PEMS

No, it has nothing to do with PMS. It stands for Program Evaluation and Monitoring System.

CDC has been working to combat the HIV epidemic for 15 years now, but it's taken a long time for us all to figure out what actually works. At first, a lot of agencies were funded to just go out and talk to groups about HIV and AIDS. As you may recall, Surgeon General C. Everett Koop, who Ronald Reagan appointed to office as an exemplar of what was already referred to by the Christian right as "moral values," surprised everyone by mailing out straightforward, factual information about HIV and AIDS to every household in the U.S. Posters went up on subways and buses, there were toll-free 800 numbers to call, people were trained as community HIV educators and they spoke to school assemblies, church congregations, and the rotary club. The gay community mobilized and organizations sprang up such as Gay Men's Health Crisis in NY and AIDS Action Committee in Boston. They developed outreach programs to bars, bathhouses, and other "scene" settings.

All of this was necessary but, as it turned out, not sufficient. People need accurate information, but for many people, avoiding HIV infection is not just a question of knowledge. People need skills, they may even need power in social situations that they don't have. For example, women don't always have the ability to insist that their partners use condoms nor do they know what the men may be doing that puts both partners at risk. Gay men can also be in abusive or unequal relationships. Some people have addictions, severe material needs, psychological distress or mental illnesses which also affect their ability to avoid risk behaviors. Most important, overarching everything, is the stigma associated with homosexuality, illicit drug use, and HIV itself, which has made it difficult to talk openly and has also driven many people to avoid disclosing information about themselves which is essential if counselors and educators are to work with them effectively. Behaviors which are driven underground, and pursued furtively, are the most difficult to modify.

Over the years, we have developed effective, evidence based methods to help people avoid risk of HIV infection, and to help already infected people avoid transmitting the virus or being reinfected. CDC is using this knowledge to target its funding more effectively and to work with community based organizations providing HIV prevention services to develop and implement interventions that work. A problem is that in order to monitor and evaluate these efforts, and assure that their increasingly limited resources have as much impact as possible, they need to collect information about the programs, their clients, and the outcomes. This presents major challenges for confidentiality and trust. Obviously, if people think an agency is going to report information about them to the federal government, they aren't likely to tell the truth about themselves.

CDC has set up its PEMS system to segregate data agencies need to manage and evaluate their own programs, which includes ways of keeping track of information about their clients which is potentially identifying, from information CDC needs to demonstrate to Congress that the spending is worthwhile (assuming Congress cares), to hold grantees accountable, and to allocate its resources. The question for those of us doing the work is whether we can trust that this information will indeed be inaccesible to the government. As I asked the guy in charge of the program today, I trust you when you say you won't be able to get access to the data, but can you make me believe that Alberto Gonzales won't be able to see it? He said yes, but he's not going to try to prove it to me until Thursday. Meanwhile, I'm still skeptical, as are my colleagues here. We shall see what we shall see.