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The number of people living with HIV/AIDS (PLWHA) in the United States is growing each year largely due both to advances in treatment that allow HIV-infected individuals to live longer and healthier lives and due to a steady number of new HIV infections each year. The U.S. Centers for Disease Control and Prevention (CDC) estimates that there were 1.2 million people living with HIV infection in the United States at the end of 2008, the most recent year for which national prevalence data are available. Each year, approximately 16,000 individuals die from AIDS despite overall improvements in survival, and 50,000 individuals become newly infected with HIV. In 2011, the CDC estimated that about three in four people living with diagnosed HIV infection are linked to care within 3 to 4 months of diagnosis and that only half are retained in ongoing care. In the context of the continuing challenges posed by HIV, the White House Office of National AIDS Policy (ONAP) released a National HIV/AIDS Strategy (NHAS) for the United States in July 2010. The primary goals of the NHAS are to: reduce HIV incidence; increase access to care and optimize health outcomes; and reduce HIV-related health disparities. Monitoring HIV Care in the United States addresses existing gaps in the collection, analysis, and integration of data on the care and treatment experiences of PLWHA. This report identifies critical data and indicators related to continuous HIV care and access to supportive services, assesses the impact of the NHAS and the ACA on improvements in HIV care, and identifies public and private data systems that capture the data needed to estimate these indicators. In addition, this report addresses a series of specific questions related to the collection, analysis, and dissemination of such data. Monitoring HIV Care in the United States is the first of two reports to be prepared by this study. In a forthcoming report, also requested by ONAP, the committee will address the broad question of how to obtain national estimates that characterize the health care of people living with HIV in the United States. The second report will include discussion of challenges and best practices from previous large scale and nationally representative studies of PLWHA as well as other populations.
Data base "is a compilation of information from those studies appearing in the medical and scientific literature, presented at international conferences, and appearing in the press"--Introduction.
In September 2010, the White House Office of National AIDS Policy commissioned an Institute of Medicine (IOM) committee to respond to a two-part statement of task concerning how to monitor care for people with HIV. The IOM convened a committee of 17 members with expertise in HIV clinical care and supportive services, epidemiology, biostatistics, health policy, and other areas to respond to this task. The committee's first report, Monitoring HIV Care in the United States: Indicators and Data Systems, was released in March 2012. The report identified 14 core indicators of clinical HIV care and mental health, substance abuse, and supportive services for use by the Department of Health and Human Services (HHS) to monitor the impact of the National HIV/AIDS Strategy (NHAS) and the Patient Protection and Affordable Care Act (ACA) on improvements in HIV care and identified sources of data to estimate the indicators. The report also addressed a series of questions related to the collection, analysis, and dissemination of data necessary to estimate the indicators. In this second report, Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage, the committee addresses how to obtain national estimates that characterize the health care of people with HIV within the context of the ACA, both before 2014 and after 2014, when key provisions of the ACA will be implemented. This report focuses on how to monitor the anticipated changes in health care coverage, service utilization, and quality of care for people with HIV within the context of the ACA.