and services provided to them. Box 3-1 summarizes the data systems and collection activities identified by the committee for further consideration.

Requests for information were sent to individuals familiar with 29 of the data systems and agencies. Several other potential sources of data—accountable care organizations, the Enhanced Comprehensive HIV Prevention Planning (ECHPP) Project, and the 12 Cities Project—were still being implemented at the time of the inquiry.1 Information was obtained from 27 of the data systems or agencies contacted. The committee was unable to obtain information from Aetna and the HMO (Health Maintenance Organization) Research Network. The Substance Abuse and Mental Health Services Administration provided information on several data collection activities. In total, the committee reviewed information on 31 different data collection activities. The committee requested background information (e.g., the population for which data are collected; the method and frequency of data collection; whether the data are public, private, or proprietary) and details about the data elements captured by each of the data systems in the areas of HIV testing and linkage to care, clinical care, access to care, treatment and adherence, financial security, demographics, risk behavior assessment, and patient experience with care.

The data systems vary with respect to their design; the size, nature, and representativeness of population; the source and type of data; and the specific data elements included. The committee took account of these factors when considering which data systems, individually and in aggregate, would be most helpful for estimating the indicators presented in Chapter 2 and for assessing the impact of the NHAS and the ACA in improving HIV care in the United States.

The committee identified 12 data systems it considered to be most useful for tracking the impact of the NHAS and the ACA on HIV care in the United States:

  • National HIV Surveillance System
  • Medical Monitoring Project
  • Ryan White Services Report
  • Ryan White AIDS Drug Assistance Program Reports
  • Medicaid Statistical Information System
  • Chronic Condition Data Warehouse
  • North American AIDS Cohort Collaboration on Research and Design
  • CFAR Network of Integrated Clinical Systems
  • HIV Research Network
  • Clinical Case Registry: HIV


1Complete descriptions of ECHPP and the 12 Cities Project are provided later in this chapter.

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