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Big Brother is Watching PWAs
Big Brother is Watching
PWAs
by Chuck Kletecka
The
Vermont Health Department may soon be collecting unprecedented amounts
of data from federally funded HIV prevention programs. Under pressure
from the CDC, the department will be requiring all prevention programs
in the state to use a web-based database called PEMS (Program Evaluation
and Monitoring System) to collect data on their programs. This is a drastic
change in both the amounts and the types information currently collected.
Failure to provide this information will likely result in loss of federal
funding, currently the only source for HIV prevention programs in the
state.
The proposed draft version of PEMS
contains 95 pages of questions and variables that providers will have
to answer to document their services. Agencies are also required to answer
detailed questions about their organization, their other funding sources
and specific information on every staff member and volunteer. Additionally,
lengthy sets of questions for each client program activity must be reported.
While not every question needs to be answered for each activity, there
still will be a large amount of data to report that will be time consuming
and especially burdensome on smaller community based organizations.
More troubling than the administrative
headaches are significant concerns about confidentiality. PEMS has eight
pages of identifying questions about each individual program participant,
including their HIV status and risk behaviors. For the first time CDC
is requiring that each person accessing prevention services be identified
with a unique identifier. Unique identifiers are codes created using some
parts of names, social security numbers, or other identifying data that
supposedly conceal a person's identity. However, in small states like
Vermont, it doesn't take very many bits of information to figure out who
is who. For example, PEMS reports the month and year of birth as well
as the county of residence. That information, along with several letters
of a person's name, would be enough to break the code to identify an individual.
And it gets worse. The CDC is also
requiring sexual partners be identified with their own unique identifier.
The descriptive text in that field reads, "a system-generated unique
key developed for partners of index cases for PCRS." PCRS is Partner
Counseling and Referral Services. Could this be a first step towards mandatory
partner notification? If fully implemented, it would be theoretically
possible to follow a network of individuals and all of their interacting
HIV risk behaviors.
Also troubling is the fact that this
will be a web-based database. All PEMS data will be stored at a central
server with the CDC. How secure will this sensitive information be from
computer hackers and unauthorized use? The CDC will also have direct access
to all the information and will be able to pull-up data on any specific
agency, program or individual it chooses, for whatever reason it chooses.
How many folks will steer clear of prevention
programs because of these very real concerns is anyone's guess. But the
communities most impacted by HIV and those who would benefit most from
competent HIV prevention services have very real and historical concerns
regarding the actions of "government." Once the word is out
about PEMS, years of hard work building trust and respect for confidentiality
will be undermined. In its place may well be an HIV underground where
infections will flourish. Unfortunately, a very real possibility if the
Big Brother-like PEMS becomes official policy.
Chuck Kletecka is a Vermont PWA Coalition board member. For questions or comments, email him at chuckk@adelphia.net