‘Meaningful Use’ of Health Information Technology” (May 2009).

Mr. Reynolds briefly described the highlights of the two documents. He said the oral and written testimony was rich and helpful, and the common directions were easy to identify. There were varied opinions as to the options for approaching meaningful use (see pages 4-5 of the June “Observations”). The Committee also identified gaps in testimony. Mr. Reynolds called particular attention to the vision statement in the June report. One idea that emerged was the idea of “meaningful use capacity,” together with the insight that this is a journey with different practices entering the field at very different places. Other key points, he said, relate to vendor cycles (see page 9 of the June report) and certification. Mr. Blair and others observed that there were tensions among the testimonies regarding certification.

This topic stimulated considerable discussion among Committee members. Asked how the topic and project might affect NCVHS subcommittees’ workplans for the future, Mr. Reynolds said it is “one input.” One factor will be what contributions would be useful to ONC and/or other Committee customers.

Dr. Scanlon observed that NCVHS has for some time been pursuing a theme of how we get and use data most efficiently for monitoring and improving population health. Now, because of the Stimulus Act, we are at a turning point when health IT, which has been a hypothetical tool, has the potential to become an effective tool for these purposes. Whether that happens or not depends in large part on how meaningful use is defined over the next five years or more. He urged that NCVHS, with its focus on population health, think about the definition and its evolution and impact on population level health statistics.

Ms. McCall praised the inclusion of gaps in the NCVHS report and suggested that the gaps may point to opportunities for NCVHS contributions. There also are opportunities for it to identify connections between big themes, such as between ICD-10 code sets and comparative effectiveness. Dr. Suarez observed that NCVHS sometimes is called upon to lead, sometimes to collaborate, and sometimes to “get out of the way.” He stressed that the Committee should keep an eye on the large issues that cut across not just health IT but population health and quality assessment. He also recommended attention to process optimization. Dr. Hornbrook pointed to the important factor of cultural sensitivity in understanding meaningful use, along with social aspects such as the impact of patients’ personal debt or residence in an abusive environment. Dr. Sondik stressed the need for a strategy to objectively evaluate health IT in terms of its outcomes. Ms. McCall agreed, and said the Committee could contribute by helping to identify the metrics and the data sources for such an evaluation.

Dr. Green described a trend he is observing in the clinical world, away from simply acquiring an EHR and toward acquiring “a module that can solve a problem…to help people” — involving looking for such things as modularity, interoperability, and hyper-exchangeability to get information to where the patient is. He urged Committee members to “keep our eyes and ears open where we are between Committee meetings” because these perspectives bring value to the Committee’s contributions.

ONC Update and Current Activities—Dr. Freidman, Ms. Daniel, Dr. Glaser

Ms. Daniel began by briefing the Committee on the HIT Policy Committee, which met for the first time in May and includes representatives from various stakeholder groups. It is chaired by Dr. Blumenthal. Its broad charge is to recommend a policy framework for the development and adoption of a nationwide health information technology infrastructure that permits electronic exchange of health information, and to inform the Standards Committee on policy priorities related to standards and certification. The Committee has workgroups on meaningful use, certification/adoption, and health information exchange; and a presentation by the first of these is the likely focus of the next meeting of the full Committee on June 16. It will meet about once a month.

Dr. Glaser talked about the Standards Committee. Its work is likely to involve changes in the handling of certification related to new meaningful use criteria and other national priorities. It also may recommend priorities for new standards. This Committee also has three workgroups, on clinical operations, clinical quality, and privacy and security. Its second meeting will be on June 23. He noted that the December deadline for an interim final rule leaves little time to settle on a definition of meaningful use. There is work on crosswalking the definition to relevant CCHIT criteria and relevant standards accepted through the HITSP process. Also, there are proposals on measures for determining whether meaningful use has occurred, including to support quality measurement. Finally, the group is identifying where the gaps and holes are. All of this is near-term work to help frame the regulation.

In response to questions, Dr. Glaser said the legislation gives no expiration date for the FACAs; and certification will continue to look “like it does today.” Dr. Hornbrook noted the importance of ensuring that EHRs can talk to the public health statistics system; and Ms. McCall pointed out the growing dynamism of data streams and the importance of capturing this information for population health purposes. The group also discussed the tension between certification and implementation.

Dr. Friedman then reported on the regional extension centers program, referring members to the notice in the May 28, 2009, Federal Register (page 25550 ff.). He emphasized that the notice is a draft, with a request for comments. The grant program is mandated in HITECH. The extension center program has two parts, a central national center and a system of regional centers, all of which are part of a national consortium. The priority customers are public, not-for-profit, or critical access hospitals; FQHCs, entities in rural and underserved areas, and individual and small-group practices. The centers must be affiliated with non-profit organizations and meet specified criteria. Preference will be given to regional centers that are organized as multi-stakeholder collaborations and that bring to bear matching funds. (Dr. Friedman added later that they are “hoping for creative, regionally responsive and grounded” solutions.) Initial awards for the centers, probably two years in duration, are anticipated as early as the first quarter of FY2010, recognizing the need for this resource as soon as possible.

Dr. Friedman invited comments and suggestions from NCVHS members, and several expressed excitement about the centers and the impending investment in education and practical, ground-level support. They also asked a few questions and learned that another program focuses on developing the workforce for informatics; and that ONC is aware of the possibility that underserved regions will be left out and is thinking about how to address this. Another question concerned how the organizations become self-sustaining. Ms. Greenberg noted the need to clarify the relationships among the national center and consortium, on the one hand, and the various FACAs, on the other, so that their experience can inform the policy process.

Are the Stars Aligning for ICF in the United States?—Lisa Iezzoni, M.D., M.Sc.

After acknowledging Ms. Greenberg and Dr. John Hough, Dr. Iezzoni began her presentation by noting that the U.S. health care system could not function without coded data. While the country is “awash in codes,” the codes say little about how persons are functioning and participating in the activities of daily life, and this will be so even after the transition is made to ICD-10-CM. The International Classification of Functioning, Disability and Health (ICF), the focus of this presentation, was endorsed by WHO in 2001 but has never gained traction as a coding system in the U.S.

Dr. Iezzoni organized her presentation around five key leverage points for getting ICF into common use: societal forces, demographic forces, the consequences of health care reform, the public health focus on the determinants of health, and the growing recognition of ICF in the U.S. She noted that in 2001, when she chaired the Subcommittee on Population Health, NCVHS issued a report on functional status that stated that the ICF is the only existing classification system that could be used to code functional status across the age span. It observed that this concept applies to all persons, a principle that remains true—i.e., everyone has a functional status. She noted some of the changes over recent decades in attitudes, visibility, and activity with respect to people with disabilities. The major point, she said, is that unlike other civil rights law, the ADA requires that disability be known and noticed; and “that is where the codes come in.” And to be accessible to people with disabilities, the health care system needs codes and medical records to alert clinicians to patients’ needs.

On demographic forces, Dr. Iezzoni presented several concepts along with illustrative statistics. Across the life span, Americans are living with growing numbers of chronic conditions and disabilities. There are pockets of people with disabilities, such as veterans and people over age 75. Disease and disability are distinct concepts, as is functional impairment, although they often coexist and interact. A 2007 IOM report stated that at some point, virtually everyone in the U.S. will have a disability or live with or care for someone who does.

Regarding health care reform, Dr. Iezzoni discussed the role of aging and disability in contributing to escalating costs. Two studies found that between 1940 and 1990, aging contributed very little to cost escalation, compared to technology-related changes. In the context of quality improvement, she noted that the U.S. needs to know more about patients’ functional status to be able to assess the outcomes of care. With its Hospital Compare data, Medicare is trying to report useful data with which to compare hospitals on mortality; but (in addition to the failure to identify patients with DNRs) full risk adjustment is not possible without information on patients’ clinical risk—something ICF codes in the discharge abstract could accomplish.

Dr. Iezzoni stressed that health information technology does not need to wait for health care reform to add this information the ARRA already requires “appropriate information to help guide medical decisions at the time and point of care,” which, she asserted, must include functional status. She queried, “What are the electronic options, and can ICF be integrated within the standard electronic (health record) framework?” The work of the Consolidated Health Informatics (CHI) Initiative in 2005-6 indicates that it can. The obstacles to this change are the silos in which nursing homes, home health and inpatient rehabilitation operate; what is needed is a continuum that makes it possible to look cohesively at functional status.

Another “star” to be aligned is public health, and understandings about the determinants of health. The ICIDH, a predecessor to the ICF, had the same environmental point of view as Healthy People 2010; and Healthy People 2020 will go even further. Dr. Iezzoni showed a graphic of the action model for achieving Healthy People 2020 objectives. Moving outward from the individual, the determinants include individual biology; social, family and community networks; living and working conditions; and broad social, economic, cultural health and environmental conditions, and policies at the global, national, state and local levels. This is part of the ICF framework.

She also cited chapter six of Healthy People 2010, which covers disparities for people with disabilities. She shared data from one of her studies of SEER data showing that women with disabilities are 45 percent more likely to die from breast cancer, and discussed the data limitations related to information on functional status. She then discussed the strengths and weaknesses of the AHRQ National Health Care Disparities reports, which contain only very limited content on disabilities.

The final star to be aligned for the use of ICF in the U.S. is growing recognition of the classification system. Dr. Iezzoni cited the 2001 NCVHS and 2005-6 CHI recommendations, and the use of ICIDH in the conceptual framework of Healthy People 2010. In addition, the National Library of Medicine added ICF to its UMLS in 2009, and NIDRR has incorporated ICF into its logic model. Further, the committee that wrote the 2007 IOM report Future of Disability in America (of which she was a member) concluded that the ICF was “the only reasonable thing to focus on.” Its recommendation 21 calls for NCHS, Census, and the Bureau of Labor Standards to adopt an ICF framework when thinking about functional status and disability.

She concluded, “I hope the stars have aligned for ICF.”

Discussion

Many NCVHS members expressed appreciation for Dr. Iezzoni’s presentation and affirmed the importance of the topic. Several offered additional evidence that the stars are indeed aligning. Dr. Scanlon observed that the steps Dr. Iezzoni recommends are “essential for health reform” because they help go beyond diagnosis to define what a patient needs; they enable proper risk adjustment; and they provide a way of taking into account people who might otherwise be left behind.

In response to a question about operationalizing challenges and who should collect the data, Dr. Iezzoni described her finding years ago that the data nurses collect for functional pattern assessments of inpatients’ ability to bathe and feed themselves are the most predictive of mortality for people with pneumonia and heart failure. Research shows that physicians are not as good as nurses at measuring their patients’ functional status; they tend to over-assess how impaired they are. She has wondered about having patients help document the medical record themselves. Dr. Sondik asked about the complexity of the code set. Dr. Iezzoni acknowledged the challenge of mastering a new classification system but emphasized that “there are some really interesting codes in there (the ICF) that get at concepts that are nowhere else, that you can not replicate with ICD.”

Dr. Francis observed that along with the advantages of “knowing and noticing” a person’s functional status come risks, partly due to the confusion of disability with disease and the tendency to medicalize disability. Noting that many people hide their disability, she wondered about masking possibilities. Dr. Iezzoni stated her “respect” for concealing information about disability in certain situations; but overall, she said, “it is better to have it out there” and to monitor discriminatory behavior.

Recommendation Letter on NCPDP 10.6—Dr. Warren

After giving background information, Dr. Warren presented a draft letter by the Subcommittee on Standards. It is based on hearings held in November 2008, and responds to a legislative mandate in the Medicare Modernization Act of 2003. Long-term care facilities are exempted from existing standards for e-prescribing, and there has been a process to modify the standards to make them workable in that setting. In the new letter, NCVHS recommends adoption of NCPDP SCRIPT 10.6, which corrects limitations in version 10.5. She read aloud the draft letter and invited comments, which were offered and discussed, along with a few process issues. (See transcript for details.)

The Subcommittee took the suggested revisions to its breakout session, with a plan to bring a revised version of the letter to the full Committee the following day.


—Day Two—

Recognition of NCVHS Staff

Ms. Greenberg announced that NCVHS staff members Marietta Squire and Cynthia Sydney had received NCHS “On the Spot Awards” for their outstanding support of the April 28-29, 2009 NCVHS hearing. She added that, although these awards are not available to contractors, she also wanted to publicly recognize principal contractor Jeannine Christiani, of Magna Systems, whom “we consider a member of the staff.” Members affirmed that these awards and the recognition are well deserved.

NCPDP 10.6 Recommendation Letter—Dr. Warren

Dr. Warren presented a revised version of the letter discussed on the previous day. There was further discussion, with additional revisions. The Committee then approved a motion approving the letter, as revised, and subject to final wordsmithing.

Health Data Stewardship Primer—Mr. Reynolds

Mr. Reynolds reminded the group of the decision to create a primer on health data stewardship, both to provide an entry point for people in the field unfamiliar with the concept and to serve as a concise summary and resource for the field. He noted that it is meant to “play across all audiences.” He commended Dr. Carr and Ms. Kanaan for creating the document, and reviewed its structure and content. Committee members expressed support for the primer and offered questions and comments about its target audience(s), distribution plan, purpose, and potential uses. Dr. Warren and other educators stressed its potential value for students preparing for relevant professions. Members agreed that the primer should be “pushed out,” and that it should include an explanation of the Committee’s purpose in creating it. Mr. Reynolds invited recommendations from members about distribution. Various enhancements and clarifications were also suggested.

Ms. McCall urged that the Committee be more intentional in integrating data stewardship language and principles into its own work, and suggested consideration of serving as a centralizing place for people in the field to present and discuss best practices in data stewardship.

Members talked at some length about their desire for an online way for Committee members and staff to communicate asynchronously between meetings, as well as for online document editing software to enable real-time editing with multiple participants/viewers. It was also noted that the Committee could reduce the amount of paper it uses in its document production process. Several members volunteered to help research the options for both technologies. Ms. Greenberg said that Ms. Jones has already been investigating options for a kind of intranet.

“Health Statistics for the 21st Century” Update—Ms. Greenberg, Dr. Scanlon

Ms. Greenberg reported that the consultants for this project, Drs. Dan Friedman and Gib Parrish (two of the three authors of the original report), have briefed the Subcommittee on Population Health on their work on the project. Dr. Scanlon, who co-chairs the Subcommittee, explained that the project involves updating the NCVHS vision for 21st century health statistics to accommodate the major changes in the environment that have happened since it was published in 2002. For “phase one,” the consultants are interviewing a series of “key thinkers” on the topic, using questions developed in consultation with the Subcommittee on Population Health. On that basis, they will produce a working paper (an internal document) on expected changes to the vision, which they will be present to the full Committee in September, 2009.

In response to a question, Ms. Greenberg said the intended output of this project is “still evolving.” It will be scaled back from the original process and report, which involved a series of hearings and consultations and generated scores of recommendations. At a previous meeting, the Committee helped prioritize these to identify eight that are most relevant and in need of revisiting. The consultants, whom she described as “facilitators for NCVHS,” are also doing a literature review.

Dr. Suarez commented that the conjunction of health care reform, the NCVHS 60th anniversary, and revisiting the health statistics vision provides a unique opportunity to “define the vision for the next ten years.”

NCHS/BSC Update—Vital Statistics—Dr. Sondik, Dr. Scanlon

Dr. Sondik reported that NCHS was saved from having to continue “draconian measures” by a sizable increase in its budgets for fiscal years 2009 and 2010. The Center was able to return the National Health Interview Survey (NHIS) to a good level. In 2010, it will stabilize vital statistics and increase the NHIS sample size and make other improvements that, while not sufficient, will go some distance in giving information on the diverse U.S. population. He noted a drive toward more local and state data. NCHS also will put a residential care survey in the field in 2010—a “frontier area.”

The major issues for NCHS are the absence of an extramural research program to do needed methods development and quality control research. In addition to improving the ability to measure the diversity of the population, NCHS needs to secure the future of NHANES. He added that the highest priority is “to build a vital statistics system that is 21st century.” However, he is not optimistic about getting any Stimulus money for this purpose.

Dr. Hornbrook, using childbirth as an example, commented that the principle behind vital statistics should change from “waiting until everything is all done before sending data up” to “as soon as you know something, send it electronically.” He asked about the potential for doing surveillance using “inferential and non-obvious sources.” Dr. Sondik said the Center would like to pursue this, but it would require staff, money, and extramural partners.

Dr. Scanlon said that given the infusion of resources into NCHS in the 2009 and 2010 budgets, the Subcommittee on Population Health is considering writing a thank you letter to the Secretary, stressing the importance of this investment.

The possibility of looking at health utility measures was raised with respect to the vision for 21st century health statistics. Ms. Greenberg suggested holding a hearing or workshop on the topic. Dr. Sondik said it would be good to discuss it, and there are opportunities to collect this information, as is done in Europe.

NCVHS 60th Anniversary—Ms. Greenberg

The events celebrating NCVHS’s 60th anniversary have already been launched, with a poster on NCVHS for an international WHO meeting and a series of events for ICF Week, which included Dr. Iezzoni’s lecture yesterday. The work on the 21st century health statistics vision is part of this process; and a ten-year update to the 50-year history of NCVHS is being developed.

Plans are proceeding for the September 2009 gathering of NCVHS current and former Chairs in Charlottesville, VA. The two-day event will combine individual interviews focusing on oral histories and a roundtable discussion. Portions of the events will be videotaped. The material will be used in a film and in the history document.

Ms. Greenberg reminded members of the opportunity in the next year to piggyback their professional organizations’ events with the observation of the NCVHS 60th anniversary. The 2010 NCHS Data Users Conference will include a session related to NCVHS; and Dr. Warren is planning such an event.

The NCVHS special anniversary event will take place on June 17, 2010, at the National Academy of Sciences. The Secretary and all former NCVHS members will be invited. It will include a seminar, followed by a reception. Ms. Greenberg invited suggestions for the seminar topic.

Subcommittee Reports

Dr. Carr reported that the Subcommittee on Quality is looking at the role of HIT in facilitating the measurement of care; the need for information on outcomes; measures of physician competence; and issues related to the redesign of workflow and reconfiguration of culture. It has not yet decided which topic(s) to pursue. She presented a checklist of criteria for deciding on hearings or areas of focus, which other subcommittees may wish to use.

Dr. Francis reported that the Subcommittee on Privacy and Security is preparing a summary of its recent hearings on PHRs and expects to present something for discussion in September. The Subcommittee will hold a series of conference calls through the summer, and encourages other NCVHS members to participate.

Ms. Greenberg called attention to the newly published compendium of NCVHS privacy recommendations between 2006 and 2008. She acknowledged the contributions of Ms. Jackson and Ms. Kanaan to producing it. It will be sent to the NCVHS mailing list plus others suggested by members.

Dr. Warren reported that the Subcommittee on Standards plans a conference call in July to plan next steps. Among other things, it will be working on its next annual report on HIPAA implementation; and it has been asked to look at ICD-10 implementation.

Dr. Suarez observed that every Subcommittee is looking at immediate priorities, and he proposed that it was time to start considering “a vision of the Committee’s next set of visionary activities.” Ms. Greenberg suggested the possibility of a full Committee retreat in another year or two, to pursue this exploration. Mr. Reynolds recommended thinking ahead to 2015 as the appropriate timeframe. He stressed that the central question is always how NCVHS can continue to make a difference, as it has throughout its history.

With that, he adjourned the meeting.


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

/s/ September 22, 2009

Chair, Date