February 2, 2007
SURVEY SAYS...
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Surveys can be fun...or dangerous |
In this media-savvy age, we all know that the results of any poll are greatly determined by how the questions are asked. It seems that New York City's Department of Health (DOH) may be trying to prejudice the questions of an annual high-stakes survey being conducted by the Centers for Disease Control and Prevention (CDC). Why do such a thing? Perhaps in order to promote Health Commissioner Thomas Frieden's controversial plans for controlling HIV/AIDS in New York.
Through something known as the Medical Monitoring Project (MMP), the CDC is conducting a massive public health surveillance project about people with HIV/AIDS. The CDC is partnering with 26 sites across the country, consisting of states and cities, to administer a 50-minute questionnaire to people who have HIV. The survey allows the government agency to assess PWA behaviors, clinical outcomes, quality of care and prevention needs. In turn, the CDC can evaluate current services and direct future resources.
Sounds great, right? Here's the problem. The DOH has been tasked with dispersing the survey to 2,000 New Yorkers, and part of its job is to make the questions relevant to the needs of New York's PWA community. In order to involve the local AIDS community in this process, the DOH asked the Consumer Committee of New York's Ryan White Planning Council to function as a Community Advisory Board (CAB) and sign off on the relevance of the survey questions. Last week, Lisa Buckley, the DOH's MMP Project Coordinator, introduced seven new topics, or groups of questions, to be reviewed. Questions in two of the topics read as if they came straight from Frieden's pen. They probe for, and even guide respondents to, answers about the need for greater government monitoring of individual patients' treatment and aggressive HIV testing.
One question asks, "If you had not gone to the doctor for HIV care (in six months/one year) would it make you uncomfortable if the NYC Department of Health privately contacted you to help you get back into medical care?"
Another asks, "Do you agree with the following? A person should be allowed to verbally agree to an HIV test; a separate written consent for HIV testing should not be required." (See below for a peek at all the DOH's proposed supplemental questions.)
Faced with these apparently benevolent questionnaire set-ups, PWAs may not realize the greater implications. Increased government oversight of medical information can lead to nightmarish invasion-of-privacy scenarios; not getting written consent can open a Pandora's box of stigma and discrimination that newly diagnosed folks are ill-equipped to handle.
Chris Murrill, DOH's MMP Primary Investigator, told AIDS Issue Update that the newly tweaked questions are not orders from above. "The topic [of consent forms and monitoring of patients] is a discussion regardless," He explains. "The topic is something that would be nice to include in the questionnaire to get some data, not because the commissioner has introduced it as a potential approach."
Housing Works' NYC Public Policy Director terri smith-caronia concedes that the CDC might have had a hand in the "consent form" question, because after all, they've been pushing the issue. But she counters, "The DOH coming to your door? That is, hands down, Frieden's agenda."
When asked if the CAB can reject the questions outright so as not to include them in the survey, Murrill responded that the priority is "obtaining input and if [the CAB says question are] not appropriate or wrong-themed, then we would take that seriously."
If you think the new MMP questions and Frieden's HIV/AIDS agenda are eerily similar, you can participate in the public-comment session during the next MMP CAB meeting on Wednesday, February 14, from 1PM to 3PM at the Ryan-Chelsea Health Center, 645 Tenth Avenue at 45 th Street in Manhattan. "This is when we're going to start following the bouncing ball," smith-caronia says.