Promising Programs in Racial and Ethnic Disparities in Health and Health Care Addressing... researched and compiled by Sarah McCloskey, Erin Kennedy, and Michele Sloan December 2004 and updated November 2007
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Massachusetts | Virginia | Rhode Island | National Programs | Data Collection Limitations
Background
Data collection is crucial in order to understand and eliminate healthcare
disparities. National and state efforts should include the standardization of datacollection
methods to facilitate sharing of information. Accurate and up-to-date
data collection allows researchers and health plans to “monitor performance,
ensure accountability to enrolled members and payers, improve patient choice,
allow for evaluation of intervention programs, and help identify discriminatory
practices.”* The Institute of Medicine recommends the collection of data on
“healthcare access and utilization by patients’ race, ethnicity, socioeconomic
status, and primary language.” *
*Unequal Treatment. Institute of Medicine. 2003.
State Programs
States utilize a variety of methods to collect and interpret health-disparities
data. A particularly useful source of information is the CDC’s Behavioral Risk
Factor Surveillance System (BRFSS). States often coordinate with healthinsurance
companies and state Departments of Health Statistics to collect
demographic and vital-statistics data.
MassachusettsMassachusetts Health Status Indicators by Race and Hispanic Ethnicity – This compilation of state data provides information on the health status of residents by race and ethnicity. The purpose of the report is to provide data from a variety of sources in one place for convenient use by policy makers, public-health officials, advocates, and program planners. Each chapter of the report contains information on the agency or program responsible for collecting and reporting the health data and how the data were collected. Health status areas included are demographic data, maternal and infant health, mortality patterns, health status and risk behaviors, indicators of healthcare access, Promising Programs to Eliminate Racial and Ethnic Health Disparities 29 hospital discharge data, and AIDS-incidence data. The link below also contains information in a PowerPoint format regarding Mass. state data-collection and monitoring programs. virtualgateway01.ehs.state.ma.us/MassCHIP/instant_topics.jsp?rep=284&geo=15
VirginiaThe Health of Minorities in Virginia, 2003 – In the early 1990s, the State Minority Health Advisory Committee recommended that Virginia collect and evaluate health statistics data by racial and ethnic group. The fifth edition of this report covers calendar year 2003. It provides vital statistics information by race and ethnicity for each health district (city/county) in the state. Some data are collected from population estimates (birth, fetal deaths, pregnancy, and death). All vital events (births, deaths, induced terminations of pregnancy) are reported to the Center for Health Statistics at the Va. Department of Health. www.vdh.state.va.us/HealthStats/stats.asp
Rhode IslandPolicy for Maintaining, Collecting, and Presenting Data on Race & Ethnicity -
Created by the R.I. Department of Health, Office of Minority Health, and
Office of Health Statistics in July 2000, this report emphasizes the importance
of collecting data by race and ethnicity for the purposes of research, publichealth
monitoring, program administration, and civil rights. These data are
intended to help monitor trends of existing/emerging diseases, track health
status among population groups, assess progress in improving health, and
assure non-discriminatory healthcare access and treatment. www.health.ri.gov/chic/statistics/data%20policy%20guide.pdf 
National Programs50 State Comparisons on Minority Health – The Kaiser Family Foundation (KFF) provides racial and ethnic data in a comprehensive, user-friendly website. The site includes information on demographics, health statistics (birth rates, death rates, immunization rates, smoking, obesity, and mental health), health insurance coverage, women’s health, and HIV/AIDS. Data can be displayed as bar graphs, tables, and color-coded maps, or presented in individual state profiles. Data sources include the Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS), and the U.S. Department of Health and Human Services (DHHS). www.statehealthfacts.org/cgi-bin/healthfacts.cgi
In July 2004, America’s Health Insurance Plans (AHIP) collaborated with the Robert Wood Johnson Foundation (RWJF) to assess the collection and use of racial and ethnic data by health insurance plans. Their findings indicated that plans that collect such data do so to identify enrollees with risk factors for certain conditions, develop disease-management programs, and facilitate communication among the plan, providers, and enrollees with translation services and multi-lingual websites. Plans that do not collect data do not because of barriers such as enrollees’ reactions to collecting these data, enrollee misperception of the intended use of this information, and lack of standardization in data-collection techniques. www.rwjf.org/research/researchdetail.jsp?id=1373&ia=133
Toolkit for Collecting Race, Ethnicity, and Primary Language Information from Patients – The HRET developed this toolkit as the first step solving health disparities, through collecting data to pinpoint the problems. This toolkit enables health care organizations to collect important data and use it to assess the quality of care given to minorities, how connected providers are with specific communities, and a method to assess the validity of the data collected. In addition, the toolkit is broken down to efficiently accommodate the roles of different health care employees in hospitals. The HRET believes that this toolkit can aid hospitals and other organizations in collecting data that can be used to get to the core in solving disparities. On their website, they include success stories of organizations effectively using data to improve quality of care, such as Kaiser Permanente www.hretdisparities.org
Data Collection LimitationsNo federal law exists prohibiting the collection of data on race and ethnicity. Only four states have laws or regulations that prohibit the collection of these data: California, Maryland, New Hampshire, and New Jersey.*
*Collection of Racial and Ethnic Data by Health Plans to Address Disparities: Final Summary Report. July 2004.
For more information, contact Eric Jacobson (302-831-1711).
photo on this page courtesy of the Administration on Aging
