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Data Collection Tools

Rural HIV/AIDS programs may need to collect different types of data. These could include:

  • Health outcomes data about HIV diagnoses, prevalence, incidence, viral load and transmission rate; medication adherence; and disease progression, which could be obtained from clinics, emergency rooms, and corrections facilities
  • Social services data to understand how people living with HIV/AIDS are accessing and utilizing support services
  • Clinical data to measure whether patients are remaining in care and attending scheduled appointments, plus linkages to other services
  • Law enforcement data, which may include information about high-risk behaviors like injection drug use or transactional sex
  • Program data about HIV/AIDS prevention activities

The evaluation may be able to utilize existing data from these sources. Collaborations between organizations, providers, healthcare systems, and law enforcement can help programs obtain data they might not otherwise be able to access.

Some funders may provide data collection tools for grantees to use in reporting their data. For example, community-based organizations who are grantees of the Centers for Disease Control and Prevention (CDC) must use an existing evaluation tool to collect information about their clients and their program. Ryan White CARE Act grantees must complete Program Services Reports (called RSRs), which provide the HIV/AIDS Bureau with information about the organization, the services they provide, their care providers, and their clients. The AIDS Drug Assistance Program (ADAP) and Dental Services have their own data-reporting requirements and templates.

When possible, validated measures should be used during evaluation. Using these measures will make it easier to compare the results of a new evaluation to other programs that may be using the same curriculum or model. However, not every validated measures is a good fit for every program's evaluation efforts. A few examples of validated data collection tools include:

  • Adherence to HIV care, including medication adherence and other clinical components of disease management, can be measured using the HIV-Intention Measure. It is a self-report survey with 14 questions about knowledge and intentions.
  • Health-related quality of life can be measured using several different surveys and survey components (scales). Health-related quality of life for people living with HIV/AIDS can include issues like medication side effects, sleep disturbances, or problems in family or social relationships resulting from the person's HIV status.
  • Programs interested in evaluating routine screening in healthcare settings can use two questionnaires designed by the CDC to obtain patient perspectives and provider experiences with HIV screening tests in a clinical environment. The questionnaires cover implementation issues, patient satisfaction, and concerns or barriers to obtaining testing. The patient questionnaire is also available in Spanish.

Several important reporting tools for data are also listed below.

  • Ryan White CAREWare 6 is the software tool Ryan White grantees are required to use when completing Ryan White Program Service Reports (RSRs) and reports for the AIDS Drug Assistance Program (ADAP) and Dental Services.
  • The Enhanced HIV/AIDS Reporting System (eHARS) is a surveillance system developed by the CDC to assist health departments with data collection and management. It can be used to analyze and report testing data, which may be useful for evaluation purposes.

Information on how to Collect and Analyze Quantitative and Qualitative Datacan be found in the Rural Community Health Toolkit.

Resources to Learn More

Evaluating HIV/AIDS Prevention Projects: A Manual for Nongovernmental Organizations
Manual written for nongovernmental and community-based organizations to guide the evaluation, planning, and implementation process for HIV/AIDS prevention projects. Discusses quantitative and qualitative methodology which may be useful for programs interested in designing their own data collection tools.
Author(s): Bertrand, J. & Solis, M.
Organization(s): MEASURE Evaluation
Date: 2004

Center for Quality Improvement and Innovation
Collaborative providing on-site and off-site technical assistance and extensive quality improvement resources for Ryan White grantees. The goal of the organization is to help busy care providers implement quality improvement programs that will lead to better client health outcomes.
Organization(s): TARGET Center

Outcomes Evaluation Technical Assistance Guide
Written for Title I and Title II (now Part A and Part B) Ryan White CARE Act grantees. Contains an extensive section on issues and challenges in outcomes evaluation, including problems with data collection, data management, stakeholder buy-in and participation, complex systems of care, and sampling methods.
Organization(s): Health Resources and Services Administration HIV/AIDS Bureau
Date: 2001

Ryan White Services Report (RSR)
Provides technical assistance resources for organizations and grantees preparing their annual RSRs. Includes information about timelines, a forum, frequently asked questions, training materials, and technical guidance to create and manage data files.
Organization(s): TARGET Center: Tools for the Ryan White Community