Department of Health and Human Services
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Subcommittee on Populations Planning Meeting
October 26, 2004
Hubert H. Humphrey Building
The Subcommittee on Populations was convened on October 26, 2004 at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
- Vickie Mays, Ph.D., M.S.P.H., Chair
- Eugene Lengerich, V.M.D.
- A. Russell Localio, Esq., M.A., M.P.H., M.S.
- Donald M. Steinwachs, Ph.D. – Conf Call
Other committee member
- Justine M. Carr, M.D. – Conf Call, Workgroup on Quality
- Peggy Handrich
- Kevin C. Vigilante, M.D., M.P.H.
- C. Eugene Steuerle, Ph.D.
Staff and liaisons
- Nancy Breen, Ph.D., NIH
- Audrey Burwell, Office of Minority Health
- John Drabek, ASPE
- Brenda Evelyn, FDA
- Suzanne Haynes, Ph.D., Office on Women’s Health
- Debbie Jackson, NCHS
- Miryam Granthon, HHS
- Virginia Caine, PhD, NIH, Liaison
- Aldonna Robbins, NCHS Board of Scientific Counselors, Liaison
- Suzanne Heurtin-Roberts, Ph.D., NCI
- Gracie White, NCHS
- Jacqueline Lucas, PhD- Conf Call
- Cille Kennedy, HHS
- Julia Holmes, NCHS, Workgroup on Quality
- Sarah Knox, Ph.D., NICHD, The National Children’s Study
- Anne Brown Rodgers, writer-editor
Note: The transcript of this meeting is posted on the NCVHS Web site, http://ncvhs.hhs.gov/lastmntr.htm
- The Subcommittee discussed collaborating with the Privacy Subcommittee on issues of collecting and making available health data on racial and ethnic minority populations while preserving confidentiality.
- The Subcommittee decided to set up a joint hearing with the Quality Workgroup on candidate recommendations about race and ethnicity to make the business case for collecting these data and to learn how they are collected, barriers to collection and discussed the role of functional status in quality measurements.
- The Subcommittee discussed future directions for the HHS Mental Health Statistics Portfolio, the importance of consistent statistics on mental health, and making the statistical link between mental and physical health. The group talked about who should be involved from different agencies, and the distinction between surveillance and prevalence. The Subcommittee decided to set up a workgroup of interested persons to examine the issues.
- The Subcommittee heard a presentation on the National Children’s Study and discussed issues it should address as the study is being designed.
- The Subcommittee discussed with the Board of Scientific Counselors (BSC) liaison the value to the BSC of the NCVHS report, “Vision of Health Statistics for the 21st Century.”
- The Subcommittee developed an agenda for the Nov. 4 breakout meeting to cover: an information session with the FDA; discussion with the Standards Subcommittee to clarify the issues and see where the Subcommittee might be able to make a difference in data collection on populations in drug trials; discussion of joint hearings with the Quality Workgroup; request to HHS for data on changing race-ethnicity designations; and discussion with the Privacy Subcommittee about the National Children’s Study and how the two groups should be involved.
Please see detailed summary below for the brief summaries of these agenda items.
CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA
Dr. Mays called the meeting to order and initiated discussion on the overall agenda for the meeting: the workgroup process, the direction for the group, priorities, ongoing projects, and staff assignments.
She began by asking the group to address the collection of health statistics the group would like to see the federal government collect on mental health and how the committee could take the lead in pulling health and mental health statistics together. Bringing the two together, she said, would reveal the interaction between well being and mental disorders and physical health.
Referring to the Sept. 14, 2004 hearing on information needs for quality measurement, Dr. Mays suggested the committee decide which recommendations from the Workgroup on Quality the Populations Subcommittee needs to have hearings on and which it should suggest specific changes on that would make a difference in quality of health services delivery, health care, and health status of vulnerable populations.
On protecting privacy and confidentiality, Dr. Mays initiated a discussion on the issues involved in work with racial and ethnic minority data, particularly with small populations.
The issue, according to Dr. Lengerich, is how to make data on small groups available to increase knowledge about the health of a given population without violating confidentiality.
The longitudinal National Children’s Study will cover 100,000 children, beginning in utero and continuing through age 21. Dr. Mays suggested the Subcommittee address at the onset the kinds of information important for racial and ethnic minorities that the study should collect.
Brenda Evelyn of the Food and Drug Administration said the agency does not track data on racial and ethnic minorities. It simply requires that drug trials include women and a mix of racial groups. Many of the clinical trials are conducted in Europe, where U.S. reporting protocols are not followed, so reporting on race and ethnicity and the categories used is inconsistent.
Dr. Mays suggested requesting an information session with the FDA and holding a discussion with the Standards Subcommittee to clarify the issues and see where the Populations Subcommittee might be able to make a difference in data collection. She put this issue on the list for a November 4 breakout meeting.
Collaboration with the Privacy Committee
A piece on privacy, written by Russell Localio, was distributed to participants for discussion. Mr. Localio outlined the issues of collecting data on race and ethnicity, not only across the country, but by region, by sub-race, and by sub-ethnicity and the complications of privacy policies, rules, and statutes. “The question,” he said, is “why are we going to collect the information if people can’t use it?”
There are some policies to make data available, through a data center in Hyattsville, for example, where people can use specific analytic tools and leave with some specified analyses. However, Mr. Localio said, he can go to a hospital with Institutional Review Board (IRB) approval and get a limited dataset with enormous detail on people, with their diagnoses, procedures, dates of birth, zip codes, and other information covered by the HIPAA, but the detail is not available from a survey conducted by the National Center for Health Statistics (NCHS).
These inconsistencies, Mr. Localio suggested, should be addressed with the Privacy Committee and a representative of NCHS.
GEO coding (making data identifiable to place) creates a tension, Dr. Lengerich said, between the need for specificity to link health and health outcomes to place, which studies have shown is significant, and the need to ensure confidentiality. The issue is identifying the barriers to use of the data for population groups and determining how to overcome those barriers.
Dr. Mays suggested that place is so important to health and health outcomes that it should be a guiding force in the Subcommittee’s efforts and in discussions with the Privacy Subcommittee to address changes to policies, procedures, or regulations that would facilitate greater knowledge about place.
Dr. Mays turned the discussion to another aspect of data use—accessibility, and how improvements in technology can increase access to data. Some query systems will generate a table in response to a query about a given issue by race or ethnic group and age, for example. She asked if these systems should be part of study proposals or be created for existing datasets.
Mr. Localio suggested starting a discussion with NCHS about the spectrum of available technical solutions to increase data accessibility. There may be large amounts of data collected at great expense that people can’t access. While there may be information on health trends for a group nationwide, there may be significant regional or local differences that cannot be ascertained
The problem may be technological, Dr. Lengerich said, but it might also be an issue of what data are collected and how they are made available. Making information about place and the impact of place on health available to groups interested in improving health for their groups is needed. The question remains whether the data can be collected and what mechanism would make the data available.
The technology Mr. Localio said he was considering would mask the data to make individuals unidentifiable. He discussed software that might be available and useable on a laptop. Regarding the NCHS Child Study, he said the issue is the provisions in the study design for collecting information on race, ethnicity, and place, and the plans for making the information available.
The discussion turned to identifying groups that should be included in the discussion about data collection and accessibility, perhaps for the Nov. 4 meeting. Dr. Mays suggested the Census Committee and pharmacy people??
At Dr. Mays’ invitation, Audrey Burwell, lead staff to the Subcommittee, of the Office of Minority Health, talked about the Confidential Information Protection and Statistical Efficiency Act of 2002 (CIPSEA) as it relates to data sharing, data safeguards, and access to data. Committee members requested a briefing on the statute. Dr. Mays suggested the briefing be geared toward racial and ethnic minority populations, showing how the law helps or hinders sharing data on specific groups in specific locations. Mr. Localio concurred, suggesting that the presentation address whose approval is needed to gain access to data and other hurdles. He also recommended polling people who want to use the data to find out what they need and what they want to do with the data.
Dr. Mays recommended Paul Ong, Ph.D., a recent member of the Census Committee, who works with Asian, Native Hawaiian, and Pacific Islander populations; and Matt Snipp, another recent member of the Census Committee, who works with American Indians, provide testimony on their experience in accessing data and what their wish lists might be. She also recommended inviting some people who could discuss NCHS datasets.
Dr. Suzanne Haynes asked whether the issue was sample size, but Mr. Localio said the issue is the difference in rules and guidelines that govern data collection and later data accessibility if a survey is conducted by NCHS or using federal funding under an NIH grant.
In some cases, Mr. Localio said, it is impossible to get the primary sampling unit (PSU) to do the analysis. The other problem, Dr. Lengerich said, is that the minority groups themselves cannot get access to the data to analyze them and use them to improve health in their community. The point, according to Mr. Localio, is that whatever questions people come up with, they should have the data and the tools and the access to answer them.
Dr. Mays outlined the one-day meeting to address the issue; with testimony in the morning about the difficulties people have accessing data, using a case study approach. In the afternoon, an NCHS representative as well as people from Census and other committees.
Candidate Recommendations of Quality Workgroup that Overlap with Populations
Dr. Holmes and Dr. Carr summarized recent Quality Workgroup meetings, stating that the Workgroup agreed to submit candidate recommendation 3 and that it would continue to work on promoting the viability of functional status indicators. Three hearings focused on the first eight recommendations, but several people testified to the importance of all 21 in the evolving measurement system for the improvement of health care. The last hearing included discussion on candidate 11, modifying existing mechanisms for reporting race and ethnicity of subscribers and dependents on the Health Information Portability and Accountability Act of 1996 (HIPAA) enrollment transaction, and candidate 12, on how best to capture race and ethnicity on a standard provider transaction. Further hearings on implementation of these data were called for, to be conducted by the full Committee.
Dr. Mays addressed candidate recommendation 3 and the overlap of the Populations Subcommittee with the Quality Workgroup on the importance of capturing data on functional status in quality assessment of patient outcomes.
Dr. Carr and Dr. Mays discussed joint hearings with the Quality Workgroup on the recommendations and on identifying gaps in the research agenda or focus for the year that would help with the candidate recommendations.
In addition to comments on candidate recommendations 11 and 12, Dr. Mays said a hearing is needed to address the difficulties in collecting the data, such as the format for requesting information on race and ethnicity and who asks the questions, and whether improvements could be recommended. The hearing, she said, should cover “who, when, and how do we define.” And before the subcommittee makes recommendations for change, it should hear from the groups and industries involved.
Dr. Carr pointed out that the federal government is bound by 1997 OMB requirements to gather and report data on race and ethnicity in a particular way.
Dr. Holmes suggested inviting NCHS because of its large health care surveys used to measure quality and gather data on race and ethnicity. She brought up the Bridging Project, an effort to bridge historic data with data collected after the 1997 OMB requirements were put in place. For example, since 1997, a person can report being of multiple races; before they had to choose one. She also recommended including Agency for Healthcare Research and Quality (AHRQ) members who worked on theNational Healthcare Disparities Report, because of the difficulties they experienced in reporting on race and ethnicity across multiple data collection efforts. Dr. Mays recommended putting on the research agenda the context of the changing of race and ethnicity within the health care encounter.
The group discussed including representatives from private industry, the pharmaceutical industry, states, and associations.
Dr. Mays suggested exploring where information is collected and how widely it is shared.
Dr. Carr pointed out that people may change their response to a question depending on who is asking, where (at the physician’s office, at a hospital), why, and how it’s being asked.
Dr. Holmes reported that while hospitals may have race and ethnicity data, they are not required to report the information in the hospital discharge data system. She recommended making a strong case for a change, requiring all health care providers—institutions, clinics, or physicians—to develop a methodology to capture race and ethnicity. Part of the hearing, she said, should be to make the case for collecting this data to be able to talk about quality of care and changing disparities.
Dr. Lengerich and Dr. Mays iterated that the issue is not only in data collection, but in sharing the data throughout the system so that it can be used to improve quality of care.
Mr. Localio raised the problem of accuracy of data and provisions for auditing records, because of the many opportunities for the quality of the data to be bad.
Dr. Steinwachs identified three levels of concern—race-ethnicity as part of patient-care decisions; quality improvement within the organization; and the effect of the quality of the data on health care and on the larger statistical assessment of health care quality and disparities.
The issues, Dr. Holmes outlined, are creating a business case for the importance of collecting data on race and ethnicity and determining how the data should best be collected and what should be reported. For example, data gathered on enrollment in a health plan should be linked to subsequent medical records.
Dr. Carr suggested developing ways to do accuracy checks, by identifying how often there is a change in what is reported in different settings.
Dr. Mays said that NIH has just published a program announcement asking for applications to examine these issues from a research perspective. She then wrapped up the issue recapping the need for a hearing on the candidate recommendations on race and ethnicity; that a business case must be made for collecting data on race and ethnicity, and that the group needs to learn more about who collects the data and the burdens associated with data collection. The context for these discussions, she said, is quality improvement, health care disparities, and patient safety. And the data are administrative, research, and evaluative, covering health plans, surveys, state-level administrative data, and data collected by professional organizations such as the AMA and AHA.
Dr. Steinwachs suggested looking at the Veterans Administration system and how it handles capture and application of race and ethnicity information for quality improvement.
Dr. Carr suggested adding to the research agenda a mechanism for checks and balances.
One way to look at differences in reporting on race and ethnicity, Dr. Holmes pointed out, is through the bridging project. Another, Dr. Steinwachs suggested, would be to look at follow-backs to insurers and payers who compare information from interviews with other health care data sources. Dr. Mays said she would make formal requests of NCHS and AHRQ for any information they may already have.
Next steps will be to work out details for a joint hearing on the issues by the Quality Workgroup and Populations Subcommittee.
Future Directions for Mental Health Statistics Portfolio
Dr. Mays introduced the issue of the consistent set of statistics that should be collected on mental health and what the subcommittee can do to try to make the statistical relationship between mental health and physical health.
A transcript of the August 16th conference call on the issue was distributed that addressed what questions to develop to guide further thinking, what data are being collected, who is collecting the data and how often and the link between that and making people healthier. The purpose of the call was to share information across agencies about what is being done and about how to tie physical health to mental health.
Dr. Mays initiated the discussion with a question on the definition of mental health—whether it includes substance abuse, for example.
Dr. Kennedy presented some handouts of PowerPoint slides on cognitive and psychological functioning from a UN conference that associated disability with mental health. Mental health is often defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), but there was a proposal to define positive mental health as positive affect and personality traits, self esteem, a sense of self mastery, coherence, self efficacy, and resilience. Conference participants uncovered some 15 consensus mental health items, from global indicators of mental health to operational definitions.
The consensus list includes: sleep problems, role limitations, social functioning, social isolation, chronic stress, life events, self mastery, optimism, cognitive functioning or deficit, dementia or Alzheimer’s, suicide attempt, alcohol and drug dependency, anxiety and depression, positive mental health or psychological well being, or psychological distress.
Information from the National Institute on Disability and Rehabilitation Research shows that different surveys assess different things, flipping between disability and mental disorder. Terms are often used to mean different things. For example, cognitive impairment was synonymous with mental retardation but is now considered a synonym for Alzheimer’s or dementias. It can also be a functional deficit of the cognitive aspects of mental functioning.
A third handout provided a set of measures to identify the population in national surveys who have a mental disorder. What measured best is Kessler’s K-6, part of the National Health Interview Survey.
Dr. Kennedy said NIMH purposely has no definition of severe mental disorders. In 1997, the national Advisory Mental Health Council came up with a definition of severe mental illness, having to do with diagnosis, duration, and disability. SAMHSA has a definition of serious mental illness that was legislated—so there are two different meanings for two different federal agencies. The reason not to define, she said, is to not limit the potential for researchers to investigate different areas.
Dr. Mays asked whether Healthy People 2010 had any target goals for mental health. Ms. Granthon said there is an objective for suicide as well as developmental objectives for children and adolescents. A list of the objectives included the goal of improving mental health and ensuring access to appropriate quality mental health services for different groups in different situations, from homeless adults to incarcerated juveniles. Dr. Mays suggested the need for some surveillance of that objective. A draft document of objectives will be issued for public comment, according to Ms. Granthon.
Dr. Steinwachs suggested working to clarify the most important foci for collecting data, separating the issues around mental illness, mental health, and disability.
Dr. Lengerich brought up the question of depression and self-reported depression and whether that should be a candidate for surveillance. Lay definitions for terms such as depression, stress, and anxiety differ from clinical definitions, making severity and disability important factors, Dr. Mays pointed out, asking if anyone is the keeper of mental health information on a federal level.
According to Dr. Haynes, SAMHSA produces the most mental health statistics, through its household survey. NIH also does large surveys every 10 years, Dr. Mays said. She questioned whether the Assistant Secretary for Planning and Education (ASPE) would be interested in commissioning someone to pull together all the available statistics.
Mr. Localio raised the issue of mental health information for populations not usually covered by surveys, such as prisoners.
Healthy People objective, 18a, increases the proportion of juvenile justice facilities that screen new admissions for mental health problems, Dr. Haynes said, and SAMHSA monitors an inventory of mental health services in juvenile justice facilities.
Dr. Mays turned the discussion to addressing the people who should participate in a workgroup to talk about definition, distinctions, and scope of information collected on mental health. Subcommittee members recommended NIDA and NIAA for their surveys of substance abuse, alcoholism, and depression, in addition to SAMHSA, NIMH, the Behavior Risk Factor Surveillance System (BRFSS), the National Association of State Mental Health Program Directors, and the Surgeon General’s Office, which has two projects, one on women’s mental health and the other on mental health services for jails and prisons. The Centers for Medicare and Medicaid Services has administrative or claims data that could be useful, Dr. Kennedy suggested.
In the states, according to Dr. Haynes, all the data systems are different and there is no standard data collection form.
Dr. Lengerich suggested having participants identify the top two to three items they would like to have in improved data collection on mental health. Dr. Steinwachs volunteered to lead the effort.
The National Children Study
Sarah Knox, Ph.D., of NICHD, gave a short slide presentation on the National Children’s Study, which originated in the President’s Task Force on Health Risks and Safety Risks to Children in 2002. The rationale is that children’s health issues are different from adults. For example, children are especially vulnerable to environmental exposures, not only lead and prenatal alcohol, but the 80,000 chemicals commonly in use.
The basic concept of the study is that it will be hypothesis-driven, national, and longitudinal. It will include children, their families and their environment—broadly defined as chemical, physical, behavioral, psychosocial, and cultural. The study will also look at a common range of environmental exposures in less common outcomes, such as autism. Exposure period begins during pregnancy, but the group is trying to get a preconception cohort of about 25 percent to assess environmental influences on fertility and early neural development.
The study will involve state-of-the-art technology and a consortium of agencies, with an interagency coordinating committee with representatives of the CDC, EPA, NIEHS, and NICHD. It should also involve public–private partnerships. The goal is to have the data available quickly after each wave of data collection. First results will be available in 2010.
Study populations include high-risk groups like agricultural, industrial, and economically disadvantaged populations, as well as non-pregnant women of child-bearing age to assess effects on fertility and pregnancy.
The sampling strategy concepts are that it should be a national probability sample with a center-base structure, using academic centers with the expertise to handle measures and observation. It should also have multiple, dense clusters to allow an assessment of neighborhoods from a physical perspective—cohesiveness, chemical exposures, building dilapidation. Initially, statistically primary sampling units are selected for the whole study. The first RFP will be for three to six vanguard sites. The study will begin with selection of geographic regions and end with selection of individual households. The sample size will be 100,000.
The cohort of 100,000 is required to look at the interactions of biological environment, psychosocial environment, physical environment, and chemical environment, influencing such outcomes as asthma, neurology and development, growth and obesity, injury and birth.
Another advantage of the sample size is that it will permit a look at big-issue, low-frequency outcomes, such as autism, diabetes, and birth defects, that would not be possible with smaller studies.
The study is hypothesis driven to give it reasonable scientific rationale and to justify cost by probable outcome. Examples of core psychosocial hypotheses are influence on gene expression, stress, nurturance, and parenting, media use, and healthy development. The psychosocial component also helps tease out physical and chemical factors from socioeconomic status. And, Dr. Knox said, the sample size will allow secondary analyses of factors that don’t qualify as core hypotheses, such as racism in schools or day care.
The U.S. study is looking to create a consortium of cohort studies with ongoing studies in Denmark and Scandinavia.
The study must be longitudinal because the effects of many exposures—chemical or psychosocial—don’t show up for many years. The study will involve environmental samples—air, water, dust—biomarkers—blood, breast milk, hair—as well as structured interviews, histories, serology and medical data, housing and living characteristics, family and social experiences, and neighborhood and community characteristics.
Specific hypotheses and the study design will be finalized in 2004; the vanguard sites should be funded by the end of fiscal year 2005, and the full study is expected to begin with the initial centers in 2006.
Mr. Localio asked how the study will guard against identifiability. Dr. Knox said the issue is being discussed and that an ethics advisory board may be appointed to handle confidentiality issues, particularly with genetic material and small population groups. The goal is to make the dataset available to the public, which will require complex de-identification.
Dr. Mays volunteered to share recommendations of the Subcommittee on Privacy and Confidentiality on maintaining confidentiality with small populations. Dr. Knox asked if the study group could also collaborate on connecting with existing databases. Dr. Mays suggested discussing that at the Nov. 4 breakout meeting.
Dr. Lengerich raised the issue of identifiability when place and its impact on health is being analyzed. Dr. Knox asked for input on these issues. Dr. Mays said the Subcommittee, working with the Privacy and Confidentiality Subcommittee, is looking for a process, regulations, or some method to de-identify data.
Dr. Lengerich and Dr. Mays emphasized the importance of community willingness and participation to ensure high compliance and retention. Dr. Knox said that groups who compete to conduct the study will have to show a history of funded, productive, longitudinal research. In addition, the study will include strong incentives to keep communities involved.
Dr. Mays raised the issue of ethics with respect to genetic information and suggested initial studies to determine what the issues will be and what method should be used to handle them. Often, she said, ethnic and racial minorities are fearful of participating because of confidentiality issues. A different certificate of confidentiality might be needed for these groups to bar individuals who learn information about parenthood, for example, from instigating lawsuits
Dr. Knox said the group had discussed the ethical issue of revealing genetic information to an individual who may be at risk for an illness if that information raises questions of parenthood. However, she said, the feeling was that most illnesses are complex—the result of multiple genes or gene–environment interaction. The group consensus was not to give information back to individuals that could be distressing and which the individual can do nothing about.
The ethics committee would make recommendations on other issues, such as making information known to a community about pollutants in drinking water.
“You don’t want to go scaring people about something that’s an artifact,” Dr. Knox said, “so you have to first establish that the data are reliable, but then you need to decide what to do about it.”
Mr. Localio described the study’s three-stage sampling (involving weighted, oversampling, and repeated measures in addition to one-time exposures) and asked what software could handle the complexity.
Dr. Knox said the group has a separate data module to deal with these types of issues and to make the data accessible for people to analyze. The rights of the public to the data and the rights of the investigators, in terms of lag time before the data are released, is another ongoing debate.
NIH has a three-month release after first publication, according to Dr. Haynes. The demographic community releases datasets immediately, Dr. Caine said.
Dr. Mays asked whether community groups would have access to the data at the academic centers conducting the study in their area. She gave the example of UCLA funding a program for researchers to help Asian and Pacific Islander community groups get access to census data about their communities. Knox said that might be a further incentive for communities to participate.
Dr. Mays and Dr. Knox agreed that the Subcommittee on Populations would continue to talk with the National Children’s Study group about the issues raised and would continue to have presentations and updates on the study, to share the work of both groups.
Potential Role for NCHS BSC on the Vision of Health Statistics for the 21st Century
Dr. Mays introduced the discussion explaining that NCHS and the Subcommittee on Populations jointly produced a report, “Vision of Health Statistics for the 21stCentury.” Now that NCHS has a Board of Scientific Counselors, Dr. Mays proposed putting the report on the board’s agenda, while it begins to form committees, because the report gives an overview of the population health perspective. The Board of Scientific Counselors is about to start looking at specific datasets, she said, and needs to understand the importance of population health statistics to a particular problem.
BSC liaison Dr. Robbins said the board is struggling with the direction to go in. Part of the board wants an overview of the datasets, going survey by survey. The other part is interested in getting at issues and modeling. She asked the group for suggestions.
The report offers guidance, principles, and values, said Dr. Lengerich, with specific recommendations. It also tries to integrate with the National Health Information Infrastructure (NHII). Dr. Mays said it offers guiding principles for thinking about and coordinating datasets and would give the board a means of connecting with NHII.
Dr. Robbins said she could see using the report as a framework for evaluating the datasets, as well as for people concerned with population health issues. She said she would talk with the board about a presentation on the report at its January meeting.
Dr. Robbins briefly discussed the reorganization of the CDC into coordinating centers with an information group and a marketing group to improve outreach to the public and a 2005 program evaluation of all the activities of the NCHS.
Dr. Haynes suggested the evaluation would be strengthened if it were tied to the vision. Dr. Lengerich pointed to the 10 guiding principles, including flexibility of data systems, timeliness of data systems, and evaluation.
The big issue, according to Dr. Robbins, is identifying the questions that need to be addressed and ascertaining if there are surveys designed to address those questions and produce those data.
Dr. Mays recommended introducing the report into the board’s structure of operations so that population health issues are not neglected.
Populations Report Status—Agenda for Nov. 4 Breakout Session
Summing up from the meeting, Ms. Burwell said the agenda items will be:
- Discussion of possible joint hearings with the Quality Workgroup
- Request whether some HHS groups already have data on people changing their race and ethnicity.
- Discussion with the Privacy Subcommittee about the National Children’s Study and how together the two groups might help flesh out the issues, identify methods to de-identify the data, and look at inventories of linkable data.
Dr. Mays then led a discussion on next steps for a Populations Report. She recommended a writer incorporate all the edits and create a working document; look at the recommendations, which became strategies, eliminate duplications, and reorganize them; and ideas for overall organization of the report.
Dr. Localio recommended a Privacy Subcommittee review and emphasis on the theme of having consistent policies so data can be made as widely available as possible. The group agreed not to present the report to the full committee, but to present the issues and outline the report that will be ready for the following meeting.
Dr. Mays adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing Summary of minutes is accurate and complete.
Vickie Mays /s/ 12/17/04