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Rural Health Information Hub

Data Collection Tools

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

  • Health outcomes data about HIV diagnosis, prevalence, incidence, viral load, and transmission rate
  • Social services data to understand how people living with HIV/AIDS are accessing and utilizing support services
  • Clinical data, such as medication adherence, disease progression, continuity of care, attending scheduled appointments, and linkages to 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 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 measure 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, which 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.
  • America's HIV Epidemic Analysis Dashboard (AHEAD) provides visual data used to track progress towards ending the HIV epidemic in America in order to inform decision-making at the local and national level.

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

Resources to Learn More

Supporting Increased HIV Prevention, Testing, Training, and Data Infrastructure with Tribal Partners and Communities
Describes the activities of the Oklahoma Area Tribal Epidemiology Center, an organization partnering with tribal communities offering public health services in epidemiology, data collection and analysis, health promotion and disease prevention. Provides training to healthcare providers in PrEP prescribing practices and supports increased access to HIV testing and self-testing kits in Indian country.
Author(s): Knight, C.
Organization(s):, Oklahoma Area Tribal Epidemiology Center
Date: 11/2020

Center for Quality Improvement and Innovation
Describes a quality improvement (QI) technical assistance and training center of expert consultants for Ryan White grantees to help healthcare providers implement QI programs and activities leading to better client health outcomes. Includes online clinical quality management resources and tutorials.
Organization(s): TargetHIV, HRSA's Ryan White HIV/AIDS Program (RWHAP)

Ryan White Services Report (RSR)
Provides technical assistance, resources, and a forum for organizations and grantees preparing their annual RSRs. Includes frequently asked questions, training materials, and technical guidance to create and manage data files.
Organization(s): TargetHIV, HRSA's Ryan White HIV/AIDS Program (RWHAP)