A new monitoring system for federally funded HIV-prevention programs is creating brouhaha among HIV/AIDS organizations.

The Community HIV/AIDS Mobilization Project (CHAMP), a New York based national human rights organization, is notifying the AIDS community about concerns with a massive and unprecedented set of new surveillance requirements being established by the Centers for Disease Control and Prevention (CDC). CHAMP is warning that the CDC’s new Program Evaluation and Monitoring System (PEMS) risks program effectiveness and participant privacy.

PEMS is a secure Web-based software application created by the CDC to respond to the need for more accurate and timely data for monitoring HIV-prevention programs. It was developed with extensive input from CDC grantees and other stakeholders, and departs from past program monitoring efforts, which did not yield comparable data across jurisdictions or community-based organizations.

According to the CDC, PEMS will improve their ability to monitor, evaluate and coordinate HIV-prevention programs, and ensure that timely and verifiable data is available for use by both grantees and the CDC.

“The program was created to have a more acute and timely way to monitor HIV-prevention programs,” said Jennifer Ruth, a CDC spokesperson. “Past monitoring programs did not have comparable data across jurisdictions and geographical regions. What PEMS is doing is creating a standard set of questions and variables.”

Some of the questions regarding program monitoring and evaluation that PEMS will help answer include:

• What services are being provided?

• To whom are services being provided?

• What behavioral and service utilization outcomes do clients report?

• To what extent is the program reaching its target population?

• To what extent is the intervention plan being delivered as intended?

• What is the relationship between exposure to services and changes in behavioral outcomes?

While not challenging the goal of PEMS, activists at CHAMP are challenging how the program is obtaining the information to answer those questions.

“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,” said Julie Davids, executive director of CHAMP. “Meanwhile, barely-monitored abstinence-only programs get funding increases, despite no evidence that they prevent HIV and much documentation that they do spread misinformation.”

Many of the current CDC-funded prevention programs emphasize the importance of building rapport with people before entering into intensive discussions of stigmatized topics. CHAMP claims, however, PEMS requires counselors to ask a lengthy list of questions that can be both invasive and time consuming.

“This program is not going to give us the answers we need,” said Sean Barry, CHAMP director of prevention policy. “Data collection that is too hard to do and that conflicts with good and ethical prevention education will not happen in a thorough way.”

Locally, Family Health Centers of San Diego is the only federally-funded HIV-prevention program that would be required to implement PEMS. Bob Lewis, director of HIV services at Family Health Centers, does not share the same concern as CHAMP.

“I think if you are going to accept money to do prevention work, you have to realize – in this political climate – there has to be some accountability,” Lewis said. “Yes, it is different than what we have done in the past, but I am hopeful PEMS will prove to become a valuable tool.”

The Evaluation of Local Interventions (ELI), a program organized by the state government, already monitors San Diego HIV-prevention programs. That program tracks the details of how HIV-prevention programs are being conducted. The biggest difference between ELI and PEMS is that PEMS tracks the outcome of those programs.

“PEMS is a little more complex and a little more sophisticated,” Lewis said.

Barry said CHAMP does not dispute the need for accountability, but feels the PEMS program is too invasive by giving the federal government unprecedented access to personal information. That information, he claims, is not necessary to evaluate the outcome of HIV-prevention programs.

“PEMS will give us neither good monitoring, nor good information on outcomes,” Barry said. “We need to simplify monitoring, and then support real research to track the outcomes of prevention programs. We demand a fundamental rethink of monitoring and evaluation that is shaped by full community involvement, not done on the cheap on the backs of community providers.”

“Perhaps I am being overly optimistic,” he said of the program’s potential. “People are afraid of change,” he said in response to CHAMP’s position. “But the way I see it, change is going to happen, and I do with what I can to deal with the changes.”

Family Health Centers is not PEMS-compliant at this time. The CDC is implementing the program in geographical phases between January and April, starting with the Southeast region of the United States.

Family Health Centers is not the only organization to conduct HIV-prevention programs in San Diego. Counsel of Community Clinics also receives federal funds for its HIV-prevention program, but will not be required to implement PEMS since it has no direct contact with clients. Other organizations will not be required to follow PEMS because they do not receive federal funding.