An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Database: Ryan White CARE Act, Special Projects of National Significance (SPNS) Program

07/01/2000

Purpose Of The Database And Study Design: The SPNS Program is supported by Part F of the Ryan White CARE Act to develop innovative models of HIV/AIDS care. These models are designed to address special care needs of HIV positive individuals in minority and hard-to-reach populations. The SPNS projects are designed to be replicable in other parts of the US and to have strong evaluation components. SPNS projects focus on a variety of topics including: managed care, infrastructure development among care providers, access to care through reduction of barriers for specific populations, housing (in collaboration with the Department of Housing and Urban Development), legal advocacy, comprehensive primary care, integration of mental health and primary care, and services for inmates.

Nature Of The Data Collected: Varies by SPNS project

Unit Of Analysis: Varies by SPNS project

Data Collection Methods: Reflecting the unique nature of each SPNS project, data collection methods vary substantially. The data collected is dependent upon the project’s design and the services provided. Several groups of SPNS projects use standardized data collection instruments developed to uniformly capture programmatic, fiscal, client demographic characteristics and health status, and service delivery data.

General Attributes: In Federal Fiscal Year 1999, 87 SPNS grantees were funded.

Major Data Constructs And Key Data Elements: Data elements vary among grantees and are based on the service model used and the scope of the project.

Strengths And Weaknesses Of The Study Design And Database: Given the unique nature of many of the SPNS projects, the study designs and data collection methods vary substantially. The timeliness of reporting and the content of reporting also vary widely among projects.

Gaps In The Data Collected And Factors Leading To The Gaps: Gaps vary among grantees.

Feasibility Of Linking With Other Databases: The feasibility of linkage with other databases varies, based on the data collection strategies used by the project. Some projects rely on clinical, administrative, and insurance claims files that might be linked to other databases at the program level. Unique identifiers are not provided to HAB so linkage at the federal level is not feasible.

Process To Access The Database And Contact Person: These are not databases generally accessible to the public. For more information contact: Barbara Aranda-Naranjo, PhD, Chief, Demonstration Project Development and Evaluation Branch, HRSA HAB, Office of Science and Epidemiology, Special Projects of National Significance Program at (301) 443-9976.

Selected Citations:

Huba GJ, Melchior LA, De Veauuse NF, Hillary K, et al. A national program of innovative AIDS care projects and their evaluation. Home Health Care and Services Quarterly. 17(1): 3-30, 1998.

Gamliel S, Singer B, Marconi K. HIV healthcare delivery and managed care: applications and implications from the Special Projects of National Significance Program. Home Health Care and Services Quarterly. 17(1): 101-109, 1998.

Brady RE, Singer B, Marconi KM. Special Projects of National Significance Program: ten models of adolescent HIV care. Journal of Adolescent Health. 23 (2 Suppl): 1-4, 1998.

Melchior L, Feudo R, Greenberg B, Hodgins A. et al. Outreach to adolescent women with or at high risk for HIV: a report from ten innovative service models. National Conference on Women and HIV. 179 (Abstract No. P2.25), 1997.

Huba G, Hodgins A, Woods E, Kipke M, et al. A profile of adolescent women with or at high risk for HIV: personal and service needs.National Conference on Women and HIV. 178 (Abstract No. P2.24), 1997.

Huba G, Larson T, Marconi K, Melchoir L, et al. Cooperative information sharing, evaluation, and management model for 27 HIV service projects: first year results. International Conference on AIDS. 11(2): 407 (Abstract No. ThD. 50008), 1996.