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H H S Department of Health and Human Services
U.S. Department of Health and Human Services
Health Information Technology

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What Issues are Unique to HIV/AIDS Care with Respect to Health IT?

Health IT offers a number of benefits and challenges that are unique to the HIV/AIDS community. These benefits and challenges affect both patients and providers and arise from privacy concerns, reporting requirements, and the complex health care needs of HIV/AIDS patients. Nevertheless, health IT holds great promise for this community.


The protection of the privacy of patients’ medical information is important to all HIV/AIDS patients.  Most HIV/AIDS patients do not want to share information on their medical status and other sensitive topics, such as sexual behavior, mental illness or substance abuse, because the release of this information may lead to stigmatization.  There remain places where HIV stigma still exists, and even where communities and providers feel stigma is limited, pockets of stigma remain.  Fear of being stigmatized may have serious health consequences, as patients who are concerned that their information will not be protected may be hesitant to enter or remain in care.  Thus, it is vital that providers convey to HIV patients that they and their entire organization are committed to securing patient privacy.

You must also ensure that your patients’ medical information is not shared more widely than is necessary under applicable federal and State laws.  The Health Insurance Portability and Accountability Act of 1996 (HIPAA) and its HIPAA Privacy Rule require that appropriate safeguards are in place to protect the privacy of personal health information.  The Privacy Rule sets limits and conditions on how this information can be used and shared. It also sets a Federal baseline, but you should check your State privacy rules, as State rules may be more stringent.


Many State and local public health departments require that providers electronically report HIV/AIDS diagnoses.  Electronic reporting requires that this information is transmitted securely, which makes standards for the exchange of sensitive data (e.g., HIV/AIDS status) and the interoperability of providers with public health surveillance systems necessary.  The TARGET Center Data Academy has several very useful modules to help you learn how to collect, use, and report this information.  Also, the State Reportable Conditions Websites developed by the Council for State and Territorial Epidemiologists (CSTE) provides links to State and territorial health departments for reportable conditions, including HIV/AIDS.

Complex health care needs.

One of the most important benefits of health IT is the ability of EHRs to support the coordination of patients’ multiple health care needs. As HIV has entered the realm of a chronic manageable disease, this has become more important. Patients with HIV/AIDS have complex health care needs, arising from co-infections of Hepatitis C or tuberculosis, opportunistic infections, AIDS-related cancers, substance abuse, behavioral health concerns, and complicated and expensive medication regimens. These complex care needs require the involvement of multiple providers and other members of the health care team.  EHR features, such as referral tracking, clinical messaging, and the sharing of electronic records, can help coordinate patients’ care.

HIV/AIDS disproportionately affects racial and ethnic minorities, many of whom are medically underserved. Health IT can support providers in delivering culturally sensitive, evidence-based care, which will promote receipt of highly active antiviral therapy (HAART) and encourage medication adherence, as noted in a 2004 article entitled Optimizing the Care of Minority Patients with HIV/AIDS . Health IT that incorporates questions, alerts, and other clinical decision support can help providers deliver evidence-based care to all patients, including those of underserved populations. It can also improve racial and ethnic minority populations’ communication with providers and engage them in self-care.

As more effective treatments allow patients to live longer, additional age-related health concerns need to be addressed by the care team.  Gender, also, may add complexity to their treatment, as there are certain precautions necessary for patients who are pregnant or new mothers. EHRs can help ensure that these patients receive necessary screenings, tests, and procedures.  As an example, reminders and prompts can alert clinicians to order an HIV test as part of routine prenatal care screening or during a visit with a patient of a high-risk population.

Related Resources:

HAB HIV Performance Measures – This HRSA webpage provides six sets of HIV performance measures: clinical care, medical case management, oral health, AIDS Drug Assistance Programs, systems-level, and pediatric.

The Need for Electronic Health Records – This newspaper editorial describes the need for advancing e-prescribing and electronic medical records in health care organizations and clinical practice.

Meeting the Needs of Older Adults Living with HIV/AIDS – This presentation discusses Village Care of New York’s efforts to meet the needs of older patients with HIV/AIDS.  Village Care strategies included modifying its services and implementing an EHR system to consolidate clinical and medication information from multiple providers.

HIPAA and Data Sharing – This TARGET Center Data Academy module on data sharing provides comprehensive but understandable information for HIV/AIDS providers to help them comply with HIPAA requirements.

Ensuring Security of High-Risk Information in EHRs – This article addresses privacy and security recommendations for high-risk data, including sensitive data related to HIV/AIDS treatment.  Also discussed are HIV/AIDS reporting requirements and their implications for EHR systems.

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