HD73 - Cancer Registry Study Pursuant to HJR 524 and SB 942

Executive Summary:

House Joint Resolution (HJR) 524, agreed to by the 1999 General Assembly, directed the Joint Commission on Health Care (JCHC) to study Virginia's statewide cancer registry. Specifically, HJR 524directed JCHC to examine the effectiveness of the Virginia cancer registry in terms of:

• completeness of the registry data;

• timeliness of data reporting, collation and analysis;

• manner and thoroughness of data collation, including any geographic and population subcomponents;

• uses of the cancer registry data for prevention, treatment, and intervention analyses and strategies;

• access to the registry data by experts for research purposes and by the public for educational purposes;

• confidentiality of the registry data;

• legal basis for the Virginia cancer registry; and

• principles and practices currently in use for cancer control in Virginia.

Senate Bill (SB) 942, enacted by the 1999 General Assembly, directs JCHC to analyze the exchange of patient-identifying information pursuant to reciprocal data-sharing agreements with other state cancer registries, and confidentiality protections for patient data. SB 942 also directs JCHC to examine the potential for inappropriate disclosure of patient data as a result of such data exchange, and whether the patient should be required to consent to disclosure or authorized to bar such disclosure.

This report is organized into five sections. This section briefly discusses the authority for the study and its organization. The second section discusses the need for cancer surveillance activities. The third section examines various aspects of the operations of the Virginia Cancer Registry. The fourth section discusses how the Virginia Cancer Registry data can be used to support the state's overall cancer prevention and control efforts, while at the same time protecting the confidentiality of the information. The final section contains policy options developed by JCHC staff.