During the swine flu pandemic, journalists in the US became concerned about inconsistencies in how jurisdictions handled the release of information about H1N1 cases and deaths.
According to the Association of Health Care Journalists (AHCJ), the disparate approaches – with some jurisdictions releasing specific information about the age, gender and residence of victims and others releasing little or no personal information – became the subject of news reports, distracting from health messages and inadvertently undermining public trust.
These concerns led to a meeting last year between health journalists and public health information officers, which led to the release last week of voluntary guidelines for journalists and public health officials deciding what information to release/report about deaths, epidemics, emerging diseases or illnesses.
The overarching principle for public health officials is to be open and to strive to release as much information as possible, to withhold information only when there is a clearly justified reason to keep it confidential, and to explain the rationale for any decision to withhold information. The guidelines also note the need to balance legal and ethical considerations around privacy.
Nothing deepens anxiety and erodes trust more than the perception that government officials are hiding information from the public. Responses can range from unnecessary anxiety to denial, instead of informed, appropriate actions. In a public health crisis, officials need to balance the requirement to protect the confidentiality of individuals’ health information against the need to keep the public informed and engaged. In media parlance, the “cover-up” can become a bigger story than the actual event.
Thus, it is important for public health officials to provide as much information as possible or allowed, and for journalists to provide context for information provided. When information is withheld, it is important for public health officials to explain why and for the media to also report why, to avoid creating unwarranted distrust.
The guidelines urge journalists to balance their roles in providing information to the public with being watchdogs, monitoring the performance of public health officials and health care providers. They also say that journalists have a responsibility to provide the context that will enhance public understanding. “Journalists should question what they are told, but also report fairly what is revealed. They should neither exaggerate nor minimize, but strive to determine the truth and report it with balance and clarity.”
In summary, the guidelines say:
Health officials can best serve the public by providing as much information as possible within the limits of the law and the need to protect privacy, because openness fosters trust. Journalists can best serve their readers by filing complete and accurate stories that explain the full context, and by respecting individuals’ desire for privacy.
It’s interesting to see the level of productive engagement between journalists and public health officials in the US. I’m not aware of any such efforts in Australia in the wake of H1N1 (but please correct me if I’ve missed something…), although there were similar concerns among journalists here about variation between jurisdictions in the release of information.