DSHS wanted patient notes added to secure online server to help in audits; agencies say risk to confidentiality was too great
DAVID TAFFET | Staff Writer taffet@dallasvoice.com
- LEADING THE FIGHT | Raeline Nobles, executive director of AIDS Arms Inc., took the lead in negotiating with DSHS to keep AIDS service organizations from being forced to put confidential client information on an online server.
Local AIDS agencies have prevailed over a Department of State Health Services mandate to post all confidential client notes on an Internet database.
The agencies began battling the mandate after state officials claimed that ARIES, the new database, would be secure but could not provide a list of who would have access to the system to the agencies.
“That hit me like a brick,” said Don Maison, executive director of AIDS Services Dallas.
He said immigration status, incidents of domestic violence and other personal information would all become public. He sent his staff for training on the system but instructed agency employees not to enter any information.
Bret Camp, associate executive director of health and medical services at Nelson Tebedo Clinic, said, “We have information available for review. We will not be entering information in ARIES.”
Dallas County sided with local AIDS service providers. After almost a year of negotiations, the state compromised and will allow agencies to provide the data needed by the state without posting confidential notes on line.
The only objections to using the system came from Dallas.
Raeline Nobles, executive director of AIDS Arms, said all agencies funded by Ryan White Part B money in Texas would be affected.
Houston doesn’t receive this type of funding. Agencies in other parts of the state told Nobles they were too small to fight the new mandate.
That left Dallas organizations to lead the fight to protect personal information from being compromised on line.
“We were successful,” said Nobles, who led the opposition and negotiated with the state on behalf of the county and Dallas AIDS service providers.
“DSHS has come back and decided to negotiate a fair and equitable deal,” she said. “Austin has done the right thing on behalf of clients and agencies.”
The state agency told both Nobles and Maison that it needed all of the client notes to audit the agencies. They said allowing state officials to examine the agencies without traveling to the various locations across the state would save money. The state, however, pays the county to review agency records.
Greg Beets, DSHS public information coordinator for HIV/STD programs, said that the reason behind ARIES is to codify and evaluate HIV services across the state. He said confidentiality was the state’s biggest concern as well.
“The data helps provide a snapshot of what services are being provided and identify unmet service needs,” Beets said.
Beets said that the system met standards developed at a national level and a series of measures would ensure security. Those measures included limited access to the information on a need-to-know basis, security at the building in which the computer was housed and encrypted information.
Those assurances did not satisfy Dallas AIDS agencies. Nobles pointed out that from time to time information is compromised from financial institutions that spent quite a bit of money on their technology.
“If information ever got out to the public, we’d be liable,” Nobles said.
Several years ago, the state required AIDS organizations to invest millions in new computer record keeping systems. She said all of the information is currently kept on a secure computer database within the agency. That computer system is not Internet-based.
Nobles’ agency raised several hundred thousand dollars to satisfy the unfunded mandate to build their database, and, she said, Parkland spent more than $1 million on their system.
To move the information to the new state computer system would be a complete waste of that money the state required her to raise from local donors, Nobles said.
She explained she feared moving the information off the database to a state system would compromise her credibility with her agency’s donors.
“But privacy is the number one issue,” Nobles said. “We can’t build a reliable relationship with clients if they don’t believe it’s confidential.”
Maison was even more adamant.
“This agency would be in court,” Maison said. “It wouldn’t take a rocket scientist to see what this policy does to make people run from care.”
Maison said people with HIV who use public services give up quite a bit of their privacy, “But to invite the government into your daily life is not acceptable.”
Nobles said she was never arguing about the state’s right to see AIDS Arms’ records. “Any time a government public health funder needs to audit, they can do so,” she said. She said that the information the state needs is statistical information.
But, Nobles added, she couldn’t imagine what use the client notes would have been.
The state will maintain the ARIES system. Nobles said smaller agencies, especially in rural areas that could not afford their own database, might want to use it.
Maison was happy with the outcome.
“I don’t recall being on the same side as the county before,” said Maison, who has headed ASD for more than 20 years.
Camp was also pleased with the outcome. “I’m very pleased Dallas County understood the importance of client confidentiality and backed the service providers,” he said.
This article appeared in the Dallas Voice print edition August 13, 2010.
