An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Database: Uniform Reporting System (URS) Client Data Demonstration Project


Purpose Of The Database And Study Design: In 1994, HRSA initiated the URS to demonstrate the feasibility of collecting client demographic and service data on HIV/AIDS infected/affected clients across a network of service providers and the usefulness of these data for planning and evaluation purposes at both the local and national levels. Through this system, HRSA sought to overcome the limitations of the AAR, the national reporting system for the Ryan White CARE Act. The AAR collects data aggregated at the grantee level and has duplicated counts of clients.

Nature Of The Data Collected: Demographic information, service use, and health indicators are collected.

Unit Of Analysis: Clients of providers funded by Title I or Title II of the Ryan White CARE Act

Data Collection Methods: Demographic information, service utilization, and health indicators of all clients receiving services at providers funded by the Ryan White CARE Act are collected by service providers every six months and sent to their Title I or Title II grantee. The grantees process the data from all of their providers and send these data to HRSA. Also, they continually monitor the quality of the data they receive from their providers and immediately address any problems that arise with the submission of data from their providers. Continuing clients may be followed longitudinally through the use of a unique identifier.

General Attributes: TheURS is a voluntary program, established in 1994 to collect information from several Title I and Title II grantees and their subcontracted service providers about their individual clients. In 1997, through a competitive process, HRSA awarded seven contracts including five Title I sites and two Title II sites, one of which was a new grantee. HRSA supports, both financially and technically, the implementation and collection of the URS data at these seven sites. Although it was originally designed to include clients who received services from Title I and Title II providers, a number of the participating providers also receive funding from Titles III and IV of the Ryan White CARE Act. Therefore, the URS provides a relatively complete picture of all Ryan White CARE Act clients at these seven sites.

Major Data Constructs And Key Data Elements: Client demographics, service utilization, and health status indicators are collected.

Strengths And Weaknesses Of The Study Design And Database: One strength of the database is that an unique identifier is used to protect the anonymity of the clients, and as a further safeguard, this unique identifier is encrypted before it is sent to HRSA. Another strength is that grantees provide technical assistance to all their providers regarding the appropriate and accurate collection and entry of relevant data.

Gaps In The Data Collected And Factors Leading To The Gaps: Althoughclient-level clinical data are not currently collected, HAB is in the process of changing the database to include several outcome measures relating to medical outcomes and whether standards of care are being followed at Ryan White CARE Act providers.

Feasibility Of Linking With Other Databases: Linkages might be achieved through encoding of unique identifiers of other databases using the same algorithm as the systems used for the URS.

Process To Access The Database And Contact Person: Gaining access to the database will be determined on a case by case basis. For more information, please contact Jill M. Jacobsen, PhD, Statistician, HRSA, HAB, Office of Science and Epidemiology at (301) 443-6560.

Selected Citations:

Marconi K, Durbin RC, Niemcryk SJ, Baitty RL. Retention in primary health care of clients diagnosed with HIV by Ryan White CARE Act health care providers over a 30-month period. International Conference on AIDS. 12: 854 (Abstract No. 42402), 1998.