June 27, 2019
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Keeping information secret can make disease outbreaks worse

BIGSTOCK PHOTO | BDN
BIGSTOCK PHOTO | BDN
A child with chickenpox

A year after the Portland Press Herald sued the Maine Center for Disease Control for withholding information about a chickenpox outbreak in the state, the agency is proposing to change its rules to make it easier for it to shield such information from the public, the paper reported last week.

As it did last year in withholding information about the chickenpox outbreak, the center is seeking to ensure that individuals in CDC databases cannot be “indirectly identified,” when combined with other databases or information. In a very small school, for example, publicly reporting the number of children without vaccinations could allow community members to identify those children who lack their immunizations. This potential harm, however, is outweighed by the real need for someone with an immunodeficiency or the parent of a child with a compromised immune system to know if the potential for exposure to an infectious disease exists during an outbreak.

Such restrictions run counter to the American Public Health Association’s recommendations for sharing information during disease outbreaks, the New England First Amendment Coalition noted in comments opposing the rules changes, which it called “neither necessary nor helpful.”

The issue came to the public’s attention last spring when the Department of Health and Human Services announced there had been a record number of chickenpox cases among the state’s school-aged children.

From September 2014 through mid-May 2015, 84 cases of the highly contagious virus were reported in children, according to the Maine CDC. That’s nearly double the 44 cases reported during the same period of the 2013-14 school year.

The Bangor Daily News and Portland Press Herald asked for a list of the schools and other facilities where the outbreaks had occurred. When the department refused, saying the records were confidential, the Portland Press Herald sued. Neither paper asked for the names of those affected. DHHS had previously refused to provide the name of a Cumberland County restaurant where diners were exposed to hepatitis A.

The department provided the locations of the outbreaks to the Portland Press Herald in October as part of a settlement agreement. They happened at two public schools, one private school and one day care center.

It appears the proposed rule change is an attempt to formalize the confidentiality argument DHHS used unsuccessfully in court last year.

A notice about the rule change was posted on the secretary of state’s website on June 22. A public hearing on the proposed changes was held on July 13.

The proposed rules are detailed and contain mathematical formulas to determine what information can be released. Existing state law is much more straightforward. The statute concludes with this simple standard: “All information submitted pursuant to this chapter that does not name or otherwise identify individuals having or suspected of having a notifiable disease or condition may be made available to the public at the sole discretion of the department.”

“In its current form the definition of indirect identification is … overly broad and goes well beyond the level of secrecy necessary to safeguard protected health information of individuals,” Gordon Smith, executive vice president of the Maine Medical Association, wrote in comments submitted to the CDC about the proposed rules.

“It removes from the analysis any form of professional medical judgment about the danger of certain health risks, many of which cannot be predicted in advance. Instead it substitutes for that judgment a simple and undiscriminating mathematical formula,” he added.

He also noted there is no appeal mechanism and no mechanism to share restricted information with physicians and school nurses.

The restrictions proposed by the CDC are too broad and needlessly put public health at risk.

 



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