By Leann Frola
(more by author)
Naughton Fellow
It was the day after Katrina hit when the hospital's backup generators
went out. A young man gasped for air in his bed. Another patient's clear plastic tube, attached to his bladder, filled with blood. Their mothers watched, helpless. Charity Hospital's backup power
system was under water -- cutting off hundreds of patients from their machines.
This scene sets the stage for a
22-part series that ran in
The Atlanta Journal-Constitution earlier this year. The series documented the struggle of those trapped in two New Orleans hospitals after the hurricane. Reported by the
AJC's Jane Hansen, the series shows it's possible, despite privacy laws, to get the story and still respect the patient.
For Hansen,
HIPAA -- that "H-word" dreaded by journalists that stands for the Health Insurance Portability and Accountability Act -- didn't stop her from getting what she needed. In part, because the hospitals were in such dire conditions that few people cared about the law. And, in part, because she found ways around the law when it did come up.
What helped her most, Hansen said in a phone interview, was going directly to the patients and their families. Once she got the OK from them, the doctors gave her information freely.
Getting the patient's approval is necessary even if you can get information without it,
New York Times health care reporter
Richard Pérez-Peña said in an e-mail interview. Privacy laws are there for a reason, he said. And even if they weren't, you should respect the patient's privacy.
"The problem you encounter is that doctors, hospitals and other providers act as though the privacy laws exist to protect them, not the patients," he said.
Sometimes hospitals turn reporters away without asking patients for their approval to be interviewed. Or, they discourage them from cooperating,
Charlie Ornstein, a health policy reporter at the
Los Angeles Times, said in an e-mail interview.
"In a couple cases, I have had signed consents from patients, authorizing the release of personal information, and yet hospitals still somehow have found ways to resist," he said.
Ornstein, who is also vice president of the
Association of Health Care Journalists, recommends bringing HIPAA tip sheets (like
the ones you can find here) to explain the details of the law to a health care administrator.
Hansen said she encountered problems while gathering information on the patients who died at Charity in the
days after the storm. Medical personnel gave her conflicting
information, so Hansen tried to corroborate the patients' names with a Charity
administrator. The administrator told her the hospital couldn't release the names because of
HIPAA.
"I said, 'Look. I'm not going to use this name. I just
want to make sure what I've written about him is accurate,' " Hansen
said.
Once the administrator understood that Hansen only
wanted verification and wouldn't use the patients' names,
she gave her the information. In one case, when another hospital administrator wouldn't talk, Hansen read him a
sentence that she believed to be true and asked if it'd be
accurate if she were to publish it.
"We spoke a little in code," Hansen said.
When you're trying to find a patient with a specific disease, Ornstein said to browse Internet chat rooms and advocacy groups, in addition to hospitals and physicians' offices. After contacting the patient, ask him or her to sign a consent form that will provide the hospital or physician with the patient's permission to discuss his or her case.
"Be persistent," Ornstein said. "Explain exactly what you are looking for and why it is important that you have the information."
Patients have also called Ornstein directly to ask him to investigate problems with their care. Other times, he has located patients using anonymous tips. In these cases, Ornstein asks the
patients to request their own medical records. Then he reads them and
passes them on to medical experts to review. Only after that does he
approach the hospital for a response.
If a health care provider won't cooperate, ask around, Pérez-Peña said. It often takes several tries, but eventually you'll find a provider who's willing to talk with patients about getting their permission for an interview.
When you're focusing on a particular provider, it can be more difficult, he said, "especially if that provider is afraid of scrutiny." So talk to people entering and leaving the business, until you find someone who will cooperate. By hanging around, you might see and hear things you normally wouldn't. If you can't hang out in the office, you can always wait outside the building.
And sometimes, Pérez-Peña said, people just blurt out what you're looking for.
"The fact is (I shouldn't admit this), when you don't directly ask people for information, they're often pretty sloppy about safeguarding it."
I don't have any disagreements with the HIPAA sory. As...
