On the grid
Can a massive database of personal information help the homeless without violating their privacy?
Published: January 13, 2011
Here in Central Florida, the database is a complex, multi-layered system of permissions that looks different to various users. All agencies can see the “universal data elements” on a client, but may be prohibited from seeing some of the “program-specific data elements” such as health history. Shelters like Coalition for the Homeless of Central Florida, for example, are not able to see if a client has AIDS, because that information has no bearing on how they provide services. With HMIS, it’s possible for two people working at adjoining desks to see the same file differently. “We have really fine control of what you can share in this system,” Remigio says.
According to Sullivan, the system in Central Florida has no link whatsoever to the hundreds of other HMIS databases across the country. “This is a local tool,” he says. “There’s no big mainframe in Washington.”
The homeless themselves have the right to view or modify their files, and they can refuse to give out their information. But that practically never happens, say Jackson and Remigio, especially considering that the agencies themselves require some basic information, regardless of HMIS standards. Another possible reason for the lack of resistance is that express consent is not required to input the information. Rather, HUD allows for inferred consent as long as a privacy notice is posted within sight in an agency’s intake area. This notice need not refer to HMIS by name, nor describe the nature of the database, but only that data is being collected and may be shared and/or used. “We assume that you agree to allow us to collect information and to use or disclose it as described in this notice,” reads the policy of the Homeless Services Network of Central Florida.
That revelation wasn’t extended to Chris, a 53-year-old homeless man from Trinidad who declined to give his last name to a reporter when interviewed at the Food Not Bombs weekly meal. While finishing his second over-ripe banana, he says that in his two years of homelessness in Orlando, he has never been arrested nor spent one night in a shelter. “I have no record at all,” he says assuredly.
When asked if he attended a large event last month at the old Amway Arena, he says yes – he remembers going mostly for the free food.
When informed that, in all likelihood, he now had an electronic record, he is silent for a couple of seconds. “They didn’t say I’d be in a database,” he says. “They just handed me a form and said to fill it out.”
Though HMIS was primarily conceived to collect and share information with the federal government, today’s HMIS systems are actually robust case-management programs, allowing users to scan documents into files, create “care plans” for clients and (most compellingly) share client profiles with other agencies. This is one reason the system has won some very devoted supporters, not least among them the area’s Housing Opportunities for Persons with AIDS (HOPWA) agencies.
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