HIPAA and H1N1/Swine Flu: Your Right to Know

Felice Freyer, veteran medical writer at the Providence Journal and Association of Health Care Journalists board member, is surveying reporters about how state and local agencies are releasing, or refusing to release, basic demographic information (not names) about people who have died from H1N1/swine flu.

It's an eye-opening effort. Reporters from Virginia, Minnesota and Tennessee are responding that state officials are declining to release even the most bare-bones information, such as county of residence. Some journalists also have noted difficulties in getting information about vaccine supplies or even statewide H1N1 death rates.

With her permission, I'm reposting her request to AHCJ members, but you certainly don't need to be a member to respond. I hope you'll share your experiences with Felice at felice.freyer@cox.net, because as she points out below, collective action is sometimes the only way to get public officials to release information that journalists - and the public - have a legal right to know. Officials often hide behind HIPAA inappropriately. Don't let them do it on this important public health issue.

Here are her questions:

When someone dies of H1N1, or a complication related to it, do your local health authorities make a public announcement or wait for you to ask about it?

How much do they reveal about the person?

Do they tell you:

1. Age (the exact age or a range?)

2. Sex

3. Place and time of death

4. Residence (do they provide the address, the municipality, the county?)

5. Whether the person had underlying illnesses (if so, do they specify the illnesses?)

6. Cause of death on the death certificate

Have you challenged them on the amount of information provided? What was the response?

Thanks to all.

Felice Freyer
AHCJ Right to Know Committee
felice.freyer@cox.net