Introduction

All providers funded by CARE Act grantees are required to submit a completed Ryan White CARE Act Data Report (CADR) annually. It is the responsibility of each grantee to collect one CADR from each of the providers with which it contracts to provide CARE Act services or program support. Title II consortia also must submit one CADR for each of the providers with which they contract.

The purpose of the CADR is to collect information on all clients who receive at least one CARE Act-eligible service during a calendar year. CADR data provides information on the number and characteristics of clients served, the types of services provided, the number of clients receiving each service, and the characteristics of provider agencies. The CADR also requires all medical service providers to provide information on the number of clients:

• Screened and/or treated for co-morbid conditions
• Diagnosed with AIDS-defining conditions, and
• Prescribed combination antiretroviral therapy.

In addition, medical service providers must report the number of clients who received pelvic exams and pap smears, as well as the number of pregnant clients who received antiretroviral medications to prevent perinatal transmission.

Data reported in the CADR are used to broadly assess the impact and quality of CARE Act programs as grantees and their providers strive to serve the vulnerable and undeserved populations most severely impacted by the HIV/AIDS epidemic. The Government Performance and Results Act (GPRA) requires all Federal programs to document progress towards specific measurable objectives. CADR data are used to demonstrate program effectiveness and quality under GPRA. CADR also provides comprehensive CARE Act program information for AIDS advocacy organizations and the Federal government's administrative and legislative branches.

The following is a brief summary description of the CARE Act Data Report. The CADR and instructions for completing the report can be found on the HRSA HIV/AIDS Bureau (HRSA/HAB) website.

Description of the CARE Act Data Report  TOP

The introduction and launch of the CARE Act Data Report form in the summer of 2001 mark the successful development of a more simplified and efficient mechanism for gathering data across all CARE Act programs. The collaboration of providers, grantees, HRSA/HAB personnel, and HIV/AIDS staff from other Federal agencies has produced a data-gathering tool with several advantages over prior systems. The plural "systems" is the operative word. Three distinct data-gathering protocols had been used by CARE Act grantees through the 2001 reporting period: one for Titles I and II, a second for Title III, and another for Title IV. The existence of three unique approaches to data reporting in programs managed by a single entity lies in the history of the CARE Act. From 1991—the first year in which CARE Act funds were appropriated—until 1998, three different organizations within the U.S. Department of Health and Human Services (HHS) administered particular programs, each with its own management system. The consolidation of management for all CARE Act programs in a new HIV/AIDS Bureau (HAB) in 1998 presented opportunities to increase collaboration across programs, decrease administrative costs, and present a more unified front for HIV/AIDS services. HAB set out immediately to streamline management practices in many areas, and data gathering was no exception.

The CARE Act Data Report is divided into eight sections:

1. Service Provider Information

2. Client Information

3. Service Information

4. HIV Counseling and Testing Information

5. Medical Information

6. Demographic Tables/Title-specific Data for Titles III and IV

7. ADAP/APA Information, and

8. Health Insurance Program Information.

Each section is then divided into various parts to be answered by the appropriate Title program. Not all Title programs are required to respond to each section; some parts are specific to Titles III and IV. Only programs administering an AIDS Drug Assistance Program (ADAP), an AIDS Pharmaceutical Assistance (APA), or Health Insurance Program (HIP) complete Sections 7 and 8.

The new data reporting system has advantages and disadvantages in the minds of users, in this case HAB's partners—grantees and providers delivering services to individuals living with HIV disease. Organizations funded through more than one CARE Act Title recognize distinct advantages, primarily a much lighter administrative burden. For example:

1. Users now comply with only one data-gathering mechanism, instead of three.

2. Providers no longer have to devote large amounts of staff time to mastering several systems.

3. Providers now comply with only one set of regulations and requirements.

4. Grantees and providers can use a free MS-Access-based software (CAREWare), developed by HAB, to collect and report data.

5. HAB will provide online data entry (via the Internet) of the annual CADR.

One of the most important and critical benefits of the new system is a greatly enhanced ability for HAB to supply better and more comprehensive information to advocates, the Administration, and the legislative branch regarding the CARE Act. By continually improving information on how the CARE Act is used (for whom and for what purposes), the Bureau is in a better position to address the legitimate concerns of those representing a broad spectrum of interests, from legislators and their staff members to health planners and policymakers. Ultimately, this will positively affect not only the viability of the CARE Act, its grantees, and providers, but also the health status of individuals who rely on CARE Act services.

History and Development of the CADR  TOP

In 1997, HRSA/HAB developed a HAB workgroup to plan the development of a uniform reporting system throughout the Bureau. The workgroup consisted of staff from the Office of Science and Epidemiology (OSE) as well as data contacts in all other divisions within HAB. Over the next four years, HAB developed several versions of the CARE Act Data Report and instructions. Each version went through a Bureau-wide review process, and HAB also conducted reviews by grantees, service providers, AIDS national constituency groups, and other Federal agencies by using web surveys and conference calls. HAB received feedback from reviewers on individual questions, question instructions, definitions of terms used, timeframes for implementation of the new report form, and the amount of resources necessary to initiate reporting.

In the Fall of 2000, the report form and accompanying instructions were ready for pilot testing. The purposes of the pilot testing were to:

1. Allow users (i.e., grantees and service providers) to provide feedback to HAB prior to the OMB review process

2. Enhance participation in producing the final products of the new reporting system;

3. Work out the bugs in the field, and

4. Determine the capability of grantees and service providers to collect the data necessary for inclusion in the new report.

Twelve States volunteered to participate in the pilot testing. They in turn invited grantees and service providers across their Title programs to participate in site visits that would be conducted by a three-member team from HAB. The team conducted interviews (in the State capitals and EMAs) with grantees and service providers from all Title programs within the State. Interviews focused on:

• Background information on grantees' and service providers' data collection capabilities
• Extent to which service providers could collect client-level data in order to complete the aggregate report
• Software used at individual sites
• Methods used in data collection
• Methods used to monitor accuracy of the data collected
• Contents of the new report form and instructions, and
• Data analysis.

Upon completion of the pilot testing, all recommendations were incorporated into a final version of the CARE Act Data Report and Instructions, which was submitted to OMB for review and approval. This version of the CADR received approval in August 2001 and was immediately distributed to all CARE Act grantees for implementation in January 2002. HAB staff spent the Fall of 2001 training CARE Act grantees on the new report form.

Grantee and Provider Responsibilities  TOP

Grantee Responsibilities

All CARE Act grantees are responsible for training their service providers and any other reporting entities on collecting and reporting data for the annual CADR. Grantees are also responsible for:

• Ensuring that contract providers annually complete the CADR
• Reviewing their providers' reports to ensure accuracy prior to submitting them to HAB
• Submitting completed CADRs to HAB by March 15 (starting in 2003), and
• Cooperating in the verification of their data following submission. Grantees who submit all their data via the Web are exempt from the data verification process.

Provider Responsibilities

All service providers funded by CARE Act grantees are responsible for:

• Establishing and maintaining a client-level data collection system that permits the compilation of all data needed to complete the CADR
• Collecting complete data from all subcontractors, and
• Submitting a completed CADR to their grantee of record by a locally-established due date to permit review by the grantee.

CADR Data Submission Process

The CARE Act Data Report eliminates Title-specific reporting. Therefore, service providers should complete one annual report that includes all CARE Act services provided and all clients served during the calendar year, regardless of which Title funded the services. The provider then submits a copy of the completed report to its grantee(s) of record. The grantee of record then submits the same report, with a cover page, to the HAB data contractor. Each Title I and II grantee compiles its providers' reports, completes a cover page, attaches it to the reports, and submits the reports to HAB's data contractor. Thus, service providers that are multi-funded have concurrent reporting responsibilities but a single reporting tool.

All grantees have multiple options for submitting data for the CARE Act Data Report to HAB's data contractor, who will sort out duplicate reports so that they are not entered into the database more than once. Grantees can choose to enter their data via one of the following:

1. A Web-based data entry system with built-in data edit checks, assuring that the data will be internally consistent

2. Hard copies mailed directly to HAB's data contractor, and

3. Electronic data submission, using the RW CAREWare export file format.

Title IV grantees that have a centralized project management system with unduplication of clients should continue to fill out a single data report form along with the cover page, as they have done in the past. Title IV grantees with multiple reporting entities must have each reporting entity complete a separate data report form (i.e., each reporting entity becomes in essence a "service provider"). Each service provider counts all clients served and reports only on the services it provided to these clients. The Title IV grantee then compiles the CARE Act Data Report forms, completes a single cover page, and submits the data to HAB's data contractor.

Data verification, by the HAB data contractor, will be conducted once the CARE Act Data Reports have been submitted for a given year. Providers that are funded by only one Title will be contacted, by their Title grantee of record, to resolve any errors encountered by the data verification process. For those providers with multiple funding sources, the data contractor will contact the Title grantee responsible (as the closest source of the information) to resolve any errors.

The following are examples of possible cases in which a provider or grantee will be contacted to verify data information:

• Example 1. A Title IV community-based organization also receives funding from Title I and Title II. In this case, the Title IV grantee will be contacted for error corrections during data verification.
• Example 2. A Title III grantee also receives funding from Title I. The Title III grantee will be contacted for error corrections during data verification.
• Example 3. A community-based HIV service organization receives funding from Title I and Title II. Using a random choice design, either the Title I or Title II grantee will be contacted for error corrections during data verification. This scenario effectively reduces the burden of data verification by half for both the Title I and II grantees.
• Example 4. A service agency receives funding from HRSA as both a Title III and Title IV grantee. The Title III grantee will be contacted for error corrections during data verification.

Training and Technical Assistance  TOP

Office of Science and Epidemiology (OSE) staff (within HAB) are responsible for training CARE Act grantees on the implementation and use of the CARE Act Data Report, and in turn, grantees are responsible for training their service providers. OSE makes available the CADR and detailed instructions; these are available on the HAB website.

OSE also provides the software package CAREWare (for free) for use in collecting client- level data necessary for completion of the CADR. Use of CAREWare is not required. However, grantees and service providers can use CAREWare to generate their annual report for submission to HAB. OSE staff are responsible for offering CAREWare training on an as-needed basis.

HAB also provides the following training and technical assistance:

• A data-related technical assistance Website
• A telephone helpline for assistance with completing the annual report
• A CAREWare telephone helpline for assistance in implementing the use of CAREWare at a grantee's or service provider's site, and
• Upon request, on-site data-related technical assistance from HAB's data contractor.