case studies

Joan Mazzolini is not eager to see the effects of the new federal medical privacy rules, mostly because she fears that a backbone of her investigative research -- medical records -- might disappear.

Even the doctors and nurses who offer Mazzolini tips, advice and interviews might suddenly shy away from talking to The Plain Dealer reporter, fearful they might get caught in a long, prosecutorial net of future medical privacy litigation.

"A great deal will depend on how people read the regulations and how stringent they want to be," she said. "I think there will be a lot of subjection in closing things, which is frightening."

With reporter Dave Davis, Mazzolini in 1995 earned a Pulitzer Prize nomination for a series of stories exposing abuses by Ohio doctors and hospitals, resulting in significant reforms in the state regulatory system. For another series, Mazzolini, Davis and Ted Wendling analyzed records involving some 55,900 organ transplants and discovered that hundreds of patients waiting for the lifesaving operations died because of nonmedical reasons, such as a surgeon not being available.

Mazzolini said she relies heavily on records, especially death and birth records, and fears that access would only worsen under the new rules.

Mazzolini said she figures the most diligent reporters would eventually get the story, but many would not.

"Ultimately, the public is hurt by this," she said.

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Fred Schulte of the South Florida Sun-Sentinel does not embrace a "sky-is-falling" reaction to the impending federal medical privacy rules, noting that many hospitals and doctors are more than willing to shove patients into the range of reporters and television cameras.

But he admits that the medical community does not need much of a reason to close up shop to journalists.

"Any time someone passes some kind of law like this, certain people are going to use it to block access whether they have to or not," Schulte said. "Give hospitals even the flimsiest reason to close records, and some of them are going to use it."

Schulte has spent much of his career investigating hospitals. He led an investigation at the Sun-Sentinel in 1987 that exposed serious medical mishaps, including deaths during heart surgery, at Veteran Administration hospitals across the nation. The series, nominated for a Pulitzer Prize, prompted considerable government reforms.

Along with reporter Jenni Bergal, Schulte was nominated twice again, first in 1996 for reports on Florida's tax-funded Medicaid health maintenance organizations and again in 1999 for an investigative series on the hidden dangers of cosmetic surgery, a relatively unregulated medical industry.

Schulte said he's not sure that the HIPAA requirements would have stifled the reporting for many of his series, considering that most of the medical information was already confidential.

"It's much more of a daily reporting type problem, I think," he said. "Investigative reporters have always had to plow around these things anyway."

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Soon after The Virginian-Pilot first reported in July 2001 about a state investigation of a Virginia Beach surgeon for improperly practicing medicine, the newspaper began its own exploration into the medical career of Dr. Robert G. Brewer.

The newspaper revealed what it called "a trail of ruined lives and wrecked bodies" resulting from complications and even death from surgeries to combat obesity.

The story might have been exposed a half year earlier if hospitals and medical organizations had been more forthcoming with records, said reporter Liz Szabo.

Szabo's review of nearly 2,000 pages of medical charts and court records revealed that serious problems with Brewer's surgeries began appearing as far back as 1990. But the state of Virginia allowed Brewer to continue treating patients for 11 more years.

Even when she secured permission from nearly a dozen of Brewer's former patients to view records, Szabo found hospitals and medical officials less than accommodating.

Szabo said she's not sure how the new federal medical privacy rules will affect her reporting in the future.

"It was extremely difficult to get records as it was," she said. "It was amazing how people circled wagons."

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Medical documentation is the lifeblood of Michael Berens' work.

For example, more than 10,000 pages of federal and state records detailing training, scheduling and discipline of nurses along with investigative reports of accidental deaths enabled the Chicago Tribune reporter to reveal for a September 2000 series of articles how hospital cutbacks created a shortage of qualified nurses and, subsequently, more than 2,000 accidental deaths and 9,500 injuries from 1995 to 2000.

But Berens fears the new medical privacy rules threaten to sap those very details from his investigative reporting.

"I think given a strict interpretation about how these rules were presented, much of the story would have been difficult," Berens said. "In our business, we never like to say impossible. But these rules greatly enhance their ability to keep their information from me, while greatly impacting my ability to get it."

And the information is essential, Berens said. Using such records for his series on hospital nurses and patient safety, Berens pinpointed how many patients suffered accidental overdoses, such as when a nurse accidentally typed in wrong coding into equipment.

"This kind of information would be stripped out of public records on purpose because it would be deemed some kind of violation of patient privacy," he said. "That death would have never been disclosed as a nursing error."

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After a predawn blaze tore through Seton Hall's Boland Hall on Jan. 19, 2000, and claimed three lives, reporters from newspapers such as The Star-Ledger in Newark, N.J., scrambled to help a concerned public keep track of nearly 60 other students who survived.

Relying on police reports and hospital directory information, Star-Ledger reporters managed to provide constant updates on the condition of students from the Roman Catholic school in South Orange, N.J.

Later, the newspaper approached the hospital and three of the burn victims' families about a series documenting their recovery. After considerable negotiation, the hospital and two families agreed, said Fran Daugh, a managing editor at The Star-Ledger. The newspaper also agreed the families could stop participating at any time.

The resulting stories won great acclaim, and the accompanying photos took home the Pulitzer Prize for feature photography for 2001.

Could such deadline and enterprise reporting have taken place under the new medical privacy rules?

Probably not, Daugh said.

And the newspaper, the public and even the hospital benefitted from the reporting, she said.

"The hospital could not have paid for that kind of publicity. They even have the story on their Web site," Daugh said. "I give the president of the hospital points for having the courage of letting it go forward. It was a pretty risky thing on the hospital's part, and it turns out it paid off in spades."