Bay Area Hospitals, Researchers Debate Privacy Policies for State Cancer Registry

Citing the medical privacy rule of the Health Information Portability and Accountability Act, at least 17 Bay Area hospitals have restricted the access of epidemiologists working on the state cancer registry to patient medical records, the San Francisco Chronicle reports. The hospitals say they have moved away from Rapid Case Ascertainment -- a system that provided registry epidemiologists with access to pathology reports of "aggressively fatal tumors" quickly after diagnosis -- because of concerns about whether the practice was compliant with the medical privacy rule. The hospitals say they report cancer cases to the registry within the state-mandated period of six months, but some cancer researchers say the change in policy is affecting their work, according to the Chronicle.

The University of California-San Francisco was the first hospital to change its rapid access policy, and the University of California Office of the President later adopted the policy. UC officials said the medical privacy rule does not allow registry epidemiologists "unfettered access" to patient records at its hospitals.

Dr. John Wiencke, a UCSF cancer epidemiologist, said, "We study a disease that kills you in three months. If we wait a year, we won't have any subjects to study."

Dennis Deapen of the North American Association of Central Cancer Registries, said, "If you miss the rapidly fatal patients, you miss the patients of most concern."

HHS Civil Rights Director Richard Campanelli said there are no federal rules that would stop RCA. "It was designed so that it would permit research to go forward and would protect privacy," he said.

Roberta Ward, an attorney for the Department of Health Services, wrote in a January letter to UC legal staff that the rapid access system was not prohibited by state or federal law and that UC hospitals could be fined $500 daily if they continued to deny the Cancer Registry access to patients' medical records.

Dr. Kevin Reilly, deputy director of prevention services for DHS, said, "The law is extremely clear on this. The state or its representatives are to be allowed access to these cancer records," adding, "We do understand that the law allows for fines, and we will consider pursuing those avenues if need be."

Maria Faer, who is responsible for medical privacy rule compliance throughout the UC system, said there are concerns that a cancer patient would learn of a diagnosis through medical researcher recruitment rather than a doctor. Faer said she would like a "reasonable lag time" of four to six weeks during which researchers would be barred from contacting patients to prevent accidental disclosure.

Critics say such a disclosure is unlikely because most researchers contact physicians before recruiting a patient for a study, the Chronicle reports.

UC lawyers say there is no law that requires university hospitals to disclose cancer records in less than six months. They also maintain that allowing state epidemiologists access to medical records of patients who do not have cancer violates the medical privacy rule.

Registry epidemiologists examine noncancer patient charts "routinely" to ensure hospitals are accurately reporting cancer cases, according to the Chronicle.

UC President Robert Dynes said that blocking rapid access to records is "both legal and ethical" and that privacy laws have "caused institutions and individuals to question historical practices that could be in violation of patient privacy."

Pam Davis, director of oncology services at Alta Bates Summit Medical Center in Berkeley, said, "There is a state mandate to report, and a federal mandate to protect privacy. That's kind of a Catch-22," adding, "The reason these issues have come up is that we are all trying to do the right thing" (Russell, San Francisco Chronicle, 9/26).