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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).

There are also a number of barriers to collecting HIV/AIDS data. 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.

Resources to Learn More

The Feasibility of Using Electronic Health Records (EHRs) and Other Electronic Health Data for Research on Small Populations
This report details effective methods in utilizing EHR data for research and programming for small populations in the U.S., with a focus on rural populations. Information on types of EHR data and best methods for collecting this data are included.
Author(s): Devers, K., Gray, B., Ramos, C., Shah, A., Blavin, F., & Waidmann, T.
Organization(s): The Urban Institute
Date: 9/2013

HIV/AIDS in Rural America: Prevalence and Service Availability
Report that explores the prevalence of HIV/AIDS in rural communities in the U.S. and compares Ryan White providers and services in urban versus rural areas of the country. The report also highlights promising methods of collecting data in rural communities through publically available surveillance data.
Author(s): Vyavaharkar, M., Glover, S., Leonhirth, D., & Probst, J.
Organization(s): South Caroline Rural Health Research Center
Date: 1/2013

National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) Atlas
Provides up-to-date data on HIV/AIDS, including metrics such as HIV diagnoses, number of persons living with HIV stage 3 (AIDS), and HIV deaths. This data is provided through an interactive platform that allows the user to download and export the data, which can supplement data collection efforts for program planning.
Organization(s): The Centers for Disease Control and Prevention