Last year during the H1N1 flu pandemic, I noticed something – when someone died in North Carolina, health officials told the public next to nothing about the person or the circumstances around their deaths. Long conversations ensued with health officials about this… finally, I produced this story.
While reporting the story, I queried the listserv for the Association of Health Care Journalists (AHCJ), of which I’m a member. I learned that standards for death reporting by public officials varies widely. In places like Kansas, health officials practically give out addresses, while in NC, health officials say “someone” died in the state. I questioned the need for such draconian standards of privacy protection. The rationale from state health officials was 1) compliance with HIPAA and 2) the desire to protect the feelings of families that may have recently lost a loved one. The implication was that journalists would be insensitive enough to ‘camp out’ in front of the homes of families where someone had died of flu and make things more difficult for grieving families.
2011 – Round 2. Last week, state health officials announced a 15 year old had died from flu this season. We don’t know if it’s a male or female. We don’t know where the teen lived – even something as vague as “in the Piedmont” or “in the Charlotte area”. Somehow, NC officials are convinced that the least amount of information is better.
Why does this matter? Is it just a nosy journalist thing?
Gene Matthews from the NC Institute of Public Health thinks it matters. He was the lead counsel for the CDC for 25 years – through the beginning of AIDS and a number of crises. He puts it best, “If we don’t tell people what’s happening, they’ll make it up.”
He agreed with me. I argued that you could reasonably say something like “a teenaged boy from the Piedmont who had diabetes, and who did not get vaccinated” without compromising privacy. That amount of information would satisfy public curiosity, but more important, it would give some context to the circumstances surrounding the death
Well, it turns out the Association of State and Territorial Health Officers decided last summer it matters to them, too. They produced a document reviewing how the H1N1 situation was handled countrywide (pdf). The document talks about how communication among all of the stakeholders, from the CDC to local health departments to the media to the public could have been better, and needs to improve, because H1N1 will definitely not be the last flu pandemic we see.
That resulted in several of us from AHCJ being invited to Washington this fall to discuss creating some principles for state health officers to follow when publicly reporting on deaths during an epidemic. The day-long meeting was a lively discussion between the journalists, several state health directors, some state level public affairs folks and staff at ASTHO (among others) on how to improve communications at all levels.
The final draft is still forthcoming, but will be coming, I’ve been assured. I called the ASTHO office last week to ask about it. Chief of staff Shawn Polk told me, “I don’t think its going ot disappear, fall into oblivion… ”