HIV/AIDS Data Collection

Rural HIV/AIDS programs need access to real-time information. However, data sharing can be challenging in rural areas where there may be more limited access to the internet and high costs associated with implementing and maintaining health information technology such as electronic health records (EHRs). The Center for Disease Control and Prevention's National HIV Surveillance System is the primary source for monitoring HIV trends in the U.S. CDC supports state and local health departments in collecting information. However, the data may lack full representation and accuracy due to barriers to collecting HIV/AIDS data, especially in rural areas.

The Institute of Medicine's 2010 report, Monitoring HIV Care in the United States: Indicators and Data Systems, discussed a number of barriers to collecting HIV/AIDS data. These include barriers related to reimbursement and claims data; reporting; and policies, laws, and regulations that impact the use of data about HIV/AIDS. Rural HIV/AIDS programs may need to consider the use of unique data collection tools and evaluation questions in order to accurately report on populations and program effects in rural areas.

Resources to Learn More

The Feasibility of Using Electronic Health Records (EHRs) and Other Electronic Health Data for Research on Small Populations
Document
Details effective methods in utilizing electronic health record (EHR) data for research on small populations in the U.S. with a focus on rural populations. Identifies types of EHR data, best methods for collecting data, privacy and security conditions, and the feasibility of using data from multiple organizations.
Author(s): Devers, K., Gray, B., Ramos, C., et al.
Organization(s): The Urban Institute
Date: 9/2013

HIV/AIDS in Rural America: Prevalence and Service Availability
Document
Explores the prevalence of HIV/AIDS in rural communities in the U.S. Compares the distribution of Ryan White medical providers and services in urban versus rural areas. Highlights methods of data collection in rural communities through publicly available HIV/AIDS surveillance reports.
Author(s): Vyavaharkar, M., Glover, S., Leonhirth, D., & Probst, J.
Organization(s): South Carolina Rural Health Research Center
Date: 1/2013

National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) Atlas
Website
Offers an interactive platform allowing the user to download and export current data on several diseases including the number of reported cases and change from previous year. For HIV data the metrics cover HIV diagnoses, number of persons living with HIV stage 3 (AIDS), and HIV deaths.
Organization(s): The Centers for Disease Control and Prevention