Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

September 1-2, 2004

Hubert H. Humphrey Building
Washington, D.C.

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on September 1-2, 2004 at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:

Committee members

  • John R. Lumpkin, M.D., M.P.H., Chair
  • Jeffrey Blair, M.B.A.
  • Justine M. Carr, M.D.
  • Simon P. Cohn, M.D., M.P.H., FACP
  • Richard K. Harding, M.D.
  • John P. Houston, Esq.
  • Stanley M. Huff, M.D.
  • Robert W. Hungate
  • Eugene Lengerich, V.M.D.
  • A. Russell Localio, Esq., M.A., M.P.H., M.S.
  • Vickie Mays, Ph.D.
  • Harry Reynolds
  • Mark A. Rothstein, J.D.
  • C. Eugene Steuerle, Ph.D.
  • Kevin C. Vigilante, M.D., M.P.H.
  • Judith Warren, Ph.D, RN

Absent:

  • Peggy B. Handrich
  • Donald M. Steinwachs, Ph.D.

Staff and liaisons

  • Marjorie Greenberg, NCHS/CDC, Executive Secretary
  • James Scanlon, ASPE, Executive Staff Director
  • J. Michael Fitzmaurice, Ph.D., AHRQ liaison
  • Judith Berek, CMS liaison
  • Virginia Cain, NIH liaison
  • Charles Rothwell, NCHS (for Ed Sondik, Ph.D., NCHS liaison)
  • Steve Steindel, Ph.D., CDC liaison
  • Aldonna Robbins, NCHS BSC liaison

Others

  • Jackie Adler, NCHS
  • Katherine Jones, NCHS
  • Debbie Jackson, NCHS
  • Dan Rode, AHIMA
  • Danielle Drissel, Hogan & Hartson
  • Jason DuBois, ACLA
  • Frank Kyle, American Dental Assn.
  • Laura Vartain, Wexler & Walker
  • Bill Alfano, BlueCross BlueShield Assn.
  • Stan Edinger, AHRQ
  • Emily Steward, Health Privacy Project
  • Mark Mantooth, HHS
  • Douglas Peddicord, Washington Health Advocates
  • Marilyn Zigmund Luke, AHIP
  • Dan Landrigan, Atlantic Information Services
  • Irene Dworakowski, American College of Surgeons
  • Meryl Bloomrosen, eHealth Initiative
  • Audrey Burwell, OMH
  • Louis Diamond, Medstat
  • Bobbie Peterson, CSC
  • Ken Whittemore, SureScripts
  • Andrew Kasper, FDC Reports
  • Phillip Rothermich, Express Scripts
  • Edward Garcia, Washington Health Advocates
  • Bob Kambric, ASPE
  • Cynthia Wark, CMS
  • Andrew Kasper, FDC Reports
  • Dinah Wiley, OCR

EXECUTIVE SUMMARY

ACTIONS

  1. The Committee passed a motion approving a letter to the Secretary on the privacy rule and marketing, drafted by the Subcommittee on Privacy and Confidentiality.
  2. The Committee passed a motion approving, as revised, a letter to the Secretary on the privacy rule and fundraising, also drafted by the Subcommittee on Privacy and Confidentiality.
  3. The Committee passed a motion approving a letter recognizing the public service of Privacy Advocate John Fanning on the occasion of his retirement from HHS and emphasizing the importance of this position.
  4. The Committee passed a motion approving a revised letter to the Secretary, summarizing the presentations to the NHII Workgroup on July 23, at the end of the NHII Conference.
  5. The Committee passed a motion approving a revised version of a letter to the Secretary with the first set of recommendations on e-prescribing, as developed by the Subcommittee on Standards and Security.

All official NCVHS documents are posted on the NCVHS Web site.

UPDATE FROM THE DEPARTMENT

Mr. Scanlon briefed the Committee on recent Departmental activities related to health information technology and data policy, FY2005 budget proposals and early thinking about FY2006, and the Data Council’s plans for the near term.

Ms. Friedman reviewed recent activities related to HIPAA implementation and CHI. Dr. Cohn observed that given the importance of mapping issues, the Committee might want an update from NLM soon.

Ms. McAndrew reported on the status of privacy rule enforcement and outreach.

Mr. Localio and Dr. Mays voiced concerns from the research community about ways in which the privacy rule hinders medical research. Dr. Fitzmaurice described studies and workshops on these concerns being conducted by AHRQ, and Ms. McAndrew said OCR is working through some research issues with NIH. Mr. Houston repeated past requests for statistics, and Ms. McAndrew said OCR is working on producing a useful report. To a query from Dr. Steuerle, Mr. Scanlon said ASPE has concluded that it is very difficult to come up with an adequate research design for assessing the costs and benefits of the privacy rule, and he welcomed suggestions from the Committee about both the objective and the methodology of such a study. Mr. Rothstein expressed concern about a new OHRP guidance on research repositories that widens the rift between the privacy rule and the common rule, contrary to a NCVHS recommendation.

Letters: Subcommittee on Privacy and Confidentiality and NHII Workgroup

(The Committee’s actions on three letters on privacy and one on the July 23 NHII conference presentations are described in the Actions section, above.)

Letter on e-Prescribing—Dr. Cohn

After a summer of hard work and extensive hearings, the Subcommittee on Standards and Security presented to the Committee a draft letter to the Secretary containing the first set of recommendations on e-prescribing, with a second set of recommendations to be presented in March 2005 following additional hearings. Thanks were extended to Mr. Blair, Ms. Friedman, Subcommittee members, staff, agency liaisons, writer/consultant Margaret Amatayakul, and Dr. Cohn. Mr. Blair stressed that these recommendations “very closely reflect the advice and guidance of the e-prescribing industry.” Dr. Cohn read aloud the letter, which has 16 observations and 40 recommendations, pausing periodically for comments and suggestions. Following discussion, the draft letter was referred to the Subcommittee for revision. On day two, the revised letter was presented, discussed, revised further, and approved as revised.

Briefing on Executive Subcommittee Retreat—Dr. Lumpkin

At its August retreat in Princeton, NJ, the Executive Subcommittee reviewed recent NCVHS activities and plans for the future in the light of the rapid transformations underway in the health information policy arena. Dr. Lumpkin pointed out that more then ever in this fast-moving environment, the Committee must be selective about the projects it undertakes. He also noted the progress being made in the population health area.

The Executive Subcommittee made several decisions on external relations, including offering specific assistance to Dr. Brailer’s office, planning joint activities with the NCHS Board of Scientific Counselors, and asking for key contacts at the Census Bureau, the Department of Homeland Security, and EPA. It also decided to consolidate and prioritize past and present research recommendations to the Department, in an attempt to heighten their effectiveness. All subcommittees and workgroups were asked to pull together the research recommendations in their domain. This topic will be included in the report on NCVHS activities and accomplishments in 2003-04.

Population Health Panel on Race, Ethnicity and Socioeconomic Position

Suzanne Heurtin-Roberts, Ph.D., Coordinator for Health Disparities, NCI

Dr. Heurtin-Roberts began by discussing the reasons for confusion about race and ethnicity and the correct definitions of each one. She stressed that they are not the same. Race is the categorization of parts of a population based on the physical appearance of people due to particular historical, social and political forces. It has no genetic basis. To understand the biological variation among humans, she explained the idea of a cline, a single trait genetic gradient over space and different environments. Ethnicity is the quality of being from an ethnic group, a subcultural group of a multicultural society, usually based on a common national or tribal heritage. Culture is learned, not inherited, and it is based on multiple factors and influences. Ethnic groups are not necessarily tied to specific geographic locations. Both ethnicity and race are subjective and situationally variable. Not everyone in an ethnic group shares the same culture; race does not equal ethnicity; and not all ethnic group members are necessarily the same race. Dr. Heurtin-Roberts stressed that while these are social constructs, race and ethnicity are important for data collection because they are significant in health and in society. She identified a number of measurement issues that must be resolved in order to use race and ethnicity data to monitor and improve population health.

Virginia Cain, Ph.D., Acting Assoc. Director, Ofc. of Behavioral and Social Science Research, NIH

Dr. Cain focused on the relationship of health to socioeconomic position (SEP), defined as the social and economic factors that influence what position individuals and groups hold within the structure of society. Traditional research has focused on socioeconomic status (SES) and its links to health. The most common SES measures are income, education, and occupation, each of which has an important impact on health and is a powerful indicator of health outcomes. The shift in focus to SEP involves adding the variable of wealth, thus providing information on the extent to which individuals or families have a buffer against social or economic stresses such as unemployment or divorce. In recent years, researchers have also studied the neighborhood effect: the characteristics of communities and neighborhoods in terms of their effect on individuals living in them. Dr. Cain concluded with comments on data and research needs for the future.

Subcommittee and Workgroup Reports; Future Agendas

(Please see the brief summaries at the end of the Summary section below.)

DETAILED SUMMARY

—DAY ONE—

CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA

Dr. Lumpkin called the meeting to order, reviewed the agenda, and asked all present to introduce themselves.

Update from the Department

Data Council—Jim Scanlon, ASPE

There was considerable activity over the summer related to health information technology and data policy. As described in the June NCVHS minutes, the Secretary made three major announcements at a May 6 summit. On July 21, HHS held the NHII conference, at which the new National Coordinator for Health Information Technology, Dr. David Brailer, released a framework for strategic action. The conference concluded with a public meeting of the NHII Workgroup at which findings and recommendations from the breakout sessions were presented.

Mr. Scanlon reviewed the President’s budget requests for FY05 and the early thinking about the FY06 budget. The 05 budget continues the joint AHRQ/ASPE data standards initiative and funds AHRQ to improve patient safety through health information technology. It invests $50 million, through OS, in demonstrations of community and regional data exchange networks and interoperability. In population statistics, NCHS receives a $25 million increase for core statistical systems.

In other activities, in the coming months the Data Council will work on e-prescribing and data gaps related to prescription drug utilization and expenditures; will convene HHS agencies and the Census Bureau to look at national and state health insurance data and related data; and will look at income and wealth measurement.

Discussion

Responding to a question from Dr. Mays about the most effective way for the Subcommittee on Populations to track responses to its recommendations and to keep them before the Data Council, Mr. Scanlon assured the Committee that all its recommendations are factored into budget planning.

HIPAA Implementation—Maria Friedman, CMS

The claims attachment regulation is scheduled for December 2004. The Department has received 168 complaints. 145 are related to transactions and code sets violations; 23, related to privacy, were referred to OCR; 58 are open; 43 were deemed invalid; and 44 were resolved. There are five open and active corrective action plans.

CMS is working with the Office of the National Coordinator of Health Information Technology (ONCHIT) to coordinate CHI and FHA. Phase two activities for CHI are in three areas: standards implementation, standards maintenance and improvement; and the need for new standards.

Dr. Cohn observed that given the importance of mapping issues, the Committee might want an update from NLM soon.

Privacy rule compliance—Sue McAndrew, OCR

Through August, OCR received roughly 8,100 complaints. It has issued no civil monetary penalties. Typically, it closes about a third of the cases for non-jurisdiction or failure to allege a violation. About 15 percent are closed following corrective action. Most of the remaining group concern coding issues. OCR has made about 125 criminal referrals to the Department of Justice, and there has been one criminal prosecution under HIPAA for identity theft.

OCR has posted new fact sheets for consumers about individual privacy rights, and has a new FAQ about disclosures to law enforcement, responding to a NCVHS recommendation. It is working on additional FAQs in this area.

Mr. Localio reiterated past concerns in the research community about ways in which the privacy rule hinders medical research, contrary to claims in OCR literature, and asked if HHS is assessing or addressing this situation. Ms. McAndrew said no assessment has been done, to her knowledge, but OCR is in dialogue with the research community and is working the issues through with NIH and others, covering the concerns of researchers both within and outside the NIH orbit.

Mr. Houston repeated past requests for concrete statistics, and Ms. McAndrew said OCR is working on producing a useful report.

Dr. Steuerle asked whether the Department was gathering data on the cost of the privacy provisions, or if the Committee should look at this question. Mr. Scanlon said ASPE has found it difficult to come up with an adequate research design, and it would welcome suggestions from the Committee about both the objective and the methodology of such a study.

Dr. Fitzmaurice said AHRQ is funding a contract to determine the burden of the privacy rule on researchers, and with Academy Health has held two workshops for the research community and an expert meeting. The sense is that the burden of the privacy rule is tied up with the burden of the common rule.

Mr. Rothstein reminded the group that NCVHS wrote the Secretary in June 2003 urging establishment of a formal mechanism for assessing the costs and benefits of the privacy rule and whether it was actually improving the privacy of health information. He added that on August 10, OHRP issued new guidance on research repositories that widens the rift between the privacy rule and the common rule, contrary to the NCVHS recommendation that the Department try to harmonize the two.

Privacy Letters—Mr. Rothstein

Mr. Rothstein reviewed the major points of a letter on the privacy rule and marketing, drafted by the Subcommittee on Privacy and Confidentiality. The Committee passed a motion approving this letter.

The second letter presented concerns fundraising. Committee member comments focused on the importance of showing attentiveness to consumer/ patient perspectives on this practice. Health care facilities’ need to do fundraising was also noted, and the group discussed the principles involved in balancing patient privacy and the need for institutional fundraising. The letter was referred back to the Subcommittee for revision, for action on day two of this meeting.

The third letter recognizes the public service of Privacy Advocate John Fanning on the occasion of his retirement from HHS. The Committee passed a motion approving this letter and emphasizing the importance of the position.

NHII Letter—Dr. Lumpkin

Dr. Lumpkin presented a letter to the Secretary, summarizing the presentations to the Workgroup on July 23, at the end of the NHII Conference. The letter (which is posted on the Web site, with all other official letters) identifies seven areas in which additional work is needed and offers to assist in developing strategies. The areas include the use of master patient indexes and issues related to patient control of their personal health information. After a few friendly amendments, the Committee passed a motion approving the letter.

Letter on e-Prescribing—Dr. Cohn

Dr. Lumpkin congratulated the Subcommittee on Standards and Security on its productivity and thanked them for their hard work throughout the summer, which resulted in a draft letter to the Secretary with the first set of recommendations on e-prescribing. In a series of hearings on the subject, the Subcommittee received testimony from about 65 people.

Dr. Cohn said the Subcommittee plans to present a second set of recommendations in March, following additional hearings. He thanked Mr. Blair for being instrumental in developing the work plan and moving it forward, as well as Ms. Friedman, the Subcommittee members, staff members, agency liaisons, and writer/consultant Margaret Amatayakul.

Mr. Blair stressed that these recommendations “very closely reflect the advice and guidance of the e-prescribing industry.” Dr. Cohn added that this was a very open process, and the industry felt they were heard.

Dr. Cohn then read aloud the letter, which has 16 observations and 40 recommendations, pausing periodically for Committee member comments and suggestions. At the outset, the group agreed that the e-prescribing standards must not only meet the requirements of MMA and the ambulatory care environment, but also be compatible with all other standards.

Ms. Amatayakul briefly described the e-prescribing process for the Committee, and Dr. Cohn pointed out the number of communication transactions involved, making it sensible to computerize the process.

Members offered few editorial comments on the letter, which Ms. Berek attributed to its clarity in explaining the issues and problems and presenting recommendations. One topic that did generate considerable discussion is the privacy, quality of care and other issues surrounding a possible function notifying providers of the fill status of prescriptions. The privacy issues involved will be investigated by the Subcommittee on Privacy and Confidentiality in the context of a broader look at privacy issues and e-prescribing. The broad privacy question, according to Mr. Rothstein, is how much control patients should have over their own health information as the health care system becomes increasingly electronic.

Mr. Reynolds stressed the need to comprehend what is a “picture of an entirely new process” for prescribing and filling prescriptions before judging a single facet. He and others also stressed that what is envisioned is a bi-directional information and communication system, all of which is intended to enhance the quality of care.

Mr. Localio generated extensive discussion by raising questions about the type of pilot tests to be recommended and what is feasible, given the short time frame allowed in the law (one year, starting 1/1/06). Dr. Cohn said the intent is to test both the practical workability of the standards and the economic and patient care consequences of the proposed changes. Dr. Steindel observed that a “natural experiment” is already underway.

Mr. Localio also expressed concern about the wisdom of relying on the VA’s timely completion of NDF-RT as a prerequisite for pilot testing—wondering, in Dr. Cohn’s words, “how much is good to go.” Mr. Blair said the Subcommittee shares these concerns and he invited suggestions of how to be “both emphatic and constructive.” Others spoke on the status of NDF-RT and other systems (e.g., Rx-Norm) to the effect that the pieces do exist for the pilot to work. Ms. Auld of NLM said that much of the mapping has already been done and just needs to be tested. Ms. Berek said the Secretary and CMS administrator have been aggressive about making this happen on time, raising the chances of that outcome. Mr. Localio expressed some doubt about the quality of the outcome. Dr. Steindel stressed the need to create an atmosphere within FDA to expeditiously promote needed regulatory changes.

From the audience, Phil Rothermich of Express Scripts pointed out that software vendors need lead time to change their systems to accommodate the functionality needed in the pilots. Members noted the implications for a public timeline.

Regarding SIG standards, Dr. Lumpkin raised the need for mechanisms to communicate information on patient-specific characteristics (e.g., non-English language, cultural factors, disability) that is needed to ensure usable instructions.

Finally, members discussed the implications (privacy and otherwise) of e-prescribing for consumers/patients and what should be done to identify barriers on the consumer side, to inform them about the change, and to monitor their reactions in the pilot test. The importance of informed participation was stressed.

The letter concludes by listing the topics the Subcommittee plans to address in forthcoming hearings and recommendations. The Committee will offer to assist the Department by reviewing plans for the pilot test.

The proposed revisions to this letter were referred to the Subcommittee on Standards and Security, which will present a revised version on day two of this meeting.

Mr. Blair and the Committee acknowledged Dr. Cohn’s leadership in the developmental process for the e-prescribing letter.

The Committee then recessed for subcommittee and workgroup meetings, to reconvene the following day.

—DAY TWO—

Briefing on Executive Subcommittee Retreat—Dr. Lumpkin

This year’s Executive Subcommittee retreat was held in August at the Robert Wood Johnson Foundation headquarters in Princeton. The Subcommittee discussed the current environment, particularly with respect to the transformations around the national health information infrastructure. Dr. Lumpkin traced the evolution of Departmental interest in the NHII, starting with minimal attention following the 2001 release of the NCVHS report on the NHII, through a November 2002 IOM workshop, attended by the Secretary, which featured a panel on the use of information technology, to the Secretary’s current significant level of engagement in these issues and the new activities by ONCHIT. Now both presidential candidates have positions on health information technology. The challenge for the Committee is no longer in being “the only force pushing for many of these issues,” but in selectively choosing the most effective use of its limited resources in the midst of intense activity and rapid change. Added to this are the new roles being assigned to NCVHS, notably by the Medicare Modernization Act in relation to e-prescribing and also by the Department in relation to the July NHII Conference.

Dr. Lumpkin stressed that NCVHS is in a unique and strategic position to address both technical and population-based aspects within one group, an unusual characteristic for advisory groups. He noted that the Committee’s effectiveness comes from a combination of its vision and its specific recommendations, which have a high level of adoption. The Committee can contribute to ensuring that data are not just collected but analyzed, to ensure that they tell a story that leads to high-quality, efficient, effective health care. He reviewed recent activities in the population health area, notably progress in the effort to get race and ethnicity data collected in health care and new collaborations and connections between the Subcommittee on Populations and other NCVHS groups. The population health perspective, which was reaffirmed by the Executive Subcommittee, provides the broad analytic framework for looking at health trends and working for quality improvement.

At its retreat, the Executive Subcommittee made several decisions concerning external relations. It is planning a series of joint activities over the coming year with the NCHS Board of Scientific Counselors, including a joint hearing on quality of life measurement and joint meetings of the executive committees and the full bodies. National HIT Coordinator David Brailer participated in the retreat and has expressed interest in assistance from NCVHS on privacy issues and regional health information organizations. The Subcommittee agreed to ask for key contact persons from the Census Bureau, the EPA and the Department of Homeland Security.

The Subcommittee also agreed to produce a report covering the Committee’s major activities and accomplishments in 2003-04. Finally, it discussed ways to be more effective in its research recommendations to the Department. This topic will be discussed further at the November NCVHS meeting, and it will be addressed in the 2003-2004 biannual report. Ms. Greenberg explained that while many of the Committee’s recommendations have been well received and have influenced Departmental policy, the research recommendations that are part of many communications seem to get lost. The Executive Subcommittee decided to consolidate and prioritize these recommendations in an attempt to make them more effective. She asked subcommittees and workgroups to review the outstanding research recommendations in their purviews, for inclusion in the 2003-04 report.

Discussion

Noting that the pace of the current e-prescribing effort may foreshadow an era of increasing demands on the Committee and its resources, Mr. Blair suggested that the Executive Subcommittee investigate what would be needed to support a generally faster and more intensive pace in the future.

Mr. Rothstein asked how broadly the Committee should construe its mission in terms of advising the Secretary versus other parts of the federal government. Ms. Greenberg responded that while the Committee is first and foremost an advisory committee to the Department, it has historically had a bully pulpit reaching the entire federal government and beyond, including the private sector. Dr. Lumpkin observed that the Committee’s charter to advise the Secretary can be interpreted broadly, but its limited resources create boundaries on what it can undertake.

On behalf of the NCHS Board of Scientific Counselors, Dr. Robbins said she looked forward to joint meetings and activities with NCVHS. The BSC will start by looking at how the Center’s data sets can “support this new world we are moving into.”

Population Health Panel on Race, Ethnicity and Socioeconomic Position

Dr. Mays said the Subcommittee on Populations had organized the following presentations to support the Committee’s efforts around population health. She noted the complexity of the concepts involved in understanding and eliminating health disparities.

Suzanne Heurtin-Roberts, Ph.D., Coordinator for Health Disparities, NCI

Dr. Heurtin-Roberts observed that there is confusion about the terms “race and ethnicity” because these are not only scientific concepts but also terms used in everyday speech. In addition, they are used interchangeably and without definitions, and there are many measurement difficulties.

She defined race as the categorization of parts of a population based on the physical appearance of people due to particular historical, social and political forces. Race is not genetically defined; no clear boundaries can be used to delineate racial genotypes. Rather, race is socially and subjectively defined, based on appearance. As with genotypes, there are no clearly agreed-upon phenotypical (appearance-related) characteristics to delineate boundaries among groups. Racial categories are fluid and differ from  society to society and situation to situation. These categories are contested by persons in the populations involved, creating a negotiated reality.

At the same time, there is clearly biological variation among humans. Dr. Heurtin-Roberts introduced the idea of the cline, a single trait genetic gradient over space and different environments, as an alternative to categorizing groups of people. She showed a world cline map developed by Jablonsky and Chaplin of the California Academy of Sciences, showing skin color gradations. A combination of similar maps for different variables could reveal “tiny breakdowns across the globe of small populations that might share genetic material, but nothing like what we consider race in this country….” There are no hard definitions or clear boundaries, but rather gradations of genetic material that vary with the environment.

Dr. Heurtin-Roberts defined ethnicity as the quality of being from an ethnic group. An ethnic group is a subcultural group of a multicultural society, usually based on a common national or tribal heritage. She noted that culture is learned, not inherited. It is hard to pin down ethnicity because it is based on multiple factors and influences, and ethnic groups are not tied to specific geographic locations. Ethnicity, like race, is situationally variable. It is incorrect to assume that everyone in an ethnic group equally shares the same cultural norms, attitudes and beliefs.  There is variation in the extent of cultural participation within an ethnic group. Other important points are that race does not equal ethnicity, and not all ethnic group members are necessarily the same race.

Turning to multiracial persons, she noted that more than 6 million people identified themselves as of two or more races in the 2000 Census.

She reiterated the difficulty of defining and measuring race and ethnicity, since both are subjective, contested, and context-dependent. One measurement issue concerns the question of lumping versus splitting. Regarding the OMB Directive 15 categories, she noted that the many categories, possible combinations and resultant small numbers necessitate lumping; but when this happens, information is lost. She showed data illustrating the differences among subgroups using breakdowns for Asian Pacific Islanders, among whom there are large income variations.

Another research question concerns whether race and ethnicity can be used as a proxy for other phenomena. This is not possible for biogenetic phenomena, for the reasons discussed above, and it may not be much more useful for social, cultural and behavioral phenomena. However, race does say something about one’s position in society and in a power hierarchy, and race can be used to study biases. For both of these reasons, it is relevant to understanding health risks, discrimination and disparities. Ethnicity is useful in understanding behavior. Research shows that these variables do make a difference in health, notably in research showing the effect of race and sex on provider behavior. Therefore it is important to collect data on race and ethnicity, “however socially constructed they are.”

Virginia Cain, Ph.D., Acting Assoc. Dir., Ofc. of Behavioral and Social Science Research, NIH

Dr. Cain focused on socioeconomic position (SEP) and health. She noted that since the 1950s, when the biological and medical model predominated, there has been an increasing view of health as a function of social, psychological and behavioral factors, all reflected in the SEP. Lynch and Kaplan define SEP as the social and economic factors that influence what position individuals and groups hold within the structure of society. Reviewing the development of measurements of health and its determinants, she showed data indicating that the dramatic improvements in health in recent decades have not applied equally across racial and ethnic groups; improvements in life expectancy for Blacks lag behind those for Whites. SEP is a factor in these differences.

Traditional research has focused on socioeconomic status and its links to health. The most common measures are income, education, and occupation, each of which has an important impact on health and is a powerful indicator of health outcomes.  She showed data illustrating each indicator with respect to several aspects of health outcomes.

The shift in focus to SEP involves adding the variable of wealth, an individual level variable that provides information on the extent to which individuals or families have a buffer against social or economic stresses such as unemployment or divorce. Recent research provides data on the wealth of various racial and ethnic groups in the U.S., showing that Whites have a significant advantage over African-Americans and Hispanics in this respect. Wealth includes savings and real estate equity and other assets.

In recent years, researchers have also studied the neighborhood effect: the characteristics of communities and neighborhoods in terms of their effect on individuals living in them—for example, median or per capita income, education, occupations, social cohesion, and so on. Definitional problems about how to draw the boundaries are still under investigation.

SEP affects health by affecting what choices a person has; psychological pathways such as stress; what is normative in terms of behaviors; environmental and occupational exposures;  and so on. The analysis provides multiple opportunities for intervention. Dr. Cain showed a multiple intervention model proposed by Lynch and Kaplan.

She concluded with comments on data and research needs for the future, highlighting the need for longitudinal data, more sophisticated measures of individual SEP, more and better measures of community-level variables, and better ways to integrate individual measures to determine SEP.

Discussion

Mr. Blair expressed interest in giving further thought to the implications of these presentations for the Committee’s work and for national policy.

Concerning common public information on drug side-effects, Mr. Rothstein commented on the equally unsatisfactory choices of using simplistic and inaccurate generalizations about “racial groups,” e.g., African Americans, or making a more nuanced and correct but unintelligible statement with little communication value. Dr. Heurtin-Roberts commented on the need for much greater public education about what race means and does not mean, something that will take time. She noted the merits of using qualifiers such as “tends to,” adding that her concern in pharmacogenetics is the ecological fallacy in which what is assumed about a larger population interferes with seeing and treating individuals as individuals in a clinical setting.

Dr. Fitzmaurice asked what policy steps might have the greatest impact on reducing disparities given the complex influences, and what information would best support these steps. The speakers commented on the need for complex approaches for complex problems. Dr. Heurtin-Roberts added that the Subcommittee on Populations is working on prioritizing strategies, and Dr. Cain said NIH is funding research trying to determine what factors have the strongest impact on health. Linking data sets is very important to getting at these issues. Dr. Rothwell described some of the questions NCHS is looking at, noting that statisticians have a responsibility to identify the weaknesses in their information when they report it and also to improve research on socioeconomic variables.

Subcommittee and Workgroup Reports

NHII Workgroup—Dr. Lumpkin

The Workgroup is planning its November 12 hearing on the personal health record. Dr. Brailer is expected to attend the November full Committee meeting.

Subcommittee on Privacy and Confidentiality—Mr. Rothstein

The Subcommittee plans hearings for November 18 and 19 on security and privacy issues and e-prescribing and privacy. It is also planning a mid-January (11-12) meeting.

Turning to the revised version of the letter on fundraising and the privacy rule, Mr. Rothstein described the revisions and the thinking behind them. The Committee passed a motion approving the letter as revised.

Subcommittee on Populations—Dr. Mays

Dr. Mays asked for suggestions for a distribution list for the commentary and recommendations on race and ethnicity data, which was presented at the June meeting and has now been completed. The Subcommittee is now working with the Quality Workgroup in preparation for a two-day joint hearing on candidate recommendations in the report on Quality. The planning process involves struggling with issues like those discussed by today’s panelists. The Subcommittee plans to present its full report on race and ethnicity data in November. It is expecting a response to questions on the National Child Study and is working on what data are needed for medical history statistics.

Quality Workgroup—Mr. Hungate

The Workgroup conducted a two-day hearing in June to solicit comments on a set of candidate recommendations. Another hearing is scheduled for September 14.

The Workgroup is developing a mechanism for monitoring the status of candidate recommendations and moving them forward, and also planning next steps.

Future NCVHS Agendas

Agenda items suggested for November:

  • Populations Subcommittee report
  • Presentation on American Community Survey
  • Feedback from CMS on e-prescribing recommendations
  • Briefing on NIH roadmap
  • Research discussion

On the research item, Ms. Greenberg and Dr. Lumpkin asked subcommittees and workgroups to identify and prioritize both old recommendations that have not yet been acted and new topics on which research is needed, all in the context of the Committee’s past and current work agenda.

Letter to the Secretary on e-Prescribing

Dr. Cohn presented the revised version of the letter discussed the previous day. He explained and/or read aloud each of the revisions. Members proposed and discussed further modifications, but no major substantive issues arose. They then passed a motion approving the letter, as revised.

Report of the Subcommittee on Standards and Security—Dr. Cohn

Dr. Cohn thanked the Committee for its assistance in completing the letter on e-prescribing. The Subcommittee’s next hearings are on October 12-13 (subsequently cancelled), December 8-9, and January 13-14. A hearing on e-prescribing as it relates to privacy and confidentiality is scheduled for November 19, with a second hearing in early 2005. Other hearing dates are also being considered for 2005.

Dr. Lumpkin then adjourned the meeting.

To the best of my knowledge, the foregoing summary of minutes is accurate and complete.

  /s/

John R. Lumpkin, M.D.                                  12/09/2004

Chair                                                                  Date