H1N1/Swine Flu: Why are Some Health Officials Hiding Behind HIPAA?

We have a guest post today from Felice Freyer, veteran medical writer for the Providence Journal, member of the Association of Health Care Journalists Board of Directors and chair of AHCJ's Right to Know Committee. Felice has been gathering stories from reporters around the country about how they are and aren't getting the H1N1/swine flu information they need from public health officials, and some of these stories are pretty appalling.

Got a story for Felice? You can email her via her ReportingonHealth profile.

Here is her post:

Health officials around the country vary widely in how they disclose H1N1 deaths in their communities and what information they will reveal about the dead, according to reports from AHCJ members and searches of public health press releases and Associate Press reports.

When a child died of H1N1 in Billings, Montana, local health officials held a press conference, according to an AHCJ member. They revealed the child's exact age, sex, city of residence and the place and time of death. They added that the child had no underlying illnesses. But when children died in New Hampshire and in Beaver County, Penn., the AP reported that health officials refused to reveal the child's age or gender.

AHCJ members say that when someone dies of H1N1 in Kansas or Florida, the state issues a press release, while Oklahoma and Alabama update tallies on their Web sites. Other states and counties release information only if asked, and some are silent even when asked.

In North Carolina and Tennessee, AHCJ members are finding that officials give out little information beyond the number of deaths that have occurred in the state, leaving the public in near-complete darkness about the toll of the H1N1 pandemic in their own communities.

If someone dies of H1N1 in Iowa or Illinois, public health officials reveal only that it's a "child," "adult" or "elderly adult." In Rhode Island and Washington state, an age range is disclosed, such as "in his 20s" or "age 45 to 55." Some states give the exact age.

A press release from Delaware provides helpful details: "Delaware's Division of Public Health (DPH) was notified this morning that a 52-year-old Kent County male, who was admitted to the hospital on October 21 with H1N1 flu-related complications, died on Saturday, November 7. The patient did have a very serious underlying healthy condition prior to contracting the flu."

But when a child died in North Carolina, state officials said, "To protect the family's privacy, the child's hometown, county, age and sex are not being released."

Why the wide differences? Health officials everywhere say they want to protect privacy. But in some places they are withholding more information than is necessary to prevent people from being identified. Perhaps they are unsure of what's allowable and play it safe by revealing as little as possible. This comes at a high cost, however. Health officials lose the public's trust when they hide information. Anyone may wonder: if they won't even say how old the victim was, what else are they concealing about the sicknesses affecting my community?

AHCJ is preparing a guide for journalists who have difficulty getting basic information about deaths that are of public interest. We also hope to work with public health officials on national level to encourage greater openness.