2. What similar data collection or standardization efforts are currently under way by public agencies or private industry that should be tapped?

3. How do we regularly obtain data (core indicators) that capture the care experiences of people living with HIV without substantial new investments?

4. What situations may impose barriers to the collection of core indicators?

a. What policies, reimbursement issues or reporting issues need to be addressed to collect necessary data?

b. How can data be collected in a way that will not significantly increase provider burden?

5. How can federal agencies efficiently analyze care indicators and disseminate data to improve HIV care quality?

6. What models or best practices in data system integration can be gleaned from public agencies or private industry to make existing data systems and core indicators interoperable?

a. Which among these models or combination of models would be most cost effective?

7. How should health information technology (including electronic medical records) be utilized and configured in order to improve the collection of comprehensive data describing the care experiences of people living with HIV?

The Committee to Review Data Systems for Monitoring HIV Care was formed to carry out this study. The 17-member committee comprises experts in clinical HIV care, mental health, health services research, private health insurance, health policy, housing policy, the Ryan White HIV/AIDS Program, biostatistics, epidemiology, health disparities, and biomedical informatics (see Appendix A, Biographical Sketches of Committee Members).

This is the first of two reports to be prepared by this committee. 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/AIDS (PLWHA) 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.


The number of PLWHA in the United States is increasing every year in large part due to the availability of effective antiretroviral therapy (ART),

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