Health officials urged to release HIV registry data to providers

The public health establishment is beginning to recognize the value of using state HIV registries to bring HIV-positive patients under the care of a physician, or return them to care after they've dropped out. But, because of longstanding privacy concerns, only one state, Louisiana, has actually begun to pilot the use of an HIV registry in patient care, according to a paper in the New England Journal Medicine.

All states but one now require laboratories to report CD4 cell counts to state health departments, and all but four states also require reporting of viral loads. This data is used for epidemiological research, not in patient care. Yet nationwide, the commentary points out, "approximately 25 percent of people with HIV infection don't know their HIV status. Moreover, of those who are aware that they're infected, 50 percent are not receiving regular HIV care."

The main reason for not providing the data to physicians is that public health officials fear compromising patient privacy. Some patients don't want their doctors to know they're HIV positive. And, whether patients are aware of their condition or not, the state officials in charge of building the registries are afraid they might notify the wrong patients by mistake, the authors point out.

The increasing effectiveness of antiretroviral drugs, however, has strengthened the argument for releasing the data to caregivers and patients. It might it be unethical to withhold this information if it could help patients, and treating additional HIV-positive patients could reduce the spread of the disease, proponents contend.

The federal Centers for Disease Control has supported release of the HIV data since 2007. Last March, it held a conference on the topic. Louisiana officials presented information on their program at the conference.

Louisiana's Office of Public Health has created the Louisiana Public Health Information Exchange (LaPHIE) to increase the number of patients with HIV and sexually transmitted diseases under treatment. The health department is piloting the release of HIV data in Louisiana's state hospital system.

When an authorized medical provider opens a patient's electronic medical record, LaPHIE alerts the caregiver if the patient is an HIV-exposed infant, or someone who has tested positive for HIV but was not informed of the results or hasn't received a CD4 test in the previous 12 months. A study of the program showed that that these alerts triggered phone calls to patients that resulted in 75 percent of HIV-positive patients returning to their doctors' care.

To learn more:
- read the New England Journal of Medicine commentary 

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