The Subcommittee on Populations of the National Committee on Vital and Health Statistics convened on June 16, 1998, in the Hubert H. Humphrey Building in Washington, D.C. Present:
Lisa I. Iezzoni, M.D., M.S., Chair
Hortensio Amaro, Ph.D.
Richard
Harding, M.D.
Vincent Mor, Ph.D.
Elizabeth Ward, M.N.
Carolyn Rimes
Olivia Carter-Pokras, Ph.D.
Dale Hitchcock
David
Brown (for Ronald Manderscheid)
Kathryn L. Coltin, M.P.H., NCVHS Committee Member
Don Detmer, M.D.,
NCVHS Committee Member
Daniel Friedman, Ph.D., NCVHS Committee Member
John R. Lumpkin, M.D., M.P.H., NCVHS Committee Member
Barbara
Starfield, M.D., NCVHS Committee Member
James Scanlon, Office of the
Assistant Secretary for Planning and Evaluation (OASPE)
Lynnette
Araki, National Center for Health Statistics (NCHS)
Jennifer Madans,
NCHS
Marjorie Greenberg, NCHS
Edward Sondik, Ph.D., NCHS
Harriet
Starr, Quality Improvement Program, IPRO
Clyde Tucker, Bureau of
Labor Statistics (BLS)
Joan Turek, Office of the Assistant Secretary
for Planning and Evaluation
Roylinne Wada, Department of the Interior
Katherine Wallman, Office of Management and Budget
Nancy Gordon,
U.S. Bureau of the Census
Leon Goe, Health Care Financing
Administration
James Weed, NCHS
Claire Rodrigus, Fordham
University
Janet Spinks, AQUAS
Jennie Harvell, OASPE
Anne
Markus, Center for Health Policy Research, GWU
Brian Say, NCHS
The Subcommittee on Populations met in break-out session during the NCVHS summer meeting. The Subcommittee is a consolidation of the Subcommittee on Population-Specific Issues and the Workgroup on Population-Based Data of the former Subcommittee on Data Needs, Standards and Security. The reorganization also created a new workgroup for this Subcommittee, the Workgroup on Quality.
The Subcommittee began by discussing plans for the July 14-15 meeting on the Pacific Insular Areas, Puerto Rico, and the Virgin Islands. It was agreed that a synopsis of the meeting and descriptions of the participants would be prepared, and that a governmental official would be invited to give an official welcome.
The Subcommittee was briefed by Harriet Starr about the PRO analysis and IPRO's role in analyzing race and ethnicity data. She described some of IPRO's findings about racial and ethnic differentials in the areas of cardiac catheterization, radical prostatectomy, and carotid endarterectomy.
Next, the group heard presentations from Katherine Wallman of OMB and Clyde Tucker of BLS, Nancy Gordon of the U.S. Bureau of the Census, and Jennifer Madans of NCHS on their work on vital statistics in the wake of OMB's revised standard for reporting data on race and ethnicity. Related issues include collection and tabulation methodologies for a richer set of information and ways to link it with information collected in the past. Clyde Tucker, who heads an initiative in this area, noted that tabulation issues affect data from the Census, national surveys, vital statistics, crime rates, and other information sources. Analysts have begun work to separate out what would have been true changes over time from those that are methodologically induced by changing the standard. Ms. Gordon explained the Census Bureau's work on race and ethnicity questions and the plans for Research Data Centers. Ms. Madans described the National Center's work on numerous comparability and tabulation issues and its role in providing data for intercensal estimates. NCHS hopes to house a Research Data Center.
Dan Friedman and Ed Sondik briefed the Subcommittee on ongoing planning for a consultation on a vision of health data needs for the 21st century. The focal event envisioned is a workshop (or two), and background papers will be commissioned as well. Dr. Sondik proposed that the Committee put this workshop on its agenda for this year, target a date, and constitute a subcommittee to work on it. The draft National Information Infrastructure paper may be useful to this project.
Finally, Ms. Coltin described her vision of the mission of the new Workgroup on Quality, in which Ms. Ward, Dr. Starfield, and Dr. Lumpkin also will participate. The meeting concluded with attention to several organizational matters. There was apparent agreement that a separate Workgroup on Population-Based Data is not necessary, and that the entire Committee should serve in an advisory capacity to NCHS. The next Subcommittee meeting is September 17.
Dr. Iezzoni convened the meeting at 2:45 p.m.
Participants discussed the prospective attendees at the meeting and the appropriate protocol, and Dr. Iezzoni requested that a synopsis be prepared of whom to expect, the correct pronunciation of their names, and a biographical sketch. It was suggested that formal dinner plans be arranged for the attendees and that security arrangements be made to expedite their entry into the building for the meeting.
Participants thanked Ms. Wada for her contributions to the effort.
It was decided that the U.S. delegation should include an additional person from SAMHSA, one familiar with block grants.
Ms. Starr described IPRO, a not-for-profit organization incorporated in 1983 committed to assessing and improving the value of health care services received by consumers through the use of innovative methods and technologies. IPRO, whose major public clients are the Health Care Financing Administration (HCFA) and a number of states, looks at patterns of care. Ms. Starr described the company's major data sources for Medicare, Medicaid, and other projects.
IPRO's Health Care Quality Improvement Program implemented in 1994, represents part of the Medicare scope of their work. Patterns of care are examined with an underlying philosophy that improvement of processes will result in more widespread and, through voluntary cooperation, longer-lasting improvements for a larger proportion of Medicare beneficiaries than would happen by merely identifying aberrant providers on a one-by-one basis.
In terms of its methodology, IPRO develops ideas through the literature; through established guidelines, such as those from AHCPR; and through speaking with the physician community, Medicare beneficiaries, and other stakeholders. The organization identifies appropriate indicators and develops reliable tools and processes, and trains staff. Ms. Starr identified a number of projects on which her organization has worked, including cardiac catheterization, radical prostatectomy, and carotid endarterectomy, in which she stated they have seen very dramatic influences of race.
Radical prostatectomy. A quality improvement project on radical prostatectomy collected clinical information on the scope, dimensions, and pathology of tumors, and compared race for prostate cancer and radical prostatectomy among blacks and whites in the New York State Medicare population. One limitation of the 1991-93 inpatient data is that they do not reflect the growing identification of prostate cancer through PSA screening. Although the data for radical prostatectomy showed low incidence, the rate was increasing.
The data showed that the rate of prostate cancer in the black population is significantly higher than for whites, and although the increase in radical prostatectomies among blacks was higher than for whites, the increase did not catch up over the time period examined. The pattern generally held for the various age groups. In the 65-to-69 age group, the rate of radical prostatectomy was 282 per 100,000 male Medicare beneficiaries for blacks and 210 per 100,000 male Medicare beneficiaries for whites, and the same patterns of higher rates for prostate cancer and lower rates for radical prostatectomy can be seen at all age groups, with the exception of the under-65 group. Another limitation is that the data, which were derived from hospital inpatient bills do not reflect outpatient utilization.
Carotid endarterectomy. IPRO has presented to hospitals a series of comparison reports on carotid endarterectomy, a high benefit/high risk procedure that can be effective in reducing mortality from strokes, but that can also bring on strokes. The data looked at both utilization of the procedure and 30-day mortality, using 1993-95 Medicare inpatient data.
Ms. Starr explained the methodology of the study and parenthetically noted a significant inverse relationship between hospital volume and mortality. It was found during the three-year study that only 240 cases were black patients, 2 percent of all casesÄan "astonishingly low" rate in the use of the procedure in the black Medicare population in New York.
Cardiac catheterization. IPRO conducted a study to consider the value and necessity, and the demographics, of performing a right-heart catheterization along with a left-heart catheterization for coronary artery disease. Among other things, the study showed that in the first 6 months of 1992, 293 catheterizations per 100,000 Medicare beneficiaries were performed; during the same time period in 1996, the rate had increased to 372, whereas the corresponding rate of bilateral catheterizations diminished from 89 to 65 per 100,000. Although the trends were replicated in the racial breakdowns, whites received significantly more catheterizations per 100,000 beneficiaries, but also higher rates of bilateral, although they had declined similarly.
Summary. Rates of usage are different among racial groups in the Medicare population. Ms. Starr postulated that this may be true because there is differential access to both diagnosis and treatment, or possibly because of financial considerations related to socioeconomic status overlaps with the use of Part B premiums, deductibles, etc.
For radical prostatectomy, the literature reports that blacks are diagnosed at a later stage of prostate cancer, which may lead to more inoperable cases ineligible for such surgery. In addition, in New York, life expectancy among black males is 63 years.
Discussion. IPRO used data from 53 catheterization labs connected with hospitals; for other projects, data from 300 hospitals were used. Interhospital differences are routinely examined and reported back to the hospitals, but these data do not explain access-to-treatment issues. Ms. Starr said comorbidities are now factored into the studies, while the effect of comorbidities was not the focus of earlier studies.
Members of the Committee discussed the issue of the lack of validity of various aspects of the analyses, including restricted population denominators, i.e., limited to patients who are hospitalized, and race coding. Members cautioned against interpreting the data because they were population based data. Ms. Starr agreed that this information, especially when it is based on observational data, is suspect and is considered to be anecdotal evidence. Provider improvements in the quality of their race and ethnicity reporting are beyond the scope of IPRO’s current clinical quality improvement efforts.
Dr. Iezzoni noted that Harry Rosenberg submitted written comments, which were distributed to the participants.
Ms. Wallman stated that for more than four years, government staff have reviewed the standard for collection of data on race and ethnicity and the implications of increasing intermarriage and immigration, and the resultant trend of increasing numbers in the population of individuals of multiple heritage.
Based on work by a 30-agency Committee, OMB issued on October 30, 1997, a revised standard to permit respondents to Federal Government requests for information to list more than one race if respondents wish to do so. Related issues include the collection and tabulation methodologies for this richer set of information, and ways to link the new data with information collected in the past. Ms. Wallman noted that race/ethnicity issues mirror those recently faced by those who collect economic data when it was recognized that the U.S. economy had shifted from a manufacturing to a service orientation.
Ms. Wallman introduced Clyde Tucker, who is leading the initiative to develop guidelines for ways to present the data. She emphasized that these guidelines are not intended to be a single standard or a regulation. Mr. Tucker noted that tabulation issues involve data from the census, national surveys, vital statistics, crime rates, and other information sources.
The October 30 notice cited two types of users: those with the responsibility to carry out legislative mandates and those who monitor economic and social trends over time. Users might wish to look at the full distribution of the possible combinations at different geographic levels, or they might wish to see all-inclusive data, which provides complete distribution of all responses (adding up to more than 100 percent of the respondents); or they might wish to collapse the categories for various uses.
Analysts have begun work to separate out what would have been true changes over time versus those that may have been methodologically induced as a result of changing the standardÄ- the "bridge" task. They have also focused on concerns about the ongoing collection of statistics when the denominator is based on census figures. Examples include: vital statistics, crime rates, and estimates from national surveys (in using census population controls).
One group is working specifically on the bridge task and another on procedural design (telephone, self-administered, personal interviews, mail, etc.). The procedural design group will also look at collecting aggregate data, such as school enrollment data. Another group is studying future trends and how to reflect them in data collection and analysis. A number of approaches are being investigated, including the collapsing of categories and algorithmic and non-algorithmic assessments. Part of the investigative process includes simulation research to determine which of these methods might be most appropriate under which conditions.
Ms. Gordon distributed a handout presenting the questions on ethnicity and race that are part of the Census 2000 Dress Rehearsal. Included are 15 check-off boxes and 3 write-in lines. Because all the data are retained, researchers can specify their own tabulations, and confidentiality is maintained.
One of the Census Bureau's most important products is used in the enforcement of the Voting Rights Act. A "huge array" of data is amassed, i.e., 63 different racial categories and up to 266 possible cells for every block in the countryÄwhich shows numbers of people, but not characteristics. Work is ongoing with the Justice Department to sort out the balance between protecting confidentiality and meeting the requirements of the law.
Because the full distribution is not useful for many analytical purposes, analysts are looking at possible ways that data can be collapsed. Ms. Gordon described some possible arrays of data by which to report race, including multiple categories of race. She noted that the new standard was adopted in part because of concerns related to health research, i.e., knowing the background of individuals is important to understanding more about certain diseases linked to one's racial heritage.
The Census Bureau has developed an organizational structure called Research Data Centers, in which, under strictly controlled circumstances, researchers are permitted access to data protected by Title 13. The researchers are sworn in and are subject to both financial penalties and jail terms if they divulge data.
Ms. Madans noted that negotiations are underway with the Census Bureau to locate a research data center at NCHS, and that an HHS data center is also anticipated.
NCHS is involved with two separate but related kinds of activities. One issue involves vital statistics. NCHS is ensuring that data collected for numerators will match with what Census is collecting for denominators, thus maintaining meaningful rates. The other activity is to supply the Census Bureau with data to incorporate into intercensal estimates.
Related NCHS actions include: reevaluating birth and death certificates to make numerators and denominators as comparable as possible, evaluating how the collection of race and ethnicity data on provider-based surveys, the analysis of NHIS data. NHIS has collected (but not published) multiple race categories since 1982. A report will be issued to explain what happened over time using this data collection approach. Separate reports will examine health outcomes vis-a-vis single race and multiple race. If someone reports multiple races, NHIS also asks which is the race that person relates to more strongly.
For major health indicators, the plan is to run both for several years and then pick up on the new line, depending on how quickly society changes. Ms. Gordon stated that a change of around 2 or 3 percent will make little difference. Initial findings of the analysis show a large age effect; most of the multiple race data are being reported among younger people, and it will be interesting to see if that changes over time. Actual results may be forthcoming within several months.
Dr. Friedman noted that as NCHS tries to align vital statistics data with the new census data, there appears to be both a classification issue and an issue about self-report versus observation. Ms. Madans concurred, stating that birth certificates will be easier to deal with, but it is unlikely that death certificates will give any multiple race information and may make the problem worse. To ameliorate this problem, she suggested the use of more reliance on matched files; the HIS is routinely matched to the National Death Index. In infant mortality, only the linked file is used to look at race differentials. Ms. Madans was hopeful that increased education of personnel who complete the forms and the increased use of electronic records will have a beneficial effect on quality.
In response to a question on privacy issues, Ms. Gordon explained Title 13, which governs the Census Bureau's protection of data confidentiality, and some tactics the Census Bureau uses with its public-use files to preserve confidentiality, particularly for records detailing sparsely populated geographical areas.
With help from the National Science Foundation (NSF) in a competitive process, the Census Bureau is gradually expanding the number of research data centers. Researchers must submit a proposal, which must be accepted by NSF and the Census Bureau. One of the acceptance criteria is that the proposed analyses must be of benefit to the Census Bureau as well as to the greater understanding of phenomena in the world. Successful researchers are given access only to the data necessary for that project, and the data must remain at the data center. Projects that produce regression coefficients, for example, are favored over those that produce tabular results, again for confidentiality reasons.
It was acknowledged that age adjustment changes will be problematical, as will the state CHIP program, which will require population-based data and not administrative data. Ms. Wallman encouraged continued input concerning the guidelines from Subcommittee members.
Dr. Friedman described the history and purpose of this proposed workshop and acknowledged the individuals who have been part of it. The planning Workgroup has developed a draft work plan that focuses on the following goals: (1) developing a 21st century vision for health statistics, (2) specifying that vision in terms of the role NCHS should play in implementing it, and (3) developing specific operational steps for NCHS. The draft work plan was distributed to members of the Subcommittee.
The group discussed developing a 21st century vision, among other things, to define health statistics in terms of its purpose, roles, and boundaries through focus groups. They also explored trying to identify (1) the criteria through which health statistics systems could be evaluated and (2) a process through which to examine recommendations that have evolved relating to health statistics and their systems, and the implementation of those systems.
Dr. Sondik asserted that NCHS needs advice on many of its choices, especially in light of its very tight budget. Much of the advice it has received over the years has become outdated, either because of advancing technology or inaction. Sponsoring a workshop and involving the broad health statistics community is seen as a way to elicit timely advice.
Among the participants envisioned would be the Committee on National Statistics, whose proposed role would be either to prepare or to commission a synthesis of the advice received over the past several years. The National Committee on Vital and Health Statistics could focus on a draft vision statement regarding where we should be in 2005 and 2010.
Dr. Sondik suggested providing participants with documents to which they could react, to focus the workshop process. The paper(s) would be very useful in differentiating health statistics and the mission of health statistics agencies within HHS, and some of the allied agencies, such as the Census Bureau, from broader information issues.
Dr. Sondik proposed that the Committee put this workshop on its agenda for this year, target a date, and constitute a subcommittee to work on it.
Dr. Detmer suggested that the draft National Information Infrastructure paper would be useful to this project.
A tentative budget has been prepared, but concern was expressed about the availability of funding. Mr. Scanlon said the Department would be able to help with funding. Foundations might also be approached for assistance.
A key part of this workshop would be the commissioning in advance of thoughtful papers on the issues of the future. The proposed tight time line is necessary to get timely guidance from the workshop.
Mr. Scanlon noted his awareness of broad support for the workshop among individuals within HHS and other agencies who wish to participate in its planning.
Discussion on the timing of the workshop was scheduled for the following day's Committee meeting. Dr. Sondik briefly explained his conception of the time frame and the work commitment required of the Committee members, and other participants pointed to the importance of setting deadlines and time requirements for RFP development, etc.
The planning group would be responsible for deciding the topics of the papers to be commissioned.
The discussion concluded with a statement by Dr. Iezzoni that the workshop would be in the best interests of all, that it speaks to the goals of the NCVHS as a whole and this Subcommittee in particular.
Ms. Coltin described her vision of the mission of the Workgroup on quality: focusing mostly on building blocks for measuring qualityÄthe data infrastructure that supports the ability to create measures of quality. The Workgroup would collect information from developers of quality measures for various care settings for various populations on what they viewed as major data limitations.
Another activity would be to examine the President's Advisory Commission Report and to look at the data needs and data limitations that may affect their ability to move forward on any objectives. Good data are available on morbidity, mortality, and prevalence of various conditions, but it is not as well known where the problems are and what data are most relevant.
The starting point would be to assess the adequacy of information to support priority- setting. The next step would be to examine the data limitations in high- priority areas. For example, a clear objective is to try to reduce errors in health care; related data issues include learning what kinds of data would be needed to develop an error-tracking system, what data are available now, what works, what does not work, what would be necessary to put in place such a system.
It will be essential to build on the road map developed by NCQA, but it will be necessary also to look at the enabling and constraining forces around implementing the road map.
Elizabeth Ward, Barbara Starfield, and John Lumpkin have agreed to participate in this effort. A quorum rule was discussed; a quorum of five is necessary for this Subcommittee, but a quorum can be constituted by members of the larger Committee. Hearings are more effective under the auspices of a subcommittee than a workgroup.
Dr. Iezzoni stated that she expected the focus to go beyond administrative data and that the Workgroup on computerized patient records would be asked about certain issues. Measuring functional status was expected to be a key issue, because clinical end points only go so far.
Ms. Coltin suggested that the issue of linkage of public and private data would be of interest.
Ms. Greenberg noted that since the Committee had not focused on core data elements or on putting functional status into administrative transactions, these may be issues for the Subcommittee to address. Dr. Iezzoni stated that it is also important to focus on the post-acute care data issues.
Dr. Starfield suggested that unclear work plans of some new workgroups may interfere with members deciding to join in their work.
Dr. Iezzoni suggested that a Workgroup on Population-Based Data will not be necessary within the Subcommittee on Populations.
Members discussed the appropriate administrative "pigeon hole" for the workshop and the ongoing advice function to NCHS. The consensus was that subcommittees were necessary to focus on certain issues, but that the Committee as a whole would wish to weigh in on materials that come forward and to continue to serve in an advisory capacity.
The Office of Minority Health was acknowledged for their support.
Members discussed the logistical difficulties of attending simultaneous subcommittee meetings. The next scheduled full Committee meeting will be September 15 and 16, and the Subcommittee meeting will be September 17. The agenda will be to discuss Medicaid managed care survey integration, follow-up on the Workgroup on quality, and discuss communicating as a group.
Dr. Iezzoni then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ Lisa I. Iezzoni 10-07-98
Lisa I. Iezzoni, Chair Date