Ken Maddy California Cancer Registry.

Senator Richardson anchors California’s Ken Maddy California Cancer Registry in a measure that requires the Director of Public Health to establish and maintain statewide and regional cancer reporting infrastructures and to operate a statewide cancer reporting system, moving beyond a schedule of fixed milestones. The proposal removes certain dated deadlines and obligates the department to submit an implementation and funding schedule to the Legislature by January 1, 2027, while empowering designation of regional reporting areas and the awarding of contracts to operate the statewide system with procurement flexibility.

At the core, the measure designates regional reporting areas and authorizes regional cancer registries to collect and transmit cancer incidence data to the department, which may establish a competitive process to award contracts, grants, or other funding arrangements to operate the statewide system and to fund agencies representing designated regions. Contracts and related funding arrangements would include terms to ensure proper use of state funds, financial and performance reporting, monitoring of subgrants and subcontracts, retention and access to records, data use and management, independent auditing, and disposition of assets. Cancer would be designated as a reportable disease in the designated areas, and all cancers diagnosed or treated in the reporting area would be reported to the department or its authorized representative.

Reporting obligations are expanded and standardized: hospitals and facilities providing therapy must report each cancer case in a department-prescribed format, with the department empowered to access and report on their behalf if needed, and facilities responsible for the cost of such access. Physicians, surgeons, dentists, podiatrists, and other health care practitioners diagnosing or treating cancer must report cases, with specific exceptions for cases directly referred to a treatment facility or previously admitted for that cancer instance. Pathologists or pathology laboratories must report using CAP protocols or other department-approved formats, with electronic reporting via an EMR or department-provided portal; if electronic reporting fails, the department may obtain the data and the reporting facility must reimburse costs. The bill further specifies data elements, a standardized electronic submission framework, and protections to avoid duplicate reporting, including cure provisions if deficiencies are identified.

Confidentiality and data-sharing provisions establish a defined framework: information collected under the section is confidential, with use limited to identifying cancer sources and evaluating measures to address their effects; researchers with written confidentiality agreements and appropriate human subjects protections may access confidential information. Sharing with other states, federal agencies, local health officers, or researchers requires written agreements and adherence to confidentiality safeguards, including IRB approval for researchers and documentation of data security capabilities. Disclosures must be limited to necessary information and not be further disclosed, unless research involves data sharing with federal repositories under controlled conditions. Access records are maintained and publicly accessible, while the confidentiality provisions provide robust protections against subpoenas and compelled disclosure, with individuals retaining access to their own information under Civil Code provisions. The department is to partner with regional registries to maximize available federal funds, and the litigation and cost-recovery framework supports data access and reporting activities.

Implementation and policy context focus on governance, funding, and interoperability: the measure contemplates designating regional registries, awarding contracts or grants, and ensuring compliance through terms that include auditing, reporting, and asset disposition. It envisions electronic data submission standards, standardized pathology data formats, and an interoperable portal, with a strong emphasis on cost recovery for data access by reporting entities, a 60‑day payment window, and late fees, alongside potential recovery of litigation costs. Fiscal oversight is assigned to the Legislature’s committees, and the framework aims to coordinate federal funding through regional partnerships. The changes preserve facility-based cancer registries where they exist and clarify that the new framework does not preempt all existing registry authorities.