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Reporting Race and Ethnicity Data -- National Electronic Telecommunications System for Surveillance, 1994-1997

Reporting 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 Note

Editorial 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

  1. US Department of Health and Human Services. Healthy people 2000: national health promotion and disease prevention objectives -- full report, with commentary. Washington, DC: US Department of Health and Human Services, Public Health Service, 1991; DHHS publication no. (PHS)91-50212.

  2. Executive Office of the President, Office of Management and Budget. Directive No. 15: race and ethnic standards for federal statistics and administrative reporting. In: Statistical policy handbook. Washington, DC: US Department of Commerce, Office of Federal Statistical Policy and Standards, 1978:37-8.

  3. Koo D, Wetterhall SF. History and current status of the National Notifiable Diseases Surveillance System. Journal of Public Health Management Practice 1996;2(4):4-10.

  4. Buehler JW, Stroup DF, Klaucke DN, Berkelman RL. The reporting of race and ethnicity in the National Notifiable Diseases Surveillance System. Public Health Rep 1989;104:457-65.

  5. CDC. Reporting of race and ethnicity in the National Notifiable Diseases Surveillance System, 1990. MMWR 1992;41:653-7.

  6. Vogt RL. Laboratory reporting and disease surveillance. Journal of Public Health Management Practice 1996;2(4):28-30.

  7. CDC. Use of race and ethnicity in public health surveillance: summary of the CDC/ATSDR workshop. MMWR 1993;42(no. RR-10).

  8. Williams DR. Race and health: basic questions, emerging directions. Ann Epidemiol 1997;7:322-33.

  9. Executive Office of the President, Office of Management and Budget. Revisions to the standards for the classification of federal data on race and ethnicity. Federal Register 1997;62:58782-90.

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
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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.
=====================================================================================================================================

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Table_2
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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).
=================================================================================================================================================================================

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Table_3
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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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