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U.S. News

Federal HIV Privacy Concerns

January 25, 2006

A new Web-based HIV data system that CDC is requiring directly funded groups to use is burdensome and invasive, some AIDS groups said recently.

In order to report how they are fulfilling CDC contracts, 65 local or state health departments and about 130 AIDS organizations are required to use CDC's Program Evaluation and Monitoring System (PEMS). For example, a CDC-funded HIV prevention services provider would use PEMS to interview clients, who are assigned unique identifiers. As clients are counseled over time, their answers to questions about sexual behavior and drug use would be input to PEMS.

The aggregate data, held on a secure computer, will allow CDC to assess, among other things, an agency's performance and the effectiveness of particular HIV prevention methods. No personally identifying data will be collected, said CDC.

"We can better monitor clients in an agency over time and look at behavioral changes over time, but we can also look at service utilization outcomes," said Dr. Craig Thomas, CDC's PEMS team leader. "Because of the standards, we can make comparisons by agency type, we can make comparisons among target populations served by program type, we can look at our counseling and testing programs and identify those that are performing at a high level."

"It helps identify poor performers," Thomas acknowledged. "However, we would go in and try to help things, build things back up. ... If they still aren't performing after several attempts, they may have to defund."

"PEMS prioritizes invasive data collection above the actual work of HIV prevention itself, threatening to turn educators into interrogators and overwhelm already understaffed HIV prevention agencies with paperwork," Julie Davids, executive director of the Community HIV/AIDS Mobilization Project, said in a statement.

In addition, 12 of the 65 health departments, including New York, have their own reporting systems, and PEMS might duplicate their efforts, advocates said.

"We are working very closely with New York and other states so we can ensure that we don't have our community-based organizations entering data into two systems," said Thomas.

Back to other news for January 25, 2006

Adapted from:
Gay City News (New York City)
01.19.06; Duncan Osborne

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This article was provided by CDC National Prevention Information Network. It is a part of the publication CDC HIV/Hepatitis/STD/TB Prevention News Update.
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