The White House Office of National AIDS Policy has requested that the Institute of Medicine (IOM) convene a committee of experts to assess available public and private data systems that capture information about HIV care to investigate ways to maximize their usefulness and recommend approaches for supplementing current data sources and to identify and provide recommendations for the most critical data and indicators to gauge the impact of the National HIV/AIDS Strategy and the Patient Protection and Affordable Care Act in improving HIV/AIDS care.
The committee will address the following questions in its first consensus report:
1. What are the best sources of data (and which data elements should be used) from public and private HIV care databases to assess core indicators related to continuous care and access to supportive services, such as housing, for people living with HIV?
a. What data collection items need to be revised or reconsidered in existing databases of care and services provided to people living with HIV and in demographic data about populations receiving these services? Are there proposed changes that can provide necessary data without adding additional burden to data collection?
b. What is the difference between claims data and clinical data found in medical records and do these differences encompass gaps in measures for HIV care?
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?
ing to HIV care, as well as the possibilities and challenges of combining data from different data systems to estimate the indicators identified by the committee.
The current report, which responds to the remaining portion of the committee’s charge, addresses how to monitor the changes in health care coverage, service utilization, and quality of care for people with HIV that are anticipated under the ACA. Almost 30 percent of people with HIV in the United States have no source of health care coverage and only 17