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ONAP Commissions Institute of Medicine to Examine Data Gaps in Monitoring Access and Quality of HIV Care

The Office of National AIDS Policy is partnering with the Institute of Medicine to help improve access to insurance as well as the quality of care for those living with HIV.

This time last year, the Office of National AIDS Policy (ONAP) announced a contract with the Institute of Medicine (IOM) to conduct a series of policy analyses to help inform the National HIV/AIDS Strategy.  The first of three reports from this project was released two weeks ago and presents important information for policymakers and members of the public working to expand HIV testing and screening in order to identify and link to care all people living with HIV ( ).  The second report on policy issues surrounding access to care is forthcoming, while the workshop for the final policy analysis on increasing the HIV provider workforce took place last week ( ).  Each of these analyses will provide critical information that will help support the implementation efforts for the strategy.

ONAP has recently partnered with the IOM on a new initiative. The implementation of the Affordable Care Act (ACA) and the development of the National HIV/AIDS Strategy create a unique opportunity to dramatically improve access to insurance coverage and the quality of care and clinical outcomes achieved by people living with HIV.  Various entities (Federal, state, local, private) collect data on people living with HIV related to financial status, demographics, insurance coverage, and use of health services, but these activities are not well coordinated.  As a consequence, there are gaps in our understanding of successful approaches and also barriers to ensuring that all people living with HIV receive the highest quality care.  As we work toward full implementation of the ACA in 2014, it will be useful to establish baseline measures and consider monitoring strategies to ensure that people living with HIV are receiving high quality, clinically necessary services designed to achieve optimal clinical outcomes. 

Over the next two years, IOM will convene a Study Committee to consider questions such as:

  • What are the best sources of data (and which core data elements should be standardized) across public and private HIV care databases that track continuous care (and related services such as housing) for people living with HIV?
  • How do claims data and clinical data found in medical records differ?  Do these differences encompass gaps in measures for HIV care? 
  • How can Federal agencies efficiently analyze data that are already being collected in order to improve HIV care quality?
  • What models or best practices in data system integration can be gleaned from Federal agencies or private industry to make existing data systems and core indicators interoperable?

The Committee will provide recommendations based upon these questions via a published report toward the end of calendar year 2011.

Another important and related activity that we are asking IOM to tackle is to investigate and provide suggestions on how to obtain meaningful national level estimates of access to care and services utilization by people living with HIV.  The Committee will examine issues such as:

  • How do we obtain national estimates that characterize the health status of people living HIV in public and private settings?
  • How can we obtain data from a nationally representative sample of HIV-positive individuals in the United States to establish a baseline for health insurance coverage and health care access status from which to measure improvements?  If this is not readily feasible, are there other alternatives to a nationally representative sample that can provide useful data for informing national policies?

IOM will prepare a second report that will be released near the end of the second year of the project that provides recommendations of how to best obtain these national data. 

We believe that this new project will significantly support our collective efforts to implement and effectively measure our progress toward achieving the established metrics in the National HIV/AIDS Strategy and will support broader efforts to integrate people living with HIV in the implementation of the ACA.

Jeffrey S. Crowley is the Director of the Office of National AIDS Policy
Gregorio Millett is the Senior Policy Advisor in the Office of National AIDS Policy