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Response to Letter to the Editor
LETTER TO THE EDITOR
Response to Letter to the Editor: regarding “The Completeness, Validity, and Timeliness of AIDS Surveillance Data” Ms. Samantha Books in her letter (1) about our paper, “The completeness, validity, and timeliness of AIDS surveillance data,” (2) raises several important questions regarding the selection of evaluation study sites and protection of confidential HIV/AIDS surveillance data. The overall purpose of evaluating public health surveillance is to promote the most effective use of health resources (3). When resources are scarce, an assessment of the importance of the problem, the current purpose of the system, and the usefulness of the system should be done for every system. Based on that assessment, a more detailed evaluation may be necessary (3). CDC funds 65 health department project areas, which include all US states and territories, the District of Columbia, and six large cities to conduct routine surveillance for HIV/AIDS. In 1994, an additional $1.2 million was allocated to evaluate the impact of the 1993 expansion of the AIDS surveillance case definition, and all 65 project areas were eligible to apply. A program announcement invited surveillance programs to submit evaluation proposals, to which 16 surveillance programs applied. According to an internal CDC protocol, each application was technically reviewed, scored by two independent objective reviewers, and ranked by score. Sites were selected for participation in order of rank until funding was exhausted. Although four sites, Louisiana, Massachusetts, New York City, and San Francisco were funded, the New York City program used different methods from those used by the other programs and chose to disseminate their findings independently. Had more funding been available to afford participation of additional sites, generalizability of results and the amount of locally useful information may have been greater. Independent of this study, however, additional evaluations of the impact of the case definition expansion were conducted (4, 5). And most recently, CDC has funded eight sites to evaluate their HIV surveillance systems; preliminary results should be available in 2003. The list of health care facilities was exhaustive and stratified by facility type to ensure good representation of outpatient clinics and private providers. We hypothesized that cases of AIDS most likely to be under-reported would be those among persons whose source of health care had not been routinely in© 2002 Elsevier Science Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010
cluded in the active surveillance network, as tertiary care facilities had been. Because previous AIDS surveillance case definitions had consisted of opportunistic illnesses and conditions which reflected a later stage in the spectrum of untreated HIV infection, active AIDS surveillance had focused on inpatient facilities. In Louisiana and San Francisco, simple random sampling was conducted within each facility category. Sample size (but not facility selection) was dependent on the number of surveillance staff available to conduct the evaluation. We recognize that the effect of San Francisco’s use of a weighted sample could be to overestimate completeness of reporting, as was the voluntary participation of facilities. Security and confidentiality of HIV/AIDS surveillance data are protected in all 65 project areas by State and Territorial public health laws governing notifiable disease reporting (6). State confidentiality laws provide greater protection of HIV/ AIDS surveillance data than that of information collected by private health care providers. HIV/AIDS surveillance data reported to CDC are covered by a federal assurance of confidentiality under Section 308(d) of the Public Health Service Act. CDC provides extensive technical assistance to health department surveillance programs and has published guidelines for security and confidentiality practices that address issues of data access, storage, and encryption; and storage or removal of identifying information (7). Finally, for renewal of funding, surveillance programs must demonstrate that their security and confidentiality procedures meet CDC requirements. Regular evaluations should be conducted to assure that surveillance systems operate efficiently and continue to meet public health need (3). Although the importance of conducting evaluation of public health surveillance systems is well recognized, appropriations are often woefully inadequate. R.M. Klevens, D.D.S., M.P.H. P.L. Fleming, Ph.D. J.J. Neal, Ph.D. Centers for Disease Control and Prevention National Center for HIV, STD, and TB Prevention Division of HIV/AIDS Prevention 1600 Clifton Road, MS E-47 Atlanta, GA 30333, USA 1047-2797/03/$–see front matter PII S1047-2797(02)00421-0
AEP Vol. 13, No. 1 January 2003: 78–79
REFERENCES 1. Books S. Letter to the editor. Ann Epidemiol. 2002. 2. Klevens RM, Fleming PL, Li J, et al. The completeness, validity, and timeliness of AIDS surveillance data. Ann Epidemiol. 2001;11:443–449. 3. Romaguera RA, German RR, Klaucke DN. Evaluating Public Health Surveillance. In: Teutsch SM, Churchill RE, eds. Principles and Practice of Public Health Surveillance. 2nd ed. New York, NY: Oxford University Press; 2000:176–193.
Klevens et al. RESPONSE TO LETTER TO THE EDITOR
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4. CDC. Assessment of laboratory reporting to supplement active AIDS surveillance—Colorado. MMWR. 1993;42:749–752. 5. Klevens RM, Fleming PL, Li J, Karon J. Impact of laboratory-initiated reporting of CD4 T-lymphocytes on US AIDS surveillance. JAIDS. 1997;14:56–60. 6. Gostin LO, Lazzarini Z, Neslund VS, Osterholm M. The public health information infrastructure. JAMA. 1996;275:1921–1927. 7. CDC. Guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection and acquired immunodeficiency syndrome. MMWR 1999;48(RR13):10–16.
Response to Letter to the Editor: regarding “The Completeness, Validity, and Timeliness of AIDS Surveillance Data” Ms. Samantha Books in her letter (1) about our paper, “The completeness, validity, and timeliness of AIDS surveillance data,” (2) raises several important questions regarding the selection of evaluation study sites and protection of confidential HIV/AIDS surveillance data. The overall purpose of evaluating public health surveillance is to promote the most effective use of health resources (3). When resources are scarce, an assessment of the importance of the problem, the current purpose of the system, and the usefulness of the system should be done for every system. Based on that assessment, a more detailed evaluation may be necessary (3). CDC funds 65 health department project areas, which include all US states and territories, the District of Columbia, and six large cities to conduct routine surveillance for HIV/AIDS. In 1994, an additional $1.2 million was allocated to evaluate the impact of the 1993 expansion of the AIDS surveillance case definition, and all 65 project areas were eligible to apply. A program announcement invited surveillance programs to submit evaluation proposals, to which 16 surveillance programs applied. According to an internal CDC protocol, each application was technically reviewed, scored by two independent objective reviewers, and ranked by score. Sites were selected for participation in order of rank until funding was exhausted. Although four sites, Louisiana, Massachusetts, New York City, and San Francisco were funded, the New York City program used different methods from those used by the other programs and chose to disseminate their findings independently. Had more funding been available to afford participation of additional sites, generalizability of results and the amount of locally useful information may have been greater. Independent of this study, however, additional evaluations of the impact of the case definition expansion were conducted (4, 5). And most recently, CDC has funded eight sites to evaluate their HIV surveillance systems; preliminary results should be available in 2003. The list of health care facilities was exhaustive and stratified by facility type to ensure good representation of outpatient clinics and private providers. We hypothesized that cases of AIDS most likely to be under-reported would be those among persons whose source of health care had not been routinely in© 2002 Elsevier Science Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010
cluded in the active surveillance network, as tertiary care facilities had been. Because previous AIDS surveillance case definitions had consisted of opportunistic illnesses and conditions which reflected a later stage in the spectrum of untreated HIV infection, active AIDS surveillance had focused on inpatient facilities. In Louisiana and San Francisco, simple random sampling was conducted within each facility category. Sample size (but not facility selection) was dependent on the number of surveillance staff available to conduct the evaluation. We recognize that the effect of San Francisco’s use of a weighted sample could be to overestimate completeness of reporting, as was the voluntary participation of facilities. Security and confidentiality of HIV/AIDS surveillance data are protected in all 65 project areas by State and Territorial public health laws governing notifiable disease reporting (6). State confidentiality laws provide greater protection of HIV/ AIDS surveillance data than that of information collected by private health care providers. HIV/AIDS surveillance data reported to CDC are covered by a federal assurance of confidentiality under Section 308(d) of the Public Health Service Act. CDC provides extensive technical assistance to health department surveillance programs and has published guidelines for security and confidentiality practices that address issues of data access, storage, and encryption; and storage or removal of identifying information (7). Finally, for renewal of funding, surveillance programs must demonstrate that their security and confidentiality procedures meet CDC requirements. Regular evaluations should be conducted to assure that surveillance systems operate efficiently and continue to meet public health need (3). Although the importance of conducting evaluation of public health surveillance systems is well recognized, appropriations are often woefully inadequate. R.M. Klevens, D.D.S., M.P.H. P.L. Fleming, Ph.D. J.J. Neal, Ph.D. Centers for Disease Control and Prevention National Center for HIV, STD, and TB Prevention Division of HIV/AIDS Prevention 1600 Clifton Road, MS E-47 Atlanta, GA 30333, USA 1047-2797/03/$–see front matter PII S1047-2797(02)00421-0
AEP Vol. 13, No. 1 January 2003: 78–79
REFERENCES 1. Books S. Letter to the editor. Ann Epidemiol. 2002. 2. Klevens RM, Fleming PL, Li J, et al. The completeness, validity, and timeliness of AIDS surveillance data. Ann Epidemiol. 2001;11:443–449. 3. Romaguera RA, German RR, Klaucke DN. Evaluating Public Health Surveillance. In: Teutsch SM, Churchill RE, eds. Principles and Practice of Public Health Surveillance. 2nd ed. New York, NY: Oxford University Press; 2000:176–193.
Klevens et al. RESPONSE TO LETTER TO THE EDITOR
79
4. CDC. Assessment of laboratory reporting to supplement active AIDS surveillance—Colorado. MMWR. 1993;42:749–752. 5. Klevens RM, Fleming PL, Li J, Karon J. Impact of laboratory-initiated reporting of CD4 T-lymphocytes on US AIDS surveillance. JAIDS. 1997;14:56–60. 6. Gostin LO, Lazzarini Z, Neslund VS, Osterholm M. The public health information infrastructure. JAMA. 1996;275:1921–1927. 7. CDC. Guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection and acquired immunodeficiency syndrome. MMWR 1999;48(RR13):10–16.