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About AHCJ: General News

Health officials, journalists agree information is key in public health crisis Date: 11/22/10

When the H1N1 pandemic first hit in the fall or 2009, every sickness and every death was of great interest to the public. Anxiety ran high; people wanted to know how this new illness was affecting their communities. In some places, public health officials released considerable information about the victims. In others, however, they revealed little or nothing.

That may change soon, thanks to a cooperative effort between AHCJ's Right to Know Committee and the Association of State and Territorial Health Officials, aimed at establishing flexible guidelines on how much information to reveal about victims in a public health crisis.

At AHCJ's request, ASTHO hosted a meeting on Oct. 8 at which reporters and health officials hashed out their concerns and reached common ground. The daylong meeting at ASTHO headquarters outside of Washington, D.C., was attended by health officials from the D.C. area as well from Alabama, Michigan, Rhode Island and two federal agencies. A state health official also participated by speaker phone from Tennessee. AHCJ was represented by journalists Charles Ornstein, Rose Hoban and Felice Freyer.

Health officials readily accepted the premise that openness is essential to maintain public trust, said Freyer, who chairs the Right to Know Committee. But they explained their worries about what the media might do (and have done) with the information released, such as scouring obituaries to deduce who died and distressing families by showing up at funerals. AHCJ agreed to advise its members that it is unethical to violate victims' privacy without permission.  

Significantly, Freyer said, everyone at the meeting endorsed one central principle: Openness is paramount, and information should be withheld only when there is a clearly justified reason to keep it confidential.

The group agreed that public health officials should release some information about the age, gender, residence, underlying conditions and time of death of every victim. How specific the information is (age range vs. exact age; general region vs. specific town) will depend on what is necessary to protect privacy under the local circumstances.

Currently, Rhode Island Health Director David R. Gifford and Freyer are working on turning these draft principles into a formal set of guidelines to be voted on by the ASTHO and AHCJ boards. The guidelines will be nonbinding but they will represent "best practices" that health officials and reporters can refer to during public health crises. With many governors taking office in January, a new crop of state health officials will be appointed, and the teams want to have the guidelines ready for them.

On other fronts, in response to the Right to Know Committee's complaints, the Joint Commission has revised its website so it is now possible to search hospitals by accreditation status. The search page for each state includes a filter that enables viewers to quickly pull up a list of hospitals that have lost accreditation or have conditional accreditation. Still missing, however, is online access to information about hospitals that lost accreditation more than a year ago.

The Right to Know Committee continues to push for more openness in the federal government and an end to newsgathering constraints imposed by public information officers. AHCJ is talking with the Society for Professional Journalists and the Society of Environmental Journalists about possible joint actions. It also continues to collect reporters' anecdotes about their experiences, positive and negative. Freyer advises members to send such notes and suggestions to her at felice.freyer@cox.net.