OAR 333-010-0035: Cancer Reporting Regulations: Patient Notification Requirement

This rule describes the process for notifying patients that information about a reportable cancer has been reported to OSCaR. (1) OSCaR may, but is not required to notify patients that information about a diagnosis of reportable cancer has been included in the registry. OSCaR may make a determination, based on budgeting constraints or otherwise, to curtail patient notification activities. (2) Information to be provided to patients. The notification to the patient shall include the following information about the purposes of the registry and the protection of confidentiality: (a) That Oregon statute requires that every cancer newly diagnosed in Oregon, or in an Oregon resident, be reported to the Oregon State Cancer Registry maintained by Oregon Health Authority; (b) That information reported to the Authority includes the type and characteristics of the cancer, details of the diagnosis and treatment given, and patient demographic information; (c) That the information is used to understand how cancer affects the population in Oregon, to design and implement prevention and control programs, and for research; (d) That the information is confidential and no identifiable information about the patient can be released to anyone unless very strict requirements, as provided by law, are met; (e) If those specific requirements, as provided by law, are met, researchers may be allowed to contact patients to offer them the opportunity to participate in research projects. Any invitation to participate in research is always voluntary and may be freely declined; and (f) That the researcher shall first notify the patient's physician regarding the patient’s participation in a research project, unless the patient specifies to OSCaR that their name never be released for any research purpose.