SB 27

Bill Subjects

Administrative Regulations And Proceedings Advisory Boards, Commissions, And Committees Data Processing Diseases Health And Medical Services Hospitals And Nursing Homes Physicians And Practitioners Reports Mandated State Agencies

Abstract

Create a new section of KRS Chapter 214 to define terms; establish the Kentucky Parkinson's Disease Research Registry within the Cabinet for Health and Family Services; direct the secretary of the cabinet to establish the Kentucky Parkinson's Disease Research Registry Advisory Committee and make appointments; require the cabinet to promulgate administrative regulations to designate Parkinson's disease and the identified Parkinsonisms as diseases that are required to be reported to the cabinet, establish a system of collection and dissemination of information on the incidence and prevalence of Parkinson's disease in Kentucky through the registry, identify data points to be collected, establish a coding system to safeguard patients' privacy, and develop guidelines for sharing registry data for research purposes; require the cabinet to collect and receive data for the registry; authorize the cabinet to enter into data-sharing contracts; require all health facilities and licensed health care providers to submit Parkinson's disease reports to the cabinet beginning on January 1, 2026; require facilities and providers to provide patients with notice of the submission of data to the registry and an opportunity to opt out of having their information shared; require the cabinet to make the registry data available to researchers in compliance with the Federal Policy for the Protection of Human Subjects and other federal and state privacy laws and regulations; authorize the sharing of data with other registries, agencies, and officers if confidentiality requirements are followed; provide that sharing of information in accordance with security and privacy requirements does not expose a person to liability; direct the cabinet to maintain an accurate record of all persons who have been granted access to registry data and make the record available to the public; state that nothing compels an individual to submit to any medical examination; prohibit researchers from contacting a patient or patient's family unless the cabinet has first obtained the patient's permission; require the cabinet to submit a yearly program summary update to the Interim Joint Committee on Health Services and establish a registry website where the public can access the report and other information on Parkinson's disease.