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Big Brother is Watchin

PWAS

e Vermont Health
Department may soon be
collecting unprecedented

amounts of data from federally
funded HIV prevention pro-
grams. Under pressure from the
CDC, the department will be
requiring all prevention pro-
grams 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 informa-
tion currently collected. Failure
to provide this information will
likely result in loss of federal
funding, currently the only
source for HIV prevention pro-
grams in the state.

The proposed draft ver-
sion of PEMS contains 95
pages of questions and vari-
ables that providers will have to
answer to document their serv-
ices. Agencies are also required
to answer detailed questions
about their organization, their
other funding sources and spe-
cific information on every staff

kletecka

posedly conceal a person’s
identity. However, in small
states like Vermont, it doesn’t
take very many bits of informa-
tion tofigure 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.

0 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 part-

 

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 spe-
cific agency, program or indi-
vidual it chooses, for whatever
reason it chooses.

How many folks will
steer clear of prevention pro-
grams 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 his-
torical concerns regarding the
actions of “government.” Once
the word is out about PEMS, .
years of hard work building
trust and respect for confiden-
tiality will be undermined. In ‘
its -place may well be an HIV
underground where infections

 

member and volunteer.
Additionally, lengthy sets of
questions for each client pro-
gram activity must be reported.
While not every question needs
to be answered for each activi-
ty, there still will be a large
amount of data to report that

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The CDC is also requiring _
sexual partners be i
identified with their own

‘Inn

P.0. Box 118 _ _ _
Beau h , NH 03574 Wlll be time consuming and - - - - ~
603-8E9-e;.9178 especially burdensome on  

-8 - . - - .
1 77 LES B INN (537 2466) 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 pre-
ventionuservices be identified
with a unique identifier. Unique
identifiers are codes created
using some parts of names,
social security numbers, or
other identifying data that sup-

Could this be a first step
towards mandatory
partner notification?

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will flourish. Unfortunately, a
very real possibility if the Big
Brother-like PEMS becomes
official policy. V

ners 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 fol-
low a network of individuals
and all of their interacting HIV
risk behaviors.

Joseph Kress, M.A.

Licensed Clinical Mental Health Counselor
Licensed Alcohol and Drug Counselor

Individual and Couples Counseling
Adults and Ad°1‘=5°€“‘5 Chuck Kletecka is a Vermont
PWA Coalition board member:
For questions ‘or comments,
email him at chuckk@adel—

phia.net.

 

802-334-6301
95 Main Street, Suite 203, Newport, VI‘

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