October: The public needs access to health info

2003 Columns

Do mosquitoes have HIPAA rights?

You might have thought so if you read a Milwaukee Journal Sentinel story last September reporting that the first West Nile virus-positive mosquitoes had been detected in Milwaukee County.

City Health Department officials refused to reveal where the mosquitoes had been trapped. They gave two reasons: not wanting to alarm people about a particular neighborhood or suburb, and not wanting to give the rest of the county a false sense of security because people everywhere need to take precautions against West Nile.

Those reasons, of course, have nothing to do with the federal Health Insurance Portability and Accountability Act that is now redefining what kinds of health-related records and information are publicly available.

But they exemplify larger problems that HIPAA has compounded for journalists who report on public health. These include:

  • A desire on the part of officials, however well-intentioned, to control health information not because of legitimate privacy concerns but because of what they fear people will do with the information.
  • A lack of reasonableness about what details can be released without enabling someone to identify a patient.

Recent examples: The refusal of state officials to reveal what city or sometimes even what county people with SARS, West Nile virus or monkeypox live. In some cases, officials won’t even say if the victim is male or female, or give an age range.

Knowing that the person is “a Brown County man in his 40s….” is all a reporter really needs. There’s simply no way someone could be identified from that sparse demographic information and therefore no justification for officials to withhold it.

Situations like these show how different it is to cover public health than other forms of government. For starters, few health records are public, compared to those kept by school districts or city councils.

There are few meetings to cover. Those that do occur can easily be closed to the press by declaring that patient confidentiality or public safety is at stake.

Sometimes it is and sometimes it isn’t.

A consortium of Milwaukee and Waukesha County health officials formed about a year ago to improve bioterrorism preparedness says its meetings are not open to the press. It’s hard to believe that everything this group discusses could be of use to terrorists and would compromise security if it were reported.

But covering public health is different and challenging in a more important and fundamental way. The key players are not politicians or ordinary people. They’re doctors, scientists and epidemiologists who have training, knowledge and experience that reporters and editors lack.

They don’t trust journalists, often because we’ve gotten things wrong in the past, have treated them with the heavy-handed and mistrustful style we afford most other government officials, or understand so little about health that we scare them and make them think they’ll have to do damage control after our stories run.

However, journalists know a few things they don’t — namely, what people want to know and how to communicate it in a way they’ll understand and want to read.

Health literacy is poor and mistrust of the medical establishment is high. If this were not true, we wouldn’t have people misusing antibiotics, dosing themselves with unproven herbal remedies and trusting Internet web sites more than their doctors.

Journalists and health officials share a common goal of getting important health news to the public. But problems arise when officials censor information or provide only what they think is fit for public consumption.

The only justification for withholding information should be to protect a patient’s identity and prevent harm from coming to someone because of a private health matter. And that ought to pass the strong test of reasonableness.

Clearly it was not reasonable to withhold the location of those West Nile-positive mosquitoes. Readers have a right to such information, and can make up their own mind how to interpret the risk such mosquitoes do or don’t pose to them.

I got complaints at the time from readers who wanted that information, and I referred them to the officials who withheld it. Unless officials hear from ordinary people — not just reporters like me — readers will continue to get only the news that officials think is fit to print.

Marilynn Marchione is a health and science writer for the Milwaukee Journal Sentinel. Your Right to Know is a monthly column produced by the Wisconsin Freedom of Informational Council, a media group devoted to protecting public access to meetings and records.