The Health Insurance Portability and Accountability Act of 1996 was passed to keep patients' private health information out of the hands of those who don't need to see it.
But because of concern over penalties and misunderstanding of the law, a new University of Michigan study found, the flow of many kinds of information has been hindered since the law took effect last April. Among them:
- Participation in medical "outcome" studies, considered critical to evaluating patient care, has plummeted to 38.5 percent from 96.1 percent.
- Law enforcers' and investigators' ability to work a case has been hindered when they can't get information about, say, a violent-crime victim's injuries.
- Clergy members have a harder time learning a parishioner has been hospitalized, especially in an emergency.
- For hospitals and health care administrators, the process has cost a lot of labor and paperwork, as well as retrofitting computer systems to incorporate new codes for billing purposes.
The parents of a missing Lawrence woman say a new medical-privacy law is making it harder to find their daughter, who they fear might be dead or kidnapped.
Lesley Smith's parents want Bert Nash Community Mental Health Center to provide them with phone records they think might yield a clue in their daughter's disappearance nearly two months ago. But they say the agency won't release the records to them or the Lawrence Police Department because of concerns the disclosure would violate a far-reaching federal privacy law that took effect last spring.
The Health Insurance Portability and Accountability Act of 1996, commonly known as HIPAA, shields most medical records from public view and imposes fines against agencies that wrongly release information.
But Smith's parents say the law could be harming their daughter instead of protecting her, and they question why Bert Nash won't make an exception in what might be a matter of life and death.
"That's the thing that just gnaws at me more than anything, to think that the one client that needs help most is the one they're turning their back on," said Marilyn Anderson, Smith's mother. "I think this HIPAA has gotten people so scared and so confused about what can and can't be done."
Still a mystery
Smith, a server at the Bella Lounge, lived with her mother and stepfather, Gary Anderson, in the 2000 block of Quail Creek Drive. She was last seen watching television at home the night of Jan. 26, a few days after celebrating her 38th birthday.
Her parents still have the balloons from the party. Marilyn Anderson said she didn't want to throw them away because they were still inflated.
The morning of Jan. 27, Smith was gone, along with the family's van and her cell phone. On her dresser, she left belongings that still sit there today: her purse, a stack of bills, her asthma inhaler, a pair of cat-eye glasses her mother bought her as a gag birthday gift.
Smith, who had taken antidepressants in the past, also left a note that alluded to medication, her mother said.
The phone call
Marilyn Anderson came home from work midmorning on the 27th to see if her daughter had returned. She didn't find her, but did find a message on the answering machine from a therapist Smith had been seeing at Bert Nash.
The message said simply that the therapist had received Smith's voice-mail message and was calling her back. What Smith's parents have been trying to find out for weeks is where their daughter was when she placed that call.
"That's been the missing link," Gary Anderson said.
The Andersons learned from talking with Smith's therapist that in the voice mail, Smith said she'd called Headquarters Counseling Center but couldn't get an answer she needed.
The Andersons pulled all their home and cell phone records and learned the call to Bert Nash didn't come from Smith's cell phone or from their home phone. They turned to Bert Nash and asked the agency to release a list of incoming calls from the days before Smith's disappearance.
'Because of HIPAA'
That list, the Andersons said, could be narrowed by eliminating clients' known phone numbers, then sifting through the ones left over.
At times, it seemed Bert Nash would accommodate them, the Andersons said. But earlier this month, the door slammed shut.
"We've been told through this whole process it's because of HIPAA," Marilyn Anderson said.
Scott McMichael, a Bert Nash spokesman, declined to discuss in detail the extent to which the HIPAA law was affecting Smith's case. He would say only that the agency was cooperating with authorities as much as possible while still respecting patient confidentiality.
"I don't think they're being overly cautious," said Pete Curran, an attorney who represents Bert Nash. "I think that they're interpreting what they're required to do and attempting to follow that as best they can."
Curran also said he didn't think the agency would have acted any differently pre-HIPAA.
The Lawrence Police Department has a detective assigned to the case, but one problem is that, if police knew they were investigating a crime, they'd have more power to obtain documents such as medical records by court order.
"Being a missing person is not against the law, therefore there's no current open criminal case," said Sgt. Mike Pattrick, a police spokesman.
Pattrick declined to discuss any more details of how HIPAA relates to Smith's case but said in general that there were instances when the law made it harder for police to get information. Before HIPAA, for example, police used to be able to find out from hospitals if certain types of patients had come in -- say, a driver suspected to have been injured during a hit-and-run accident.
Now, hospitals are not required to notify police about patients in the emergency room unless the person has been shot or stabbed with a sharp instrument, Pattrick said.
What law allows
HIPAA spells out certain pieces of information health-care providers can give to police who are trying to find a missing person, material witness, fugitive or crime suspect. It says the request must be initiated by law enforcement, not the health-care provider, and is limited to basic information such as dates of treatment, blood type and date of birth.
The part of the law that addresses missing people does not say anything about phone records.
"I understand very well about privacy, but I think there has to be an exception," Marilyn Anderson said. "After eight weeks, it's probably hopeless. We still don't know: Did she leave here, or did somebody get her?"