Bill > HB952

This bill establishes a comprehensive Parkinson's Disease Research Collection Database to be administered by the State Health Planning and Development Agency, aimed at improving understanding of Parkinson's disease in Hawaii. The database will collect voluntary epidemiological data from healthcare providers about patients diagnosed with Parkinson's disease and related conditions (Parkinsonisms), with patients having the right to opt-out of data collection. A nine-member advisory committee composed of medical professionals, researchers, and a patient will help develop and guide the database, determining what types of data to collect. Healthcare providers will be required to report Parkinson's disease diagnoses, though only the incidence of the disease will be reported for patients who opt-out. The agency must create a public webpage by January 1, 2026, and submit annual reports to the legislature detailing the incidents and prevalence of Parkinson's disease by county, including demographic information. The bill emphasizes strict confidentiality of patient data, ensuring that individual information cannot be subpoenaed or used in legal proceedings, and that only anonymized statistical reports will be published. The legislature recognizes the significance of this initiative, noting that approximately 4-7,000 people in Hawaii live with Parkinson's disease, and the national economic burden is expected to exceed $79 billion by 2037.

Budget and Finance, Health and Social Services

https://www.capitol.hawaii.gov/session/measure_indiv.aspx?billtype=HB&billnumber=952&year=2026