An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Database: Immunology Case Registry (ICR)


Purpose Of The Database And Study Design: The ICR module supports the maintenance of local and national registries for the tracking of HIV disease among VA patients. The module provides many capabilities for VA medical centers (VAMC) that provide care and treatment to HIV positive patients. ICR supports the identification and categorization of patients with HIV disease. It is used to generate reports for the CDC. The ICR automatically extracts data for inclusion in the VA national ICR. The Registry is used to provide VA-wide review of patient demographic characteristics, clinical aspects of HIV disease, and resource use involved in caring for patients. The Registry also supports national HIV-related research studies approved by the VA AIDS Program Office. The ICR also provides a variety of management reports for local use, including frequency of visits, as well as the number of laboratory tests and prescriptions per patient. The ICR produces several reports for the VAMCs including: categorization of patients according to severity of HIV disease; data necessary for AIDS case reporting to the CDC, automatic generation of CDC report forms on patients, and lists of patients that have not been seen at the VAMC for a specified length of time. The ICR provides several clinical and administrative reports for VAMC and headquarter's use. The ICR module retrieves several other local data files that contain information concerning diagnosis, prescriptions, surgical procedures, laboratory tests, radiology exams, dental care, patient demographic characteristics, hospital admissions, and clinical visits. This process allows identified clinical staff to take advantage of the wealth of data supported through local databases. The ICR creates a simple process for entering and tracking a patient through the ICR. Users need only identify the patient and determine the disease category for that patient. Virtually all other data employed by the ICR module is retrieved through other local database modules (e.g., Pharmacy, Laboratory, and Radiology). An extra level of security is provided by the VA to be consistent with VA laws and policies. Essential information is encrypted. Patient names and other identifying information (encrypted or not) are never transmitted to the national registry.

Nature Of The Data Collected: Longitudinal clinical and administrative records

Unit Of Analysis: Individual patient

Data Collection Methods: Data are entered by local staff at the VAMC as part of the creation and maintenance of the patients’ automated medical record. Data extracts are automatically conducted by the VA’s mainframe system.

General Attributes: ICR was fully implemented in 1992 across all the VAMCs and contains access to complete medical records including demographic information, diagnoses, resource utilization, pharmacy and laboratory data on over 45,000 patients.

Major Data Constructs And Key Data Elements: Patient demographic and military service characteristics, CD4 staging, numbers of outpatient visits, inpatient discharge summaries, inpatient surgical and other procedures, outpatient pharmacy data, laboratory and radiology data, dental care data, and information required to complete CDC AIDS case reports.

Strengths And Weaknesses Of The Study Design And Database: The ICR provides local and national tracking of HIV positive veterans by severity of the disease. Thus, ICR supplies patient level longitudinal information based on immune status and presence/absence of OIs.

Gaps In The Data Collected And Factors Leading To The Gaps: Unavailable

Feasibility Of Linking With Other Databases: Depending upon the objectives and study designs, linkages with other databases are feasible. These linkages can be achieved through encoding of unique identifiers of ICR and other databases by developing a third code that uses a common algorithmic table.

Process To Access The Database And Contact Person: Sophia Chang, MD, Director, Center for Quality Management, VA Palo Alto Health Care System, AIDS Service, (650) 493-5000 or (650) 849-0273.

Selected Citations:

Rahman A, Kendall S, Deyton LR, Rimland D, Simberkoff M, Goetz M. Trends in antiretroviral drug utilization for HIV/AIDS patients treated at US Department of Veterans Affairs (VA) medical centers. International Conference of Healthcare Resource Allocation for HIV/AIDS and Other Life-Threatening Illnesses, 1999.

Rahman A, Deyton LR, Goetz MB, Rimland D, Simberkoff MS. Inversion of inpatient/outpatient HIV service utilization: impact of improved therapies, clinical education, and case management in the US Department of Veterans Affairs. International Conference on AIDS. Abstract No. 443/42429, 12: 859, 1998.

McCollum M, McWhinney, S, Brown ER. Predictors of resource utilization in HIV/AIDS at a Veterans Affairs Medical Center. International Conference on AIDS. Abstract No. 60341, 12:1062, 1998.

Simberoff MS, Rabeneck L, Hartigan PM, Menke TJ, Wray NP. Progression data from the Department of Veterans Affairs’ HIV Registry are a model for use of administrative-clinical databases for study of disease. Meeting of the Association of Health Services Research. 14:309-310, 1997.

Douyou R, Guzman P, Romain G, Ireland SJ, Mendoza L, Lopez-Blanco M, Milanes F. Subtle neurological deficits and psychopathological findings in substance-abusing homeless and non-homeless veterans. Journal of Neuropsychiatry and Clinical Neuroscience. 10(2): 210-215, 1998.

Levine VR. Epidemiology of AIDS and tuberculosis among United States Veterans. International Journal of Tuberculosis and Lung Disease. 2(5): 405-412, 1998.

Rabeneck L, Hartigan PM, Huang IW, Souchek J, Wray NP. Predicting outcomes in HIV positive veterans: II. Survival after AIDS. Journal of Clinical Epidemiology. 50(11): 1241-1248, 1997.

Rabeneck L, Hartigan PM, Huang IW, Souchek J, Wray NP. Predicting outcomes in HIV positive veterans: I. progression to AIDS. Journal of Clinical Epidemiology. 50(11): 1231-1240, 1997

Hoff RA, Beam-Goulet J, Rosenheck RA. Mental disorder as a risk factor for human immunodeficiency virus infection in a sample of veterans. Journal of Nervous and Mental Disorders. 185(9): 556-560, 1997.

Bennett CL, Curtis JR, Achenbach C, Arno P, Bennett R, Fahs MC, Horner RD, Shaw-Taylor Y, Andrulus D. US hospital care for HIV positive persons and the role of public, private, and Veterans Administration hospitals. Journal of AIDS and Human Retrovirology. 13(5): 416-421, 1996.

Simberoff MS, Hartigan PM, Hamilton JD, Day PL, et al. Long-term follow-up of symptomatic HIV positive patients originally randomized to early versus later zidovudine treatment: report of a Veterans Affairs Cooperative Study. Journal of AIDS and Human Retrovirology. 11(2): 142-150, 1996.

O’Brien WA, Hartigan, PM, Martin D, Esinhart J, et al. Changes in plasma HIV-1 RNA and CD4+ lymphocyte counts and the risk of progression to AIDS. NEJM. 15:334(7): 426-431, 1996.

Bennett CL, Adams J, Bennett RL, Rodriquez D, George L, Cassileth B, Gilman SC. The learning curve for AIDS-related Pneumocystis carinii pneumonia: experience from 3,981 cases in Veterans Affairs Hospitals: 1987-1991. Journal of AIDS and Human Retrovirology. 8(4): 373-378, 1995.

(1) The federal government has also supported basic research and drug and vaccine development. These research topics are outside the scope of this project.