NEJM: Data should be put to public health work
It is time to affirm that there is a public health duty to use surveillance data in new ways, for the sake of both populations and individuals, according to the authors of a perspective paper published Aug. 24 in the New England Journal of Medicine.
According to authors Amy Fairchild, PhD, MPH, and Ronald Bayer, PhD, both from the Center for the History and Ethics of Public Health at the department of sociomedical sciences at the Mailman School of Public Health, Columbia University in New York City, there is evidence that antiretroviral therapy for people with HIV can have a profound impact at the population level by reducing viral loads and hence infectivity.
“As a consequence, important ethical and operational questions about the relationship between clinical medicine and public health are surfacing. Perhaps the most fundamental of these centers on the uses of surveillance,” they wrote.
According to the authors, all states but one require laboratory-based reporting of CD4 cell counts to health departments, and all but four require reporting of viral loads. However, only Louisiana has begun to push information back out in ways to affect care.
The state created the Louisiana Public Health Information Exchange (LaPHIE) which determined whether a patient was an HIV-exposed infant or someone who tested positive for HIV but either was not informed of the results or hasn’t received a CD4 test within the past 12 months.
At a March Centers for Disease Control and Prevention (CDC) consultation, Louisiana State University presented data showing that a point-of-care message via LaPHIE, which triggers a conversation with the patient, resulted in approximately 75 percent of HIV-positive people returning to care during the pilot phase, Fairchild and Bayer wrote.
“To build an HIV registry, [Louisiana Office of HIV Surveillance] staff had become skilled at mining clinical records and other data registries,” the perspective stated. “But though they regarded no data source as off-limits, officials resisted bringing those sensitive data together into a single, identified HIV record. Stigma remained a major reason for opposing measures that might put confidentiality at risk.
“At this point in the human immunodeficiency virus (HIV) epidemic … we must ask what is the greater mistake: opening up the registries, potentially giving infected people and clinicians more choice, or leaving walls intact, recognizing that the data are imperfect and that some people don’t want their information shared even with their own healthcare providers?” concluded the authors.
According to authors Amy Fairchild, PhD, MPH, and Ronald Bayer, PhD, both from the Center for the History and Ethics of Public Health at the department of sociomedical sciences at the Mailman School of Public Health, Columbia University in New York City, there is evidence that antiretroviral therapy for people with HIV can have a profound impact at the population level by reducing viral loads and hence infectivity.
“As a consequence, important ethical and operational questions about the relationship between clinical medicine and public health are surfacing. Perhaps the most fundamental of these centers on the uses of surveillance,” they wrote.
According to the authors, all states but one require laboratory-based reporting of CD4 cell counts to health departments, and all but four require reporting of viral loads. However, only Louisiana has begun to push information back out in ways to affect care.
The state created the Louisiana Public Health Information Exchange (LaPHIE) which determined whether a patient was an HIV-exposed infant or someone who tested positive for HIV but either was not informed of the results or hasn’t received a CD4 test within the past 12 months.
At a March Centers for Disease Control and Prevention (CDC) consultation, Louisiana State University presented data showing that a point-of-care message via LaPHIE, which triggers a conversation with the patient, resulted in approximately 75 percent of HIV-positive people returning to care during the pilot phase, Fairchild and Bayer wrote.
“To build an HIV registry, [Louisiana Office of HIV Surveillance] staff had become skilled at mining clinical records and other data registries,” the perspective stated. “But though they regarded no data source as off-limits, officials resisted bringing those sensitive data together into a single, identified HIV record. Stigma remained a major reason for opposing measures that might put confidentiality at risk.
“At this point in the human immunodeficiency virus (HIV) epidemic … we must ask what is the greater mistake: opening up the registries, potentially giving infected people and clinicians more choice, or leaving walls intact, recognizing that the data are imperfect and that some people don’t want their information shared even with their own healthcare providers?” concluded the authors.