Section 19a-NEW - [Newly enacted section not yet numbered] Statewide registry of data on Parkinson's disease and Parkinsonism(a) As used in this section:(1) "Health care provider" means any person or organization that furnishes health care services to persons with Parkinson's disease or Parkinsonism and is licensed or certified to furnish such services pursuant to chapters 370 and 378 of the general statutes; and(2) "Hospital" has the same meaning as provided in section 19a-490 of the general statutes.(b) Not later than April 1, 2026, the Department of Public Health, in collaboration with a public institution of higher education in the state, shall maintain and operate, within available appropriations, a statewide registry of data on Parkinson's disease and Parkinsonism.(c) Each hospital and each health care provider shall make available to the registry such data concerning each patient with Parkinson's disease or Parkinsonism admitted to such hospital or treated by such health care provider for such patient's Parkinson's disease or Parkinsonism as the Commissioner of Public Health shall require by regulations adopted in accordance with chapter 54 of the general statutes. Each hospital and health care provider shall provide each such patient with notice of, and the opportunity to opt out of, such disclosure.(d) The data contained in such registry may be used by the department and authorized researchers as specified in such regulations, provided personally identifiable information in such registry concerning any such patient with Parkinson's disease or Parkinsonism shall be held confidential pursuant to section 19a-25 of the general statutes. The data contained in the registry shall not be subject to disclosure under the Freedom of Information Act, as defined in section 1-200 of the general statutes. The commissioner may enter into a contract with a nonprofit association in this state concerned with the prevention and treatment of Parkinson's disease and Parkinsonism to provide for the implementation and administration of the registry established pursuant to this section.(e) Each hospital shall provide access to its records to the Department of Public Health, as the department deems necessary, to perform case finding or other quality improvement audits to ensure completeness of reporting and data accuracy consistent with the purposes of this section.(f) The Department of Public Health may enter into a contract for the receipt, storage, holding or maintenance of the data or files under its control and management for the purpose of implementing the provisions of this section.(g) The Department of Public Health may enter into reciprocal reporting agreements with the appropriate agencies of other states to exchange Parkinson's disease and Parkinsonism care data.(h) The Department of Public Health shall establish a Parkinson's disease and Parkinsonism data oversight committee to (1) monitor the operations of the state-wide registry established pursuant to subsection (b) of this section, (2) provide advice regarding the oversight of such registry, (3) develop a plan to improve quality of Parkinson's disease and Parkinsonism care and address disparities in the provision of such care, and (4) develop short and long-term goals for improvement of such care.(i) Said committee shall include, but need not be limited to, the following members, who shall be appointed by the Commissioner of Public Health not later than April 1, 2026: (2) a movement disorder specialist; (3) a primary care provider; (4) a neuropsychiatrist who treats Parkinson's disease; (5) a patient living with Parkinson's disease; (6) a public health professional; (7) a population health researcher with experience in state-wide registries of health condition data; (9) a family caregiver of a person with Parkinson's disease; (10) a representative of a nonprofit organization related to Parkinson's disease; (11) a physical therapist with experience working with persons with Parkinson's disease; (12) an occupational therapist with experience working with persons with Parkinson's disease; (13) a speech therapist with experience working with persons with Parkinson's disease; (14) a social worker with experience providing services to persons with Parkinson's disease; (15) a geriatric specialist; and (16) a palliative care specialist. Each member shall serve a term of two years. The commissioner shall appoint, from among the members of the oversight committee, a chairperson who shall schedule the first meeting of the oversight committee on or before April 1, 2026. The Department of Public Health shall assist said committee in its work and provide any information or data that the committee deems necessary to fulfil its duties, unless the disclosure of such information or data is prohibited by state or federal law. Not later than January 1, 2027, and annually thereafter, the chairperson of the committee shall report, in accordance with the provisions of section 11-4a of the general statutes, to the joint standing committee of the General Assembly having cognizance of matters relating to public health, regarding the work of the committee. Not later than January 1, 2027, and at least annually thereafter, such chairperson shall report to the Commissioner of Public Health regarding the work of the committee.(j) The Commissioner of Public Health may adopt regulations, in accordance with the provisions of chapter 54 of the general statutes, to implement the provisions of this section. The commissioner may implement policies and procedures necessary to administer the provisions of this section while in the process of adopting such policies and procedures as regulations, provided notice of intent to adopt regulations is published on the eRegulations System not later than twenty days after the date of implementation. Policies and procedures implemented pursuant to this section shall be valid until the time final regulations are adopted.Conn. Gen. Stat. § 19a-NEW
Added by P.A. 24-0019,S. 26 of the Connecticut Acts of the 2024 Regular Session, eff. 5/21/2024.