SB 344: Ken Maddy California Cancer Registry.

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 requires a pathologist diagnosing cancer to report cancer diagnoses to the department. Existing law requires the reporting to be by electronic means, including, but not limited to, either directly from an electronic medical record or using a designated internet web portal provided by the department. If a pathologist fails to report electronically and with an approved format, existing law authorizes the departments authorized representative to access the information from the pathologist in an appropriate alternative format. Existing law does not require the same pathology report to be submitted more than once, or by any other means if submitted to the department electronically.

This bill would authorize the department to require that the same pathology report be submitted more than once if deemed necessary by the department or its authorized representative and would require the department to notify a pathologist of any deficiencies should the department deem a pathologist noncompliant with this provision. The bill would also require the department to provide the pathologist an opportunity to cure the deficiencies. This bill would prohibit the department from imposing a fine or other penalty solely based on a pathologists failure to comply with this provision.

Under existing law, the information collected under the registry is confidential, except as otherwise provided, and any disclosure of information is to include only information necessary for the stated purpose of the disclosure. Under existing law, any further disclosure other than the approved purpose is prohibited. Existing law authorizes the department to enter into agreements to furnish confidential information to other entities, as specified. Before disclosing the information, existing law requires the requesting entities agree in writing to maintain the confidentiality of the information, and in the case of researchers, to follow additional specified conditions.

This bill would authorize the sharing of information collected if the original disclosure is for research that requires researchers to participate in data sharing with specified entities, provided the disclosed data does not include individually identifiable data that could be reasonably used to identify or reidentify the data with an individual person. The bill would also clarify only researchers with a valid scientific interest in the information are required to meet the additional conditions prior to the disclosure of the confidential information.