RELATING TO PARKINSON'S DISEASE RESEARCH.
SB1049 would create a Parkinson’s disease research collection database within the Hawaii Department of Health. The database would collect information on the incidence and prevalence of Parkinson’s disease and related Parkinsonisms in the state, with reporting from hospitals, physicians, and other specified health care providers. Patients diagnosed with Parkinson’s disease or related conditions would receive notice and have the ability to opt out of participation in the database, while nonparticipants would still be counted at a basic incidence level.
The bill also establishes a Parkinson’s disease research collection database advisory committee to help design and oversee the registry, including members such as neurologists, a movement disorder specialist, a primary care physician, a patient living with Parkinson’s disease, public health staff, and researchers. The Department of Health would be authorized to enter into data-sharing agreements, contracts, and grants, and to share de-identified information with other registries, public health agencies, and approved researchers under confidentiality safeguards. The department would also be required to create a public webpage by January 1, 2026, and submit annual reports to the Legislature on county-level incidence and prevalence, registry participation, and demographic data.
SB1049 would add a new part to chapter 321, Hawaii Revised Statutes, creating a state-run Parkinson’s disease registry and related reporting, confidentiality, and oversight provisions. It would impose new reporting duties on health care providers and hospitals, require the Department of Health to maintain a coding system that removes identifying information, and establish statutory limits on disclosure, subpoena, and evidentiary use of registry data. The bill would also require annual public reporting and legislative updates, affecting the Department of Health, providers diagnosing or treating Parkinson’s disease, patients, researchers, and other entities that may access registry data.
The available context suggests generally supportive, public-health-oriented sentiment around the bill, with the measure framed as a research and data-collection tool to improve understanding of Parkinson’s disease in Hawaii. The bill’s findings emphasize the disease burden, the lack of a cure, and the potential value of better incidence and prevalence data, especially regarding veterans and possible service-related connections. No committee transcript or recorded votes were provided, so there is no direct evidence of opposition or debate in the supplied materials.
The main points of potential contention are privacy, reporting burden, and data use. The bill requires mandatory reporting by providers while also allowing patients to opt out of full participation, which may raise questions about patient consent and administrative implementation. It also creates broad confidentiality protections but permits data sharing with researchers and other agencies under specified conditions, which could prompt concern about how securely information is handled and who may access it. Another possible issue is the operational burden on hospitals, physicians, and the Department of Health in building and maintaining the registry and reporting system.