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SB 1049

Relating to cannabis.

2025 Regular Session Introduced by David Smith

Hawaii creates a state Parkinson's disease research database (DOH) to track incidence/prevalence; providers report cases, patients may opt out, data is de-identified for researchers.

In committee upon adjournment.
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Bill Summary · SB 1049

SB 1049 — Parkinson’s Disease Research Collection Database (Hawaii) — Summary

Note: The document provided included unrelated text from other states (Arizona, Illinois). This summary focuses on the primary Hawaii measure reflected in the “Senate Amendments to S.B. 1049” portion, sponsored by Keohokalole, Rhoads, Aquino, McKelvey, Lee, and Chang. The Governor signed the bill 6/20/2025; it is effective 9/1/2025.

Purpose and intent

To establish a statewide Parkinson’s disease research collection database within the Department of Health to improve understanding of Parkinson’s disease and related “parkinsonisms,” determine incidence and prevalence in the state, support research (including links to military service and veterans), and facilitate public‑health planning and prevention efforts.

Key provisions

  • Definitions: Establishes terms including “Parkinson’s disease,” “parkinsonisms,” “department,” “director,” and “Parkinson’s database.”
  • Creation of database (Section 321‑B):
    • Department of Health will administer a Parkinson’s disease research collection database to house incidence, prevalence, and other epidemiological data.
    • The department must establish collection and dissemination systems and promulgate a patient data coding system that removes identifying information.
  • Patient notice and opt‑out:
    • Patients diagnosed with Parkinson’s disease or related parkinsonisms must be provided oral and written notice about data collection and their right to opt out.
    • Participation is voluntary; non‑participating patients must affirmatively opt out in writing.
  • Mandatory reporting by providers:
    • Hospitals, facilities, physicians, physician assistants, nurse practitioners and other designated providers diagnosing or providing primary clinical treatment must report each case in a department‑prescribed format.
    • For patients who opt out, only the mere incidence (i.e., existence of a case) is required to be reported.
  • Data handling, confidentiality and access:
    • The department must keep an access log recording who accessed confidential data, their affiliation, dates, and purposes.
    • Data sharing with other states, federal agencies, local health officers, or researchers is allowed, but recipients must agree in writing to maintain confidentiality.
    • Researchers must have Institutional Review Board (IRB) or equivalent human subjects protection approval and demonstrate adequate confidentiality protections.
  • Administrative authority:
    • Department may enter contracts, grants, or agreements; create/revise required data points (including diagnostic triggers consistent with the latest ICD codes); and implement the program via bulletin exempt from formal rulemaking.
  • Nonpreemption and facility databases:
    • This law does not preempt existing facility‑based Parkinson’s databases maintained by providers.

Who is affected

  • Patients diagnosed with Parkinson’s disease or parkinsonisms in Hawaii (notice and opt‑out rights).
  • Health care providers and facilities (reporting obligations).
  • Department of Health (administration, data security, reporting, contracting).
  • Researchers, public health officials, other states/federal partners (access to de‑identified data under safeguards).
  • Veteran community — bill is intended to help assess links between military service and Parkinson’s.

Timeline and procedural notes

  • Governor signed: June 20, 2025.
  • Effective date: September 1, 2025.
  • The law authorizes the department to implement procedures (including data lists and formats) by bulletin, which is exempt from the standard rulemaking process.

Potential impacts

  • Public health: better state-level incidence/prevalence estimates, improved surveillance, and enhanced research capacity.
  • Research: easier data access for approved studies, including evaluation of veteran associations.
  • Privacy/administration: introduces new reporting burdens for providers and requires robust data security and confidentiality procedures; will require departmental resources and possible contracting to implement.

Compiled from official sources — confirm details with the bill’s official record.

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