An outbreak of food-borne E. coli infections have killed at least 50 people in Europe this year and sickened thousands of others. An aggressive and sometimes fatal fungus spread in the Missouri region hit by a half-mile-wide tornado. A virulent new strain of H1N1 flu emerged in Mexico in 2009, ultimately infecting people around the world.
New or mysterious illnesses like these can be terrifying, especially when reliable information is scarce. In the absence of facts, people don’t know who is at greatest risk and how to protect themselves. Yet some health officials are slow to release information, concerned that it could cause needless worry or identify victims.
Policies about releasing information vary widely from agency to agency. During the swine flu pandemic, the disparate responses of health officials around the country were confusing and maybe even harmful. Some states, such as Delaware, regularly released many details about people who died of the illness. But when a child died in North Carolina, that’s all that officials would reveal: a child died of H1N1 somewhere in North Carolina.
In a public health emergency, journalists want details about when, where and how a death occurred to make their stories more complete and satisfy the public’s curiosity. But much more is at stake: Releasing accurate information reassures the public that officials are being honest about what they know and what the risks are.
One of us covered a story for the Los Angeles Times in 2002 in which Los Angeles County health officials didn’t tell the public about an outbreak of Legionnaire’s disease at Good Samaritan Hospital near downtown. Even survivors of two patients who died said they weren’t told about the infections.
The incident prompted sharp words from members of the Los Angeles County Board of Supervisors at the time. “There has been a culture in the health department that they know better than the public,” said Supervisor Zev Yaroslavsky, “that the public is just a bunch of boobs that aren’t equipped to handle bad news.”
Supervisor Mike Antonovich observed: “Keeping the outbreak from the public, the department raises suspicions of a coverup.”
Earlier this year, officials in Arkansas hid behind privacy laws when the flu claimed its first death. According to the Arkansas Democrat-Gazette, a spokesman for the state health department said that “he couldn’t reveal the county where the flu victim lived, what flu strain was responsible, whether the victim had been vaccinated for the particular strain contracted — or inoculated for flu at all.” He cited federal patient privacy laws.
How is the public supposed to be reassured by this? Residents of Arkansas were left to wonder whether the flu victim lived near them, whether this was some new and virulent strain, and even whether the flu vaccine was working.
As board members of the Association of Health Care Journalists, we have been troubled by the way some health officials cite privacy laws as the reason for withholding information that, by law, doesn’t have to be private.
Are state privacy laws really so different that officials in Delaware can provide more details than their counterparts in North Carolina or Arkansas? Not really. Instead, many officials play it safe, withholding much more information than is necessary to protect privacy.
Such cautiousness creates hazards of its own. Rumors and misinformation fill the void when health officials stay mum, sometimes sparking unfounded fears.
Decisions on what information to release can make or break the public’s trust in health authorities, at a time when trust is critical if people are to follow public health advice.
Our organization of healthcare journalists wanted to come up with a solution that would both keep the public informed and respect patient privacy. So we teamed up with the Association of State and Territorial Health Officials and the National Association of County and City Health Officials to develop some recommendations. To their credit, health officials were eager to work with us and professed a commitment to openness.
The end result was a set of voluntary guidelines affirming that health officials should withhold information only where there is a clearly justified reason to do so.
The guidance also calls on journalists to do their part: Learn the broader context of an incident, seek an explanation when public health officials say they cannot answer all the questions, and respect individuals’ desire for privacy. We make no excuses for journalists who report rumor rather than fact, crash funerals where they are not wanted or continue to call grieving relatives who have said they don’t wish to talk.
There will be another public health emergency — a different type of flu, perhaps, or an illness no one even knows about today. But next time, with this new guidance in hand, health officials across the country will be better equipped to balance privacy concerns with the public’s need to know what is happening in their communities.
• Freyer is the medical writer at the Providence Journal and chair of the Right to Know Committee of the Association of Health Care Journalists. Ornstein, a former Los Angeles Times reporter, is a senior reporter at ProPublica and board president of AHCJ. The “Guidance on the release of information concerning deaths, epidemics or emerging diseases” can be found online at www.healthjournalism.org.