Existing law requires the State Department of Public Health to establish a statewide system for the collection of information determining the incidence of cancer known as the Ken Maddy California Cancer Registry. Existing law authorizes the department to designate any demographic parts of the state as regional cancer incidence reporting areas and establish regional cancer registries to provide cancer incidence data. Under existing law, all cancers diagnosed or treated in the reported area are required to be reported to the representative of the department authorized to compile that data, or any other person or entity designated to cooperate with that representative. Existing regulations require cancer reporting facilities and physicians to employ a mechanism to ensure that their patients are informed that the facility will report each patient with cancer to the State Department of Public Health as required by law.

Under existing law, health care practitioners, including, among others, physicians and surgeons, and any hospital or other facility providing diagnostic or treatment services to patients with cancer are required to grant to the department or the authorized representative access to all records that would identify cases of cancer or would establish characteristics of the cancer, treatment of the cancer, or medical status of any identified cancer patient. All information collected pursuant to those provisions is generally required to be kept confidential. Existing law authorizes the department to enter into agreements to furnish confidential information to specified persons and entities, including other states’ cancer registries, local health officers, and health researchers.

This bill would require the State Department of Public Health to inform a patient diagnosed with cancer by, or receiving cancer therapy treatment from, a specified health care practitioner, or a hospital or other facility within an area designated as a cancer reporting area of the reporting requirement, and would require the department to also notify a patient of specified information, including, among other things, that the department is authorized to release confidential patient information to health researchers. The bill would prohibit cancer reporting facilities and physicians from being required to employ a mechanism to ensure that their patients are informed that the facility will report each patient with cancer to the State Department of Public Health. This bill would require the department to notify the patient, in a cost-effective manner, within 6 months of his or her case being reported to the department. The bill would also prohibit the department from disclosing confidential patient information to certain specified persons or entities until the department informs the patient of the reporting requirement. The bill would also allow a patient to refuse to participate in any research study and authorizes a patient to request that his or her contact information be withheld from health researchers.