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Persons using assistive technology might not be able to fully access information in this file. For assistance, please send e-mail to: mmwrq@cdc.gov. Type 508 Accommodation and the title of the report in the subject line of e-mail. Reporting Race and Ethnicity Data -- National Electronic Telecommunications System for Surveillance, 1994-1997Reporting accurate and complete race and ethnicity data in public health surveillance systems provides critical information to target and evaluate public health interventions, particularly for minority populations. A national health objective for 2000 is to improve data collection on race and ethnicity in public health surveillance and data systems (1). To determine progress toward meeting this goal in CDC's National Electronic Telecommunications System for Surveillance (NETSS), the percentage of case reports of selected nationally notifiable diseases reported through NETSS with information regarding a patient's race and ethnicity was calculated for 1994-1997. The findings of this study indicate these data were received for approximately half of the cases, and the completeness of reporting of race and ethnicity data to NETSS had not improved. Finalized data on 31 nationally notifiable diseases reported by the 50 states, New York City, and the District of Columbia to NETSS from 1994 through 1997 were examined for completeness of race and ethnicity information. Data were excluded for nationally notifiable diseases not reported weekly through NETSS (e.g., tuberculosis, acquired immunodeficiency syndrome, and other sexually transmitted diseases) or for conditions not nationally notifiable over all 4 years (e.g., amebiasis, invasive group A streptococcal disease, and cryptosporidiosis). Summary files (i.e., individual cases reported as aggregated data), which account for approximately 7% of all cases reported annually, also were excluded because they do not contain race and ethnicity information. Among the individual case reports, levels of completeness for reporting race, ethnicity, and race and ethnicity * combined were calculated for the nation, by reporting area, and by disease. Because reporting area-specific and disease-specific reporting trends of race and ethnicity separately were similar to trends for race and ethnicity combined, only the combined results are presented. To assess trends for the combined variable, a rank Spearman test for trend by reporting area and by disease from 1994 through 1997 was calculated using Statistical Analysis Software (SAS). State health department officials were contacted to determine data reporting practices for the three states with completeness levels less than 10% during 1994-1997. From 1994 through 1997, CDC received information about both the patient's race and ethnicity for approximately half of the cases reported through NETSS (Table_1); information about race was available more often than ethnicity. In comparison, reporting of sex and age data were 95%-99% during the same period (Table_1). Among all individual case reports for the 31 diseases reported through NETSS, five (Escherichia coli O157:H7, pertussis, plague, Rocky Mountain spotted fever, and tetanus) had significant increases in reporting of race and ethnicity data (Table_2). Reporting completeness of these data in case reports for two diseases (other botulism and rubella) decreased. From 1994 through 1997, the proportion of case reports with race and ethnicity data did not change significantly in 34 (65%) reporting areas and declined significantly in nine areas (17%) (Alabama, Idaho, Michigan, Mississippi, New Jersey, New York, Ohio, Texas, and New York City) (Table_3). Three reporting areas (Alabama, Maine, and Vermont) reported both variables for less than 10% of patients annually. Vermont collects but does not report race and ethnicity data to CDC. The remaining two reporting areas collected data using demographic categories other than the standard two-variable categories. Reported by: State and territorial NETSS surveillance coordinators. Council of State and Territorial Epidemiologists, Atlanta, Georgia. Div of Public Health Surveillance and Informatics, Epidemiology Program Office, CDC. Editorial NoteEditorial Note: Case reports, including demographic information, for nationally notifiable diseases routinely are prepared by local health-care providers and clinical laboratorians and sent to reporting area health departments, often through local health departments. Data from these reports are voluntarily transmitted electronically to CDC through NETSS by reporting area health departments (3). Results from this study are similar to findings in evaluations in 1987 and 1990 of completeness for race/ethnicity data reported through NETSS (4,5). ** Despite increased emphasis on collecting race and ethnicity data in the national health objectives for 2000, no improvement was found for 1994-1997, and reporting completeness for these data continues to be lower than reporting levels for age and sex. Race and ethnicity data may not be reported by health-care providers or clinical laboratorians for at least four reasons. First, providers may not know what the federal standards are for data collection about the race and ethnicity of their patients for surveillance purposes. Second, if a health-care provider forgets or is reluctant to ask a patient's racial/ethnic background, this information may not be recorded. Third, patients may choose not to provide information about their race and ethnicity. Finally, clinical laboratory staff may not report race and ethnicity data because they do not have access to that information (6). Resource constraints at the local and reporting area level may limit the ability of surveillance staff to follow up on reports with missing race and ethnicity data. The use of other race and ethnicity standards not supported in the electronic transmission of NETSS data also contributes to low national reporting levels. In 1991, modifications to the electronic NETSS record divided race and ethnicity data into two separate categories rather than a combined race/ethnicity category. However, two states continued to collect most of their data using a combined race/ethnicity category. Other reporting areas also may have translated combined race/ethnicity data into the two separate categories currently supported in NETSS, resulting in a systematic loss of either the racial backgrounds of Hispanics or the ethnic backgrounds of American Indians or Alaskan Natives and Asians or Pacific Islanders. The level of voluntary race and ethnicity data reporting by reporting area and local agencies may be affected by questions regarding the validity and reliability of these categories as predictors for differences in health status among racial and ethnic groups (7). Local and reporting area agencies may have placed a low priority on the collection of these data until questions regarding the usefulness of the information were resolved. In addition, the accuracy of race and ethnicity data (i.e., the correspondence of these data to the patient's self-perceived identity) has never been assessed in NETSS. Evaluations to address these issues will facilitate efforts to improve reporting completeness and data quality. One important limitation of the study described in this report is that the analysis uses data reported at the national rather than the reporting area level. Because reporting areas are neither required to send these data to CDC nor to use the federal standards for collecting these data, reporting completeness may be underestimated at the national level. The difference between completeness at the federal and reporting area levels for these diseases has never been assessed. Markers such as race and ethnicity remain important predictors of risks for disease and therefore are useful for targeting disease prevention and control efforts (8). In 1997, the Secretary of the U.S. Department of Health and Human Services (HHS) mandated that all HHS-supported data systems collect race and ethnicity data (D.E. Shalala, HHS, personal communication, 1997). In addition, a revised OMB Statistical Directive 15, to be adopted by federal programs no later than January 1, 2003, will have two categories for ethnicity, "Hispanic or Latino" and "Not Hispanic or Latino," and five categories for race, American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, and White (9). The revised standards will be implemented by the Bureau of the Census in the 2000 decennial census (which will be the denominator data for surveillance data analysis) and adopted by other federal programs, including NETSS, before January 1, 2003. CDC will work closely with local and reporting area health departments to improve the quality and completeness of NETSS data. For example, planned additions to the NETSS reporting software to include a variable for source of report that will provide national, reporting area, and local surveillance staff the opportunity to identify, investigate, and address patterns of incompleteness. In addition, modification of the NETSS data format to adopt the OMB revisions could allow patients to self-report more accurately their racial background (although these standards would need to be accepted and implemented at the point of data collection and by reporting area and local surveillance systems). Finally, changes to allow access to NETSS data over the Internet may increase use of the data and stimulate more complete reporting. References
Categories for reporting race through NETSS from 1994 through 1997 were American Indian or Alaskan Native, Asian or Pacific Islander, black, white, and unknown. Categories for reporting ethnicity were "Hispanic origin," "not of Hispanic origin," and unknown. These categories are recommended in the 1978 Office of Management and Budget (OMB) Statistical Directive No. 15 for persons self-reporting their race and ethnicity (2). ** The OMB single standard categories for collecting race/ethnicity data used before 1992 in NETSS were American Indian or Alaskan Native; Asian or Pacific Islander; black, not Hispanic; Hispanic; and white, not Hispanic (2). Table_1 Note: To print large tables and graphs users may have to change their printer settings to landscape and use a small font size.
TABLE 1. Completeness of reporting of core variables for selected nationally notifiable diseases reported as individual* case
records, by year -- National Electronic Telecommunications System for Surveillance, 1994-1997
=====================================================================================================================================
1994 1995 1996 1997
--------------- --------------- -------------- --------------------
Variable No. (%) No. (%) No. (%) No. (%)
------------------------------------------------------------------------------------------------
Race and ethnicity 75,531 (53) 77,468 (55) 74,356 (53) 63,051 (52)
Race 100,917 (71) 100,661 (72) 98,415 (70) 82,344 (68)
Ethnicity 83,762 (59) 85,743 (61) 84,482 (60) 73,174 (60)
Age 138,399 (97) 137,635 (98) 138,658 (98) 118,754 (98)
Sex 141,927 (99) 139,618 (99) 136,676 (97) 115,546 (95)
------------------------------------------------------------------------------------------------
Total number of cases reported as individual records for the selected national notifiable diseases was 142,893 in1994, 140,690 in 1995,
141,629 in 1996, and 121,452 in 1997.
=====================================================================================================================================
Return to top. Table_2 Note: To print large tables and graphs users may have to change their printer settings to landscape and use a small font size.
TABLE 2. Completeness of reporting of race and ethnicity for selected nationally notifiable diseases -- National Electronic
Telecommunications System for Surveillance, 1994-1997
=================================================================================================================================================================================
Complete race and ethnicity information
--------------------------------------------------------------------------
Reported as individual cases 1994 1995 1996 1997 Spearman
------------------------------------------- --------------- --------------- --------------- ----------------- rank test
Disease 1994 1995 1996 1997 No. (%) No. (%) No. (%) No. (%) for trend
-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Botulism, foodborne 50 24 25 29 30 ( 60) 10 (42) 14 ( 56) 20 ( 69) NS*
Botulism, infant 88 54 80 75 52 ( 59) 31 (57) 53 ( 66) 60 ( 80) NS
Botulism, other 8 19 22 19 5 ( 63) 10 (53) 10 ( 45) 6 ( 32) D+
Brucellosis 154 98 112 78 76 ( 49) 51 (52) 49 ( 44) 29 ( 37) NS
Cholera 40 23 4 6 16 ( 40) 11 (48) 3 ( 75) 3 ( 50) NS
Diphtheria 2 0 2 4 2 (100) -- -- 1 ( 50) 3 ( 75) NS
Escherichia coli O157:H7 1,459 2,139 2,741 2,473 649 ( 44) 988 (46) 1,355 ( 49) 1,297 ( 52) I&
Haemophilus influenzae,
invasive 1,253 1,180 1,165 1,091 771 ( 62) 720 (61) 616 ( 53) 662 ( 61) NS
Hansen disease (leprosy) 122 125 97 91 88 ( 72) 84 (67) 64 ( 66) 64 ( 70) NS
Hepatitis A 28,006 31,582 31,032 28,305 17,460 ( 62) 19,919 (63) 17,734 ( 57) 15,670 ( 55) NS
Hepatitis B 13,265 10,805 10,637 9,720 7,411 ( 56) 6,292 (58) 6,119 ( 58) 5,208 ( 54) NS
Hepatitis, non A, non B 4,955 2,956 1,070 782 2,714 ( 55) 1,918 (65) 700 ( 65) 469 ( 60) NS
Legionellosis 1,681 1,241 1,198 1,102 837 ( 50) 714 (58) 628 ( 52) 634 ( 58) NS
Lyme disease 13,447 11,700 16,455 12,289 6,031 ( 45) 6,035 (52) 8,445 ( 51) 6,706 ( 55) NS
Malaria 1,336 1,419 1,800 1,877 793 ( 59) 850 (60) 1,086 ( 60) 953 ( 51) NS
Measles 971 290 549 171 620 ( 64) 158 (54) 211 ( 38) 114 ( 67) NS
Meningococcal disease 3,022 3,243 3,437 3,170 1,846 ( 61) 2,160 (67) 2,198 ( 64) 2,030 ( 64) NS
Mumps 1,527 893 744 640 760 ( 50) 357 (40) 355 ( 48) 308 ( 48) NS
Pertussis 4,745 5,137 7,796 5,957 2,221 ( 47) 2,547 (50) 3,969 ( 51) 3,382 ( 57) I&
Plague 17 9 5 4 15 ( 88) 8 (89) 5 (100) 4 (100) I@
Psittacosis 41 64 42 31 15 ( 37) 40 (63) 27 ( 64) 17 ( 55) NS
Rabies,human 6 5 3 1 3 ( 50) 3 (60) 2 ( 67) 0 ( 0) NS
Rocky Mountain spotted fever 478 590 831 389 247 ( 52) 336 (57) 479 ( 58) 243 ( 62) I&
Rubella 242 127 238 171 189 ( 78) 95 (75) 178 ( 75) 82 ( 48) D+
Rubella, (100)
congenital syndrome 7 6 4 5 7 2 (33) 3 ( 75) 2 ( 40) NS
Salmonellosis 38,170 39,627 38,927 34,347 17,552 ( 46) 18,942 (48) 18,387 ( 47) 15,630 ( 46) NS
Shigellosis 27,057 26,709 22,026 18,074 14,710 ( 54) 14,841 (56) 11,322 ( 51) 9,150 ( 51) NS
Tetanus 54 41 36 45 30 ( 56) 25 (61) 27 ( 75) 37 ( 82) I&
Toxic-shock syndrome
(staphylococcal) 195 186 144 142 123 ( 63) 121 (65) 91 ( 63) 97 ( 68) NS
Trichinosis 32 29 11 8 7 ( 22) 6 (21) 3 ( 27) 2 ( 25) NS
Typhoid fever 461 369 396 356 251 ( 54) 194 (53) 222 ( 56) 169 ( 47) NS
Total 142,893 140,690 141,629 121,452 75,531 ( 53) 77,468 (55) 74,356 ( 53) 63,051 ( 52) NS
-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
* No significant change.
+ Significant decrease (p<=0.01).
& Significant increase (p<=0.01).
@ Marginally significant increase (p<=0.1).
=================================================================================================================================================================================
Return to top. Table_3 Note: To print large tables and graphs users may have to change their printer settings to landscape and use a small font size.
TABLE 3. Completeness of reporting of race and ethnicity for selected nationally notifiable diseases, by state -- National
Electronic Telecommunications System for Surveillance, 1994-1997
===========================================================================================================================================================================
Complete race and ethnicity information
-----------------------------------------------------------------------------
Reported as individual cases 1994 1995 1996 1997 Spearman
----------------------------------------- --------------- -------------- --------------- --------------- rank test
Reporting area 1994 1995 1996 1997 No. (%) No. (%) No. (%) No. (%) for trend
-------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Alabama 1,580 1,450 1,150 1,072 6 ( 0) 3 ( 0) 0 ( 0) 0 ( 0) D*
Alaska 345 175 370 178 0 ( 0) 0 ( 0) 28 ( 8) 29 ( 16) I+
Arizona 3,888 3,935 3,890 4,521 2,864 ( 74) 2,728 ( 69) 1,541 ( 40) 2,010 ( 44) NS&
Arkansas 1,334 1,456 1,343 1,154 1 ( 0) 959 ( 66) 1,106 ( 82) 622 ( 54) NS
California 11,549 11,184 11,424 10,505 6,259 ( 54) 6,254 ( 56) 6,192 ( 54) 5,356 ( 51) NS
Colorado 2,524 2,189 2,521 2,040 0 ( 0) 365 ( 17) 324 ( 13) 222 ( 11) NS
Connecticut 3,377 2,879 4,306 3,225 996 ( 29) 970 ( 34) 1,300 ( 30) 936 ( 29) NS
Delaware 405 562 563 310 21 ( 5) 22 ( 4) 23 ( 4) 38 ( 12) NS
District of Columbia 324 438 435 284 297 ( 92) 372 ( 85) 419 ( 96) 210 ( 74) NS
Florida 9,180 7,174 7,202 6,815 8,213 ( 89) 6,594 ( 92) 6,513 ( 90) 6,082 ( 89) NS
Georgia 5,069 3,580 3,467 3,275 499 ( 10) 995 ( 28) 1,222 ( 35) 1,122 ( 34) NS
Hawaii 708 724 811 696 176 ( 25) 271 ( 37) 155 ( 19) 187 ( 27) NS
Idaho 934 896 763 1,043 264 ( 28) 240 ( 27) 172 ( 23) 206 ( 20) D@
Illinois 5,135 5,349 4,650 4,931 3,848 ( 75) 4,141 ( 77) 3,852 ( 83) 4,213 ( 85) I**
Indiana 2,098 1,921 1,686 1,446 679 ( 32) 692 ( 36) 630 ( 37) 638 ( 44) I**
Iowa 1,053 1,125 1,166 1,228 4 ( 0) 25 ( 2) 55 ( 5) 498 ( 41) I**
Kansas 805 1,019 1,099 967 381 ( 47) 653 ( 64) 767 ( 70) 707 ( 73) I**
Kentucky 1,109 1,044 1,982 1,139 876 ( 79) 348 ( 33) 482 ( 24) 286 ( 25) NS
Louisiana 1,789 1,659 1,804 1,263 31 ( 2) 183 ( 11) 335 ( 19) 140 ( 11) NS
Maine 373 446 386 305 0 ( 0) 1 ( 0) 0 ( 0) 18 ( 6) NS
Maryland 2,917 3,149 3,656 2,811 1,571 ( 54) 1,732 ( 55) 2,133 ( 58) 1,523 ( 54) NS
Massachusetts 4,065 3,432 4,220 3,094 1,295 ( 32) 986 ( 29) 1,199 ( 28) 1,022 ( 33) NS
Michigan 2,751 2,649 2,888 3,616 1,079 ( 39) 867 ( 33) 806 ( 28) 917 ( 25) D@
Minnesota 2,472 2,059 2,187 1,844 504 ( 20) 502 ( 24) 865 ( 40) 782 ( 42) I**
Mississippi 1,080 1,233 1,369 870 757 ( 70) 859 ( 70) 922 ( 67) 322 ( 37) D@
Missouri 3,204 3,888 3,094 2,569 1,922 ( 60) 2,477 ( 64) 2,237 ( 72) 1,796 ( 70) NS
Montana 248 689 407 215 15 ( 6) 110 ( 16) 60 ( 15) 35 ( 16) NS
Nebraska 949 757 580 684 490 ( 52) 393 ( 52) 229 ( 39) 248 ( 36) NS
Nevada 771 1,007 1,058 974 493 ( 64) 727 ( 72) 876 ( 83) 862 ( 89) I**
New Hampshire 466 442 521 476 105 ( 23) 78 ( 18) 196 ( 38) 298 ( 63) NS
New Jersey 4,664 5,727 5,265 4,856 3,736 ( 80) 4,091 ( 71) 2,761 ( 52) 2,035 ( 42) D@
New Mexico 2,198 2,833 1,714 1,492 2,143 ( 97) 2,791 ( 99) 1,675 ( 98) 1,182 ( 79) NS
New York 10,749 8,623 9,252 7,089 5,441 ( 51) 5,197 ( 60) 5,834 ( 63) 4,873 ( 69) D@
North Carolina 4,240 3,319 3,473 2,616 3,076 ( 73) 2,546 ( 77) 2,661 ( 77) 2,027 ( 77) NS
North Dakota++ -- 282 317 111 -- -- 24 ( 9) 311 ( 98) 105 ( 95) NS
Ohio 4,519 4,816 4,083 3,568 2,253 ( 50) 1,642 ( 34) 1,003 ( 25) 839 ( 24) D@
Oklahoma 1,726 2,622 3,728 2,345 624 ( 36) 933 ( 36) 1,295 ( 35) 925 ( 39) NS
Oregon 2,278 3,756 1,948 1,413 1,299 ( 57) 2,249 ( 60) 1,081 ( 55) 890 ( 63) NS
Pennsylvania 5,107 5,779 8,267 5,718 2,889 ( 57) 3,509 ( 61) 4,669 ( 56) 3,333 ( 58) NS
Rhode Island 907 726 953 885 339 ( 37) 287 ( 40) 362 ( 38) 432 ( 49) NS
South Carolina 1,343 1,185 1,437 1,043 663 ( 49) 630 ( 53) 613 ( 43) 476 ( 46) NS
South Dakota 486 463 306 199 485 (100) 463 (100) 306 (100) 199 (100) NS
Tennessee 3,357 4,764 2,293 1,869 1,483 ( 44) 2,597 ( 55) 1,541 ( 67) 1,425 ( 76) I**
Texas 12,352 10,822 11,163 10,075 10,292 ( 83) 8,962 ( 83) 8,834 ( 79) 7,255 ( 72) D@
Utah 1,726 1,967 2,264 1,138 1,035 ( 60) 1,292 ( 66) 1,338 ( 59) 670 ( 59) NS
Vermont&& 254 256 507 439 0 ( 0) 0 ( 0) 0 ( 0) 0 ( 0) --
Virginia 2,558 2,487 2,825 2,203 671 ( 26) 577 ( 23) 882 ( 31) 317 ( 14) NS
Washington 3,569 3,375 3,599 2,475 2,297 ( 64) 2,351 ( 70) 2,119 ( 59) 1,644 ( 66) NS
West Virginia 397 412 337 218 80 ( 20) 113 ( 27) 95 ( 28) 54 ( 25) NS
Wisconsin 2,548 2,112 1,985 3,106 1,557 ( 61) 1,153 ( 55) 1,191 ( 60) 1,896 ( 61) NS
Wyoming 365 348 246 150 128 ( 35) 156 ( 45) 102 ( 41) 70 ( 47) NS
New York City 5,048 5,506 4,669 4,894 1,394 ( 28) 1,358 ( 25) 1,044 ( 22) 1,079 ( 22) D@
Total 142,893 140,690 141,629 121,452 75,531 ( 53) 77,468 ( 55) 74,356 ( 53) 63,051 ( 52) NS
-------------------------------------------------------------------------------------------------------------------------------------------------------------------------
* Marginally significant decrease (p<=0.1).
+ Marginally significant increase (p<=0.1).
& No significant change.
@ Significant decrease (p<=0.01).
** Significant increase (p<=0.01).
++ 1994 data were reported in a different NETSS format; race and ethnicity data were reported as a single variable.
&& Collects but does not report race and ethnicity data through NETSS to CDC.
===========================================================================================================================================================================
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