AN ACT designating THE NORTH CAROLINA COLLABORATORY as the lead agency WITH RESPECT TO CANCER CLUSTER INVESTIGATIONS; establishing a cancer cluster advisory committee; and appropriating funds for the establishment of positions to assist the north carolina collaboratory with its cancer cluster investigation duties.

The General Assembly of North Carolina enacts:

SECTION 1.(a)  G.S. 130A‑212 reads as rewritten:

§ 130A‑212.  Confidentiality of records.

(a)        The clinical records or reports of individual patients shall be confidential and shall not be public records open to inspection. The Commission shall provide by rule for the use of the records and reports for medical research.

(b)        Subsection (a) of this section regarding the confidentiality of clinical records or reports of individual patients applies to the North Carolina Collaboratory at the University of North Carolina at Chapel Hill in the fulfillment of its duties under G.S. 116‑255 and this Chapter.

SECTION 1.(b)  Part 1 of Article 7 of Chapter 130A of the General Statutes is amended by adding the following new sections to read:

§ 130A‑212.5.  Central cancer registry data remains sole property of the State.

The following data is and remains the sole property of the State of North Carolina:

(1)        All data entered or stored in the Central Cancer Registry.

(2)        All Central Cancer Registry data shared with the North Carolina Collaboratory at the University of North Carolina at Chapel Hill.

§§ 130A‑212.6 through 130A‑212.9.  Reserved for future codification purposes.

§ 130A‑212.10.  Lead agency for cancer cluster investigations.

(a)        The North Carolina Collaboratory at the University of North Carolina at Chapel Hill, established under Article 31A of Chapter 116 of the General Statutes, shall be the lead agency for cancer cluster investigations in North Carolina. The North Carolina Collaboratory shall oversee the coordination of State‑level efforts and activities related to cancer cluster inquiries and investigations, including efforts and activities by the Department of Health and Human Services, Occupational and Environmental Epidemiology Branch, and the Department of Environmental Quality, in a way that maximizes efficiency and effectiveness.

(b)        The North Carolina Collaboratory shall maintain a webpage on its internet website dedicated to cancer cluster investigations, which shall include the identity of, and contact information for, the cancer epidemiologist selected to serve as the single point of contact for State‑level cancer cluster activities pursuant to G.S. 130A‑212.11.

§ 130A‑212.11.  Cancer epidemiologist.

The North Carolina Collaboratory shall employ and retain an epidemiologist with knowledge, training, and experience in cancer epidemiology, including cancer cluster investigations, whose primary responsibility shall be to coordinate and communicate State‑level cancer cluster activities. To fulfill this primary responsibility, the cancer epidemiologist shall have the following duties and powers:

(1)        Lead State‑level cancer cluster inquiries and investigations in collaboration with the Occupational and Environmental Epidemiology Branch and the Department of Environmental Quality, as appropriate.

(2)        Serve as the single designated point of contact for State‑level cancer cluster activities.

(3)        Conduct routine cancer surveillance activities.

(4)        Proactively monitor cancer rates statewide, including analyzing patterns of cancer incidence over geographic areas and time.

(5)        Lead in the development, ongoing review, and updating of the statewide cancer cluster protocol established pursuant to G.S. 130A‑212.12, with assistance from the Advisory Committee.

(6)        Developing and disseminating reports.

§ 130A‑212.12.  Statewide cancer cluster protocol.

The North Carolina Collaboratory, in collaboration with the Central Cancer Registry and the Cancer Cluster Advisory Committee created by G.S. 130A‑212.13, shall establish and periodically update an enhanced statewide cancer cluster protocol for addressing suspected cancer clusters within the State. The protocol shall be based on the most current Centers for Disease Control and Prevention (CDC) guidelines for public health agencies to assess and respond to potential cancer clusters. At a minimum, the protocol shall incorporate all of the following:

(1)        Best practices for all phases of cancer cluster assessment, including (i) surveillance for identifying new cancer cases and monitoring trends, (ii) inquiries, and (iii) detection and investigation.

(2)        State and local infrastructure needs.

(3)        Innovative statistical methods, software tools, and analytic approaches for analyzing cancer rates and detecting cancer clusters.

(4)        A comprehensive plan for internal communication within the Department as well as external communication with local health departments, the community, the media, and other stakeholders.

§ 130A‑212.13.  Cancer Cluster Advisory Committee.

(a)        There is created the Cancer Cluster Advisory Committee of the North Carolina Collaboratory. The Advisory Committee shall meet at least quarterly with the cancer epidemiologist described in G.S. 130A‑212.11 to provide advice and assistance to the North Carolina Collaboratory on (i) the statewide cancer cluster protocol described in G.S. 130A‑212.12 and (ii) any State‑level cancer cluster activities being conducted across the State. The Advisory Committee shall be comprised of 13 individuals with expertise in cancer cluster investigations, who shall be appointed as follows:

(1)        Two cancer epidemiologists, one each appointed by the President Pro Tempore of the Senate and the Speaker of the House of Representatives.

(2)        Two environmental health scientists, one each appointed by the President Pro Tempore of the Senate and the Speaker of the House of Representatives.

(3)        One local health director from a rural area of the State, appointed by the Governor.

(4)        One local health director from an urban area of the State, appointed by the Governor.

(5)        One statistician appointed by the Governor.

(6)        Two public members appointed by the Governor.

(7)        The cancer epidemiologist appointed pursuant to G.S. 130A‑212.11.

(8)        The Director of the Central Cancer Registry or a designee of the Director.

(9)        The Director of the Occupational and Environmental Epidemiology Branch or a designee of the Director.

(10)      The Secretary of the Department of Environmental Quality or a designee of the Secretary.

(b)        Members appointed pursuant to subsection (a) of this section shall serve for a term of three years, and no member shall serve more than two consecutive terms.

(c)        Members shall receive per diem and necessary travel and subsistence expenses in accordance with the provisions of G.S. 138‑5 or G.S. 138‑6, travel and subsistence expenses in accordance with the provisions of G.S. 120‑3.1, or both, as applicable.

(d)       All administrative support and other services required by the Advisory Committee shall be provided by the University of North Carolina at Chapel Hill.

(e)        The Executive Director of the North Carolina Collaboratory of the University of North Carolina at Chapel Hill shall select the chair of the Advisory Committee from among its members.

(f)        A majority of the Advisory Committee members shall constitute a quorum. A majority vote of a quorum shall be required for any official action of the Advisory Committee. Following the first meeting, the Advisory Committee shall meet upon the call of the chair or upon the request of a majority of the Advisory Committee members.

SECTION 1.(c)  The chair of the Cancer Cluster Advisory Committee established by G.S. 130A‑212.13, as enacted by this act, shall convene the first meeting of the Committee no later than April 1, 2024.

SECTION 2.(a)  There is appropriated from the General Fund to the Board of Governors of The University of North Carolina the sum of three hundred fifty‑eight thousand three hundred twenty‑seven dollars ($358,327) in recurring funds for the 2023‑2024 fiscal year and the sum of three hundred fifty‑eight thousand three hundred twenty‑seven dollars ($358,327) in recurring funds for the 2024‑2025 fiscal year, to be allocated to the University of North Carolina at Chapel Hill for the North Carolina Collaboratory (Collaboratory), to be used as follows:

(1)        The sum of one hundred eleven thousand four hundred fifty‑seven dollars ($111,457) in recurring funds each year of the 2023‑2025 fiscal biennium to create one full‑time equivalent Cancer Epidemiologist position within the Collaboratory dedicated to cancer cluster investigations.

(2)        The sum of ninety‑six thousand six hundred thirty‑five dollars ($96,635) in recurring funds each year of the 2023‑2025 fiscal biennium to create one full‑time equivalent Public Health Educator II position within the Collaboratory dedicated to assisting the Collaboratory with communications during cancer cluster investigations and, as the results of these investigations are made available, to the Department of Health and Human Services, local health departments, the media, and the general public.

(3)        The sum of one hundred fifty thousand two hundred thirty‑five dollars ($150,235) in recurring funds each year of the 2023‑2025 fiscal biennium to create two full‑time equivalent Certified Tumor Registrar positions within the Collaboratory dedicated to coordinating outreach, communication, and onboarding with physician practices to improve cancer case identification across the State. These positions shall be responsible for (i) designing and implementing an onboarding and training program to support increased compliance with State‑mandated cancer case reporting requirements imposed on physician practices, (ii) providing training and, when necessary, re‑training on cancer case reporting when necessary to physician practice staff, including case entry into a web‑based application developed by the CDC and maintained by the Central Cancer Registry information technology staff, and (iii) monitoring compliance with State‑mandated cancer case reporting requirements.

SECTION 2.(b)  The funds allocated in this section to create full‑time equivalent positions shall not be used to supplant any other source of funding for these positions.

SECTION 2.(c)  This section becomes effective July 1, 2023.

SECTION 3.  Except as otherwise provided, this act becomes effective October 1, 2023.