Relating To Parkinson's Disease Research.
If enacted, SB1049 will amend Chapter 321 of the Hawaii Revised Statutes to incorporate provisions for a Parkinson's disease research database. This database will serve as a central repository for data related to the incidence and prevalence of Parkinson's disease and other related conditions across the state. By capturing comprehensive data, state health officials aim to better understand the demographics of affected individuals, as well as potential links to military service, given the increased incidence among veterans. The creation of this database is expected to aid in the future planning and allocation of health resources. Furthermore, annual reports will mandate transparency and provide up-to-date information to the legislature on the state of Parkinson's disease in Hawaii.
Senate Bill 1049, introduced in the Thirty-Third Legislature of Hawaii, is designed to enhance research and understanding of Parkinson's disease within the state. The bill aims to establish a dedicated research collection database managed by the Department of Health, which would facilitate the collection and analysis of data surrounding Parkinson's disease cases in Hawaii. The legislation is motivated by the increasing prevalence of the disease, which is expected to affect as many as 1.6 million individuals nationally by 2037, and acknowledges the significant economic burden it imposes, estimated at $52 billion annually.
While supporters of SB1049 emphasize the bill's potential to enable more effective research and better health outcomes for individuals living with Parkinson’s disease, some concerns may arise regarding the confidentiality of the personal health data collected. The legislation includes explicit provisions to ensure that collected data remains confidential and outlines the rights of patients to opt-out of participation in the database. However, skepticism may linger among stakeholders regarding data sharing protocols with other states and the potential for misuse of sensitive health information. Overall, the bill addresses a pressing public health need but requires careful implementation to address privacy concerns.