A broad range of state health care organizations is opposing a proposed rule change by the Maine Center for Disease Control and Prevention that would give the state agency wide discretion to keep secret the locations of infectious disease outbreaks.

The Press Herald filed a lawsuit in July 2015 when the Maine CDC refused to release the locations of four chicken pox outbreaks, citing concerns over individual privacy. The newspaper argued that no individuals were being named and that listing the schools where outbreaks occurred was not infringing on personal privacy. An outbreak is defined as three or more infectious diseases in a location, such as a school.

MaineHealth statement on proposed rule changes

On Monday, July 25, MaineHealth, the state’s largest healthcare organization, submitted written comments on the Maine Center for Disease Control’s proposed rule regarding the release of health-related information.

MaineHealth supports efforts to keep private an individual’s health-related information as called for under the federal Health Insurance Portability and Accountability Act. However, the rule as proposed goes beyond the requirements under HIPAA. Indeed, it potentially limits the release of information to the extent that even aggregated, de-identified data could be kept from the public.

This could impact the ability of our healthcare providers to furnish guidance and provide needed care for patients. Information regarding disease outbreaks, immunization rates or environmental hazards such as contaminated water or foods is critical to protecting patients and communities. This is especially true for vulnerable populations such as children, the elderly, and those with chronic conditions or who are immunocompromised.

In its comments regarding the proposed rule, MaineHealth sought clarification regarding the circumstances where the Maine CDC would be authorized to release de-identified data. Specifically, MaineHealth requested that such information be released to health providers and the public when it is necessary to avoid harm to individuals or the public. Doing so could enable medical providers to provide communication and guidance about risks and, depending on the circumstances, suggest specific actions be taken. These could include seeking medical evaluation, testing, treatment, prophylactic medication, immunizations or avoiding a contaminated product, water source, location or other environmental hazard.

MaineHealth also requested that the rule include a provision providing for an appeals process when a request for de-identified data is denied, one that would take no more than three days under Maine’s Freedom of Access law.

Read letters from Maine Medical Association, MaineHealth and Eastern Maine Healthcare Systems

READ THE PRESS HERALD'S LETTER TO DHHS

In a settlement agreement with the newspaper in October, the Maine CDC released the names of three schools and a day care where outbreaks had occurred in the 2014-15 school year. In 2014, the agency also came under scrutiny for refusing to name the restaurant where a hepatitis A outbreak had occurred.

The rule change, if approved, would make it easier for the agency to deny public requests to disclose the locations of outbreaks.

Brunswick resident Neil Gallagher said the proposed rule runs counter to the agency’s mission of protecting the public from diseases.

“The agency is the Center for Disease Control, not the Center for Privacy Control,” Gallagher wrote in comments submitted during the public comment period, which ended Monday.

Among others who submitted comments in opposition to the proposed change were MaineHealth, a nearly statewide 18,000-employee health care network and the parent company of Maine Medical Center; the Maine Medical Association, which represents 4,000 doctors; and Eastern Maine Health Systems, the parent company of Eastern Maine Medical Center in Bangor and Mercy Hospital in Portland.

If the proposed rule is found to be legal when the Maine Attorney General’s Office evaluates it, the rule would go into effect within four months from Monday, the end of the comment period.

Dr. Jeffrey Aalberg, chief medical officer at MaineHealth, submitted written comments that said the proposed rule goes “beyond what is required” by a federal law that protects patient privacy.

“The proposed rule would hinder our efforts to take critical public health action in the face of an imminent or possible public health threat. Lack of ready access to data regarding disease outbreaks, contaminated food or water, school or community immunization rates, or other significant events would prevent MaineHealth facilities and providers from delivering the level of care necessary to protect the health of our patients and communities, which include vulnerable populations like children and adults with serious chronic conditions,” Aalberg wrote.

Gordon Smith, executive vice president of the Maine Medical Association, wrote that the rule “has the potential to restrict significantly the dissemination of data that may be necessary in times of significant public health risk to prevent the further spread of life-threatening illnesses.”

The Press Herald’s attorney has said that the proposed rule is in conflict with state open records laws. Maine CDC officials have said they do not comment while a rule change is pending.

CDC officials would not immediately provide a list of everyone who submitted public comments about the proposed rule, but said the Press Herald could file a Freedom of Access Act request to obtain a list of comments. It typically takes five business days for an agency to fill an FOAA records request.

Dr. Patricia Hymanson, a Democratic House member from York, said she also was submitting comments in opposition to the rule change.

“When there’s any outbreak, there needs to be complete transparency,” Hymanson, a neurologist, told the Press Herald.

Hymanson said notifying the public of the locations of outbreaks protects vulnerable populations, such as leukemia patients and others with compromised immune systems, babies too young for vaccines and the elderly.

Gallagher, the Brunswick resident, said the “information could be life-saving for anyone with a compromised immune system. How will the people in the CDC, and those who set its policies, live with themselves if a vulnerable person catches a disease by going into an area associated with a known but unpublicized outbreak and then dies as a result?”

A letter signed by EMHS officials Lisa Harvey McPherson and Douglas Michael urges the Maine CDC to “release as much information as possible” about public health outbreaks, citing a best practice defined by the National Association of County and City Health Officials and the Association of States and Territorial Health Officials and the Association of Health Care Journalists.

The Maine CDC’s internal policy is to release “only the minimum amount of data necessary” to protect public health.

The CDC argued when denying the newspaper’s request last year that releasing the school names could jeopardize personal privacy because “indirect information” about the outbreaks could result in the public being able to identify people who had fallen ill.

Sigmund Schutz, the Press Herald’s attorney, wrote that the rule is in conflict with state law, which requires the Maine CDC to release public records of outbreaks, except information that personally identifies someone who acquired a disease. Schutz said the proposed rule would permit the agency to deny public records requests even when no one could possibly be identified as having contracted a disease.

“Under the proposed rule, disease outbreaks at Maine schools would be kept secret from the public, including most of the information the department disclosed to the Press Herald last summer,” Schutz wrote.