An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Database: Ryan White CARE Act Title IV Data Reporting System


Purpose Of The Database And Study Design: Title IV of the Ryan White CARE Act funds the development and operation of primary care and social services for children, youth, and women living with HIV, as well as their families. The Title IV program supports comprehensive, community-based, coordinated services that integrate both health and social services. Title IV programs must also develop strategies to effectively link with HIV research studies funded by the National Institutes of Health (NIH) and other entities. The Title IV program actively collaborates with the NIH in the Reaching for Excellence in Adolescent Care and Health (REACH) project. Data from the Title IV Data Reporting System are used for administrative and fiscal monitoring and to confirm conformance with statutory provisions set forth in Title IV of the Ryan White CARE Act. Additionally, the Title IV Data Reporting System is designed to assist HAB to describe to Congress and other policymakers the unique characteristics of service delivery to HIV positive children and their families, as well as prevention of HIV transmission to women and children at-risk.

Nature Of The Data Collected: Cross-sectional administrative, clinical, and support service data

Unit Of Analysis: Program grantees and their subcontractors

Data Collection Methods: Tabular reports must be completed annually by Title IV grantees and their subcontractors. Grantees are responsible for the quality of data reported by sub-contractors and for ensuring that the data reported represent unique, unduplicated client counts. Detailed criteria are provided to the grantees regarding the definition of enrolled clients, family members, and other sub-populations that may be served by the Title IV program.

General Attributes: A total of 53 grantees currently submit annual reports to HAB; five additional adolescent specific grantees will initiate data reporting in FY 2000

Major Data Constructs And Key Data Elements: Data collected include: organizational structure of the grantee and their subcontractors; demographic characteristics and clinical status of clients who are enrolled in the Title IV program; housing/living arrangements; primary caregiver; source of reimbursement for basic medical services; rates of utilization of services by service type; and prevention, outreach, and education activities conducted by the program, including the characteristics of the individuals reached by these services and the frequency with which the services were provided.

Strengths And Weaknesses Of The Study Design And Database: Title IV programs may not have centralized automated information systems that support the data reporting. Client counts may be duplicated due to lack of a centralized information system. Frequency of service use within a Title IV program may be under-counted due to inadequate service tracking systems. Title IV programs vary significantly in design and the array of services provided; those differences may not be accurately reflected in the organization data submitted to the Reporting System. The validity and reliability of the data reported may also be highly variable.

Gaps In The Data Collected And Factors Leading To The Gaps: Minimal clinical data are recorded in the Reporting System.

Feasibility Of Linking With Other Databases: Linkage with other databases is feasible at the local programmatic level. No client identifiers are transmitted to HAB. A cross-Title AAR prototype is in development.

Process To Access The Database And Contact Person: This is not a database accessible to the public. For more information contact: Ivana Williams, HRSA HAB, Deputy Branch Chief, Title IV Programs, Division of Community Based Programs at (301) 443-9051.

Selected Citations:

HIV/AIDS Bureau. Ryan White CARE Act Title IV: Summary Presentation and Comparisons of Selected 1995 and 1996 Data Elements Reported by Grantees. Rockville: HRSA, 1998.

Teitelbaum M, Toland G, Saulsbury K. Ryan White CARE Act Title IV Grant Program: Summary Presentation and Comparisons of Selected 1995 and 1996 Data Elements Reported By Grantees. Cambridge: Abt Associates, Inc., 1994.

Teitelbaum M, Saulsbury K. Ryan White Title IV Grant Program: Summary Presentation and Comparison of 1994 and 1995 Data Elements. Cambridge: Abt Associates, Inc., 1994.

Palinecek J, Hidalgo J, Hutton N, Weiss B. Impact of on-site social work services on the documentation of client and family-centered information: The experience of Ryan White CARE Act (Title IV) pediatric programs in Maryland. Pediatric AIDS and HIV Infection: Fetus to Adolescent. 7(5): 337-345, 1996.