Appendix C
Summary of Racial and Ethnic Data Concerns Related to Healthy People 2010
To strengthen data systems used to provide baseline and monitoring data for Healthy
People 2010, the DHHS held five regional meetings throughout the country in fall 1998 to
solicit public comment. HHS also engaged in discussions with data users and data system
managers both internally and externally to the Department, regarding ways to present the data,
set targets for the year 2010, and eliminate gaps in data collection for racial and ethnic minority
populations. During the regional meetings, participants recommended ways to improve racial
and ethnic data for Healthy People 2010. The statements, questions, and recommendations
provided below are culled directly from written and verbal comments delivered at the various
meetings.
Need to be responsive to changes that are occurring
- Changes to the International Classification of Diseases codes for mortality (ICD-10) and
morbidity. Compared to ICD-9, it will see an increase in cardiovascular disease and cancer
mortality, and decrease in chronic liver disease and cirrhosis, and pneumonia and influenza
mortality. Asked whether would re-calculate by cause.
- Changes in classification of race and ethnicity by Federal agencies (October 1997 revision of
OMB Directive No.15). In addition to changes in terminology, the recommended order of
questions on race and ethnicity, encouraging the two question format, creating new Native
Hawaiians and Pacific Islander category, are allowing persons to identify with more than one
race. How will Federal government and others use race and ethnicity data for those who
indicate more than one race? Asked what happened to non-Hispanic whites and blacks.
NCHS has been asked to tabulate natality data by race of the child. What about Middle
Easterners?
- Change in standard for age adjustment. Why not compare age-specific rates by race and
ethnicity? Suggest adding a note stating that age-adjusted rates and numbers are based on
year 2000 standard population.
Overarching data needs identified
- Funding for data and link to resources. Hard to garner funds for data collection at local level
with change of program administration down to local level. Need to ask decisionmakers
what they want to know, need to get buy-in from policy people.
- Need for national and State monitoring and surveillance. How does Federal government plan
to provide for State and local estimates? Need information on community basis.
- Need for more detailed studies of relative importance of underlying factors. How do we
examine all of these underlying factors together? Need discussion of the underlying factors.
Need to address underlying factors in Healthy People 2010 objectives; high school
education not sufficient (e.g., poverty).
- Need for better evaluation of programs funded by Federal government.
Other data issues
- How are targets set? In general, support single target, but there was at least one question of
using the better than the best approach (unachievable).
- Patient satisfaction data needed. There are not many tracking systems available to States and
perhaps national level for health services use and access. Concern about Government
Performance and Results Act (GPRA). GPRA measures are outcome measures while
process is easier to measure at the local level. Problematic to address Healthy People 2000
objectives in grant application.
- SES and disability status should be used to breakout objective data.
- Rural area data?
- How do we train States and others on these data issues? How do we plan to inform people of
these changes?
- Aggregate vs. detail
- Time to make changes (eight years), since can't get people to code. May not feel
comfortable using data collected by other agency.
- Important to find "victories" in the data and be able to say something good has happened.
- Healthy People 2000 contained a chapter on Surveillance and Data Systems. For Healthy
People 2010, only a few objectives addressed data within the Public Health Infrastructure
chapter. Considering the importance of data for setting baselines and monitoring, especially
for low income, racial/ethnic, and disabled populations, it is imperative that surveillance and
data be given higher visibility in Healthy People 2010. Health information and data are
core public health functions and should be emphasized in Healthy People 2010 (California
Conference of Local Health Officers).
Recommendations and comments submitted during the formal public comment period in
fall 1998
- For the national health objectives to be used at the State and local levels, data systems need
to be identified which allow States and local communities to track progress toward the
targets (CSTE). If State-level data are not available, then the objective should be noted as
"developmental." Preference should be given to objectives which can be analyzed at State
and local levels.
- Federal agencies should work together and with States, to assure comparability in data
collection methods, operational definitions, and standardized indicators. AAPCHO notes
that standardizing data sets to make them compatible, comparable, and useful for review and
planning for local, State or regional issues and concerns are critical.
- National health objectives on data system development should be included in every chapter.
- Extend to all 50 States the capacity for public health surveillance of injuries and other acute
health problems using data generated during emergency department visits and reported
through electronic networks.
- Identify and create, where necessary, national data sources for each objective related to
blindness and visual impairment.
- Use national Federal sources of cancer statistics (e.g., SEER, NCHS).
- State efforts are fragmented by competing needs for data from many of the funding agencies
(e.g., NIH, CDC), and State needs to track objectives (Maine Department of Health and
Human Services). Achieving consensus about the diseases, conditions, risk factors, services
and outcomes that should be under surveillance or subject to assessment throughout the
Nation would be helpful to State and local organizations. Basic data collection efforts such
as vital statistics should be recognized and stated as essential and integral to the public
health infrastructure. Federal agencies need to recognize and support the infrastructure to
collect and disseminate data, as well as the process of applying data for program planning,
implementation and evaluation by allowing financial support for data infrastructure and
application procedures in their block grants and categorical grants.
- Mental health and substance abuse communities, the social service system, and the criminal
justice system need to be included in integrating data systems.
- Managed care systems and insurance organizations should be explored as possible partners
in collecting and disseminating data.
- Healthy People 2000 objective 22.4 was never addressed, and still should be considered
for Healthy People 2010: "Develop and implement a national process to identify
significant gaps in the Nation's disease prevention and health promotion data, including data
for racial and ethnic minorities, people with low incomes, and people with disabilities of all
ages, and establish mechanisms to meet these needs." The Latino Coalition for Healthy
California noted that a plan to obtain data for Latinos for each objective needs to be
developed, including gender and birthplace.
- Standard definitions of children with special health needs, children with disabilities, family
support services/community-based care, resiliency, and other data elements/outcome
measures should be developed.
- Disability, along with race and ethnicity, should be incorporated into demographic sections
of national surveys and State-level data collection tools.
- Develop a set of health status indicators appropriate for Federal, State and local health
agencies, and establish use of the set in at least 40 States. National and State surveys using
the health status indicators should be required to include disability identifiers.
- An objective should be added to measure satisfaction with health information obtained
during their most recent search for information.
- An objective should be added to increase the proportion of Healthy People 2010 objectives
that can be tracked for select populations.
- An objective should be added to improve the availability and consistency of data on public
health expenditures by essential public health services.
- An objective should be added to increase the number of public health agencies that use
summary measures of population health and the public health infrastructure.
- NIH and other research vehicles must examine and restructure their funding priorities.
Researchers and research institutions that examine health status indicators that can be used
for Healthy People 2010 should be prioritized and targeted for additional funding to
conduct this type of research. Furthermore, funding streams for research vehicles collecting
baseline data on racial/ethnic health status should receive adequate funding proportional to
the racial/ethnic populations being examined.
- Alternative databases/data sets (e.g., State, regional, local data) should be used to augment
current data collection, especially when national data are limited due to sample size
(AAPCHO, LCHC).
- When not available, AAPCHO would like this further explained: (1) data were not
collected; (2) data have been collected but not analyzed; (3) data have been analyzed but
have not been reported due to sample size or other methodological issues.
- HHS should disseminate guidance on sentinel or other appropriate data that can be used in
the interim while national database/systems are being developed or upgraded to meet the
new OMB Directive No.15 Standards.
- AAPCHO recommends that HHS increase the data collection and surveillance of critical
health issues (e.g., tobacco, environmental health, diabetes) among the six U.S. associated
Pacific Island jurisdictions. HHS must work through the proper channels (i.e., Ministries of
Health in Republic of Palau, Marshall Islands and Federated States of Micronesia;
Departments of Health in Guam, CNMI and American Samoa) to ensure that appropriate
objectives are developed.
- It was noted that, of the 521 numbered objectives, only 100 (19.19 percent) have collected
baseline Hispanic data. Therefore, a specific goal for Hispanics should be included under
each objective for, but not limited to, the following sections: arthritis, osteoporosis and
chronic back conditions, cancer, health communication, public health infrastructure, heart
disease and stroke, diabetes, HIV, substance abuse, tobacco use, environmental health,
immunization, and infectious disease. In addition, it was recommended that baseline and
tracking data systems be identified, and data collected, analyzed and reported, for the
aforementioned sections.
- Data for females aware of heart disease as the leading cause of death should include
linguistically competent data collection in place of the telephone survey (Objective five,
Heart Disease and Stroke Chapter).
- Behavioral Risk Factor Surveillance System should be used as a data source to get
racial/ethnic group data for the breast examination and mammograms objective and Pap
tests objective (Objectives 13 and 10, respectively, Cancer Chapter).
- The cancer registries should add a sub-objective to capture data broken down by race and
ethnicity (Objective 15, Cancer Chapter).
- Include persons with disabilities as a select population as well as incorporate questions on
disability into all existing and future data collection efforts conducted by the Federal
government.
- Nineteen developmental objectives for vision were suggested, including "Identify and create,
where necessary, national data sources for each of the blindness and visual impairment-related objectives".
- A reexamination of the decision to drop the data and surveillance goals from Healthy
People 2000 and the re-inclusion of Chapter 22 in Healthy People 2000 on data and
surveillance issues was suggested, given the importance of reliable data to monitor the
Healthy People 2010 objectives. For example, with the addition of new objectives and
revision of others in Healthy People 2010, it would seem that carrying the intent of several
of the objectives from Chapter 22 would be crucial. The omission of 22.2 implies moving
away from taking the lead at the national level for identifying and creating data sources to
monitor the Healthy People 2010 objectives. HHS is passing the lead to the State and local
agencies to develop and implement the processes and mechanisms with the omission of
objective 22.4, which was part of Healthy People 2000. There does not appear to be a
Healthy People 2010 counterpart addressing procedures for collecting comparable data
and incorporating these procedures into the national health data system, or a comparable
Healthy People 2010 objective for several of the objectives from Chapter 22.
- "Increase quality and years of healthy life" are great goals, but there is not a commitment to
data collection to see if the goals are met. Availability of data, collection strategies,
utilization of other existing data, and payment of the costs of data collection are some of the
issues that need to be addressed to "measure and assure" that the goals in Healthy People
2010 are achieved.
- It was suggested that the final set of objectives use the updated Healthy People 2000
standard population for age adjustment.
- There should be a requirement that data be collected at the national, State and local levels, if
subgroups are to be represented. The private sector (HMOs, MCOs, etc.) should be
providing data.
- Certain "special populations"--prisons, military, reservations, and farm workers--are not
addressed, and should be included in every section.
- All American Indian and Alaska Native tribes should be tracked in terms of their health
status.
- The Background does not mention the BRFSS, but it is often mentioned as a data source for
specific objectives. This system was not designed to make national estimates, and its
appropriateness for making such estimates has not been established. Many of the objectives
cite the BRFSS as the major data source. It was recommended to require a review by an
independent group of the issues related to such use.
- It was noted that comparable questions do not necessarily mean comparable data. A
systematic review of the comparability of results from BRFSS and NHIS was recommended.
- Because the BRFSS only provides a State-level estimate of adult diagnosed diabetes (>80
years old) and State prevalence rates vary from national prevalence rates, direct substitution
may not be appropriate.
- While data may not be available, the objectives should still be stated in a measurable way.
Goals cannot be achieved if there is no way to measure the extent to which related objectives
have been accomplished. The Summit Health Coalition recommended that the U.S. Surgeon
General convene a national working conference before the year 2000 to develop solutions to
technical and implementation issues related to race and ethnicity data collection, to be
attended by representatives of Federal, State, and local government agencies and the private
sector, with substantial participation from minority communities.
- Because indicators should identify and prioritize the most important aspect of each focus
area, it was recommended to reduce the number of indicators to five to ten within each focus
area, and include a similar number of measurable, practical indicators per focus area, as well
as an established time frame for accomplishment. In addition, these indicators should be
directly tied to existing data measurement tools or data collection systems currently in place
or under development.
- The American Dietetic Association suggested that HHS use BRFSS as a data source and
consider leading health indicators that address healthy eating and obesity.
- Emphasis on epidemiology services is limited, and it was suggested to broaden this
objective to include behavioral research and other evaluation areas that are practice-based. A
similar recommendation pointed out that the team described is not a comprehensive
epidemiology team, but an interdisciplinary data/epidemiology/evaluation research team of
which epidemiology is a part.
- Newer evaluation models that include community-level indicators and policy change
indicators should be developed and disseminated.
- An asthma surveillance system is crucial to successfully addressing respiratory disease. One
example suggested establishing a surveillance system in at least 15 States to track asthma
mortality, morbidity, access to medical care and asthma management for children 1 to 4
years old, 5 to 14 years old and 15 to 19 years old, in addition to the adult population of
adults with asthma (Objectives zero and 13, Respiratory Disease Chapter).
- A statistical survey on representative drink servings, which has been proposed to members
of the Dietary Guidelines Advisory Committee, should be conducted by HHS and
SAMHSA. The survey would gather data from a sufficient number of restaurants, bars,
nightclubs and other establishments to determine a scientifically defensible definition of
"one drink". This approach would allow alcohol-related health policy to be used on accurate
and meaningful data (Substance Abuse Chapter).
- A significant issue is the State's capacity to collect and use data; Objective 19 helps
prioritize oral health surveillance. Also noted was the need for more systematic,
comprehensive and usable data on the oral health status of minorities (Objectives nine and
19, Oral Health Chapter).
- Because primary and secondary syphilis is 13 times more prevalent among Hispanics than
among whites, relevant data on Hispanic populations is needed (Objective one, STD
Chapter).
- Few data are available to indicate whether dropping out of school increases the use of
tobacco, or whether tobacco use is an indicator of who may or may not drop out of school.
Also, there are no data linking drop-out rates, levels of education and tobacco use in one set
of goals and objectives, ergo, smoking rates.
- It was recommended, as part of the State-wide cancer registry, that case information be
stratified by age, including a zero to18 year category, to better effectively track the rate of
childhood cancers (Objective 15, Cancer Chapter).
- Because non-physician primary care providers, such as nurse practitioners and certified
nurse midwives, place a higher priority on addressing health behaviors and preventive
services compared to physician PCPs, data should include the non-physician PCPs.
- The lack of potential data sources for objectives in the Mental Health and Mental Disorders
Chapter was indicated.
- A better presentation for early identification of infants and children at high risk for
developmental disabilities was recommended. Because the population included in the
Metropolitan Atlanta Developmental Disabilities Surveillance Program consists of school-aged children rather than infants and toddlers, it was recommended that State Birth Defects
Registries be strengthened to serve as a primary data source. Several States have developed
methodological approaches based on the selection of specific ICD-9 codes, extracted from
the Birth Defects Registry, and those are used to predict rates of developmental disabilities.
- Until a more accurate national surveillance system for violence against women has been
established, incidence and prevalence data should be listed as a range (Objective 38,
Injury/Violence Prevention Chapter).
- For objectives addressing deaths, hospitalization and emergency room visits, the goal is to
first collect data, consistently in each State, in order to project a national target. The ICD
codes used to measure each objective should be specific. Because interest lies in "intent" for
the injury, it would be more useful if E-codes could be used to measure the rates (Objective
one, two, nine, 10, 13, 14, 23, 28, 30, Injury/Violence Prevention Chapter).
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