Relating To Parkinson's Disease Research.
If enacted, SB447 will amend Chapter 321 of the Hawaii Revised Statutes to include provisions for the creation of a Parkinson's disease research database. This database will aggregate data on the incidence of Parkinson's disease and related conditions, necessitating healthcare providers to report relevant patient information to the Department of Health. The establishment of this database is seen as a crucial step toward facilitating research that could lead to enhanced treatment options and improved quality of life for individuals living with the disease, thereby addressing both public health and economic burdens associated with Parkinson's disease.
Senate Bill 447 proposes the establishment of a Parkinson's disease research collection database within Hawaii's Department of Health. This initiative is motivated by the increasing prevalence of Parkinson's disease, which currently affects approximately 4,000 to 7,000 individuals in Hawaii and is expected to rise significantly in the coming years. The bill highlights the importance of collecting comprehensive data to understand the incidence and prevalence of the disease, especially among the veteran population, which has a higher incidence when compared to the general public. By implementing this database, the state aims to better understand the factors contributing to Parkinson's disease and improve support for those affected.
While the bill seeks to promote valuable research, it raises issues related to patient privacy and data confidentiality. The legislation ensures that patient participation in data collection is voluntary and that individuals can opt-out of the study without repercussions. However, there may be concerns about the extent of data sharing and the measures in place to protect sensitive medical information. The unveiling of a public database could provoke debate about the balance between advancing medical research and safeguarding individual privacy rights. Stakeholders, including healthcare providers and patient advocacy groups, are anticipated to engage in discussions regarding the provisions outlined in the bill to address these issues.