HB952 establishes a Parkinson’s disease research collection database within the State Health Planning and Development Agency (SHPDA). The database is intended to collect and analyze information on the incidence and prevalence of Parkinson’s disease and related parkinsonisms in Hawaii, including diagnosis, treatment, survival, and demographic data. The bill also creates a Parkinson’s disease research collection database advisory committee to guide implementation, determine what data are collected, and advise the agency on the program.
The bill requires hospitals, physicians, physician assistants, advanced practice registered nurses, and other designated health care providers to report Parkinson’s disease and related parkinsonisms cases to SHPDA in a prescribed format. Patients must receive oral and written notice about the database and have the right to opt out of data collection in writing. The agency is authorized to enter contracts, share de-identified data with researchers and other registries under confidentiality safeguards, and implement the program through bulletins rather than formal rulemaking. SHPDA must also create a public webpage by January 1, 2026, and submit annual reports to the Legislature beginning the same date.
The bill would amend chapter 321, Hawaii Revised Statutes, by adding a new part governing Parkinson’s disease research data collection, confidentiality, reporting, and oversight. It also appropriates unspecified general funds for fiscal years 2025-2026 and 2026-2027 to establish and administer the database. Although the bill sets an effective date of July 1, 3000, the substantive changes would create a new state public health data infrastructure for Parkinson’s disease surveillance and research if enacted.
The general sentiment reflected in the available voting history appears supportive: the Senate Health and Human Services Committee passed the measure unanimously, 5-0, with amendments. The bill’s findings frame the proposal as a public health and research initiative aimed at improving understanding of the disease, especially its prevalence in Hawaii and its possible connection to military service and veteran health.
The main points of contention are likely to involve privacy, mandatory reporting, and administrative burden. The bill requires providers to report cases and treatment information, while also creating strict confidentiality rules and an opt-out process for patients. It also raises implementation questions about funding, data-sharing arrangements, and the scope of information collected, though no specific opposition is reflected in the provided transcripts or vote record.
HB952 would add a new statutory part to chapter 321, Hawaii Revised Statutes, creating a Parkinson’s disease research collection database administered by SHPDA. It would impose reporting duties on health care providers, establish confidentiality and data-access rules, create an advisory committee, require a public webpage and annual legislative reports, and authorize data-sharing agreements for research and public health purposes. The bill also includes an appropriation for implementation, thereby affecting both public health administration and state spending.
The available legislative history suggests favorable sentiment toward the bill. The Senate Health and Human Services Committee passed it 5-0 with amendments, indicating broad support for the concept of a state Parkinson’s disease registry and research program. The bill’s findings and purpose section present it as a public health and veteran-health initiative, which likely contributed to the positive reception.
The likely areas of concern are patient privacy, provider reporting obligations, and the administrative complexity of building and maintaining a statewide disease registry. The bill requires mandatory reporting by hospitals and clinicians, but also allows patients to opt out and imposes confidentiality protections, suggesting an effort to balance research needs with privacy. Another possible point of contention is the open-ended appropriation and the use of agency bulletins instead of formal rulemaking, which could raise questions about cost, oversight, and implementation details.