insurance plans and their receipt of relevant health care services would provide a fuller picture of the impact of the ACA on health care coverage and utilization for this population. MMP, which tracks private health insurance as a source of health care coverage for study participants, is one source of these data. Although they are proprietary, private health insurer enrollment and claims data could be used for larger-scale analyses. One source of such data is the Ingenix Normative Health Information Database® (NHID). NHID contains de-identified Health Insurance Portability and Accountability Act-compliant claims data from commercial health insurers, self-funded employer group plans, and Medicare Advantage plans. The commercial health insurer data consist of transaction-level claims data for more than 14 million covered lives annually from all 50 states and the District of Columbia. Of all individuals in the database at any time during 1994-2010, 67,929 had a diagnosis of HIV/AIDS. NHID includes claims-level information in the following categories that may be relevant to monitoring care for people with HIV under the ACA: care provided in physician offices or other outpatient ambulatory care settings such as urgent care or Minute-Clinics inpatient hospital stays; care provided at ambulatory centers, hospital clinics, and emergency rooms; self-administered prescription drugs; laboratory, imaging and diagnostic services; and goods or services related to specific episodes of care, such as reimbursed transportation (Dore, 2011).
As discussed in detail in the committee’s first report, combining data from multiple data systems presents a range of analytic and logistical challenges. One challenge is the lack of interoperability among health information technology (IT) systems. Interoperability—the ability of different IT systems and software applications to communicate, exchange, and use information—is not fully possible in the United States at this time due to a lack of infrastructure to support it. For the most part, the various sources of health coverage and care for people with HIV have their own health IT systems with disparate architectures and vocabularies, posing a challenge to the exchange of data across systems (IOM, 2012).
A second challenge is the multiplicity of federal and state privacy laws designed to protect patient health information. The privacy and security of health information is particularly important to people with HIV and their providers. HIV continues to be a stigmatized disease (Sengupta et al., 2011). Besides HIV status, other patient information contained in health IT systems (e.g., information on drug use, sexually transmitted diseases, etc.) may be considered sensitive information and, if released, could potentially be used to discriminate against an individual. The current lack of an