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.
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 support 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?
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 or configured in order to improve the collection of comprehensive data describing the care experiences of people living with HIV?