RELATING TO PARKINSON'S DISEASE RESEARCH.

HB952

HOUSE OF REPRESENTATIVES

H.B. NO.

952

THIRTY-THIRD LEGISLATURE, 2025

STATE OF HAWAII

A BILL FOR AN ACT

relating
to parkinson's disease research
.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF HAWAII:

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SECTION 1.
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The
legislature finds that Parkinson's disease is a chronic neurodegenerative
disease that gradually worsens over time.
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Parkinson's disease occurs when the brain cells that produce dopamine, a
neurotransmitter that coordinates movement, become slow, stop working
correctly, or die.
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There is no known
treatment to stop or reverse the progression of Parkinson's disease, nor is
there a cure.
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The legislature also finds
that there are approximately one million people in the United States living
with Parkinson's disease, which is estimated to rise to 1.6 million by
2037.
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At least one hundred ten thousand
veterans in the United States, and between four and seven thousand people in
the State, live with Parkinson's disease.

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The legislature further finds that the
estimated annual national economic burden to society from Parkinson's disease
is $52 billion each year in medical and non-medical expenses.
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That number is expected to exceed $79 billion
by 2037.
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The importance of collecting
critical research data is the first step to better understand who develops
Parkinson's disease and why.

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Accordingly, the purpose of this Act is to
expand the State's understanding of Parkinson's disease to ultimately improve
the lives of those affected, determine incidence and prevalence of Parkinson's
disease more accurately by state, and improve understanding of the link between
Parkinson's disease and military service, since a larger portion of the veteran
community has Parkinson's disease as compared to the general population, by
establishing a Parkinson's disease research collection database within the department
of health.

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SECTION 2.
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Chapter 321, Hawaii Revised Statutes, is amended by adding a new part to
be appropriately designated and to read as follows:

"
Part
.
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parkinson's disease research

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�321-A
.
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Definitions.
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As used in this part:

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"Department"
means the department of health.

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"Director" means the director of health.

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"Parkinsonisms"
means related conditions that cause a combination of the movement abnormalities
seen in Parkinson's disease, such as tremor at rest, slow movement, muscle
rigidity, impaired speech or muscle stiffness that often overlap with and can
evolve from what appears to be Parkinson's disease, such as multiple system atrophy,
dementia with Lewy bodies, corticobasal degeneration, and progressive supranuclear
palsy.

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"Parkinson's
database" means the Parkinson's disease research collection database
established
pursuant to section
321-B.

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"Parkinson's
disease" means a chronic and progressive neurologic disorder resulting
from deficiency of the neurotransmitter dopamine as the consequence of specific
degenerative changes in the area of the brain called the basal ganglia characterized
by tremor at rest, slow movements, muscle rigidity, stooped posture, and
unsteady or shuffling gait.

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"
Parkinson's disease research collection
database advisory committee
" or "advisory committee" means
the
Parkinson's disease research collection database advisory committee

established pursuant to section 321-C.

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�321-B
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Parkinson's disease research collection
database.
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(a)
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There
is established the Parkinson's disease research collection database to be
administered by the department.
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The
Parkinson's database shall house a collection of data on the incidence of
Parkinson's disease in the State and other epidemiological data as defined in
this section.
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The Parkinson's database, system
of collection, and dissemination of information shall be under the direction of
the director.

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(b)
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All patients diagnosed with Parkinson's disease or related Parkinsonisms
shall be provided oral and written notice regarding the collection of
information and patient data on Parkinson's disease and the right to opt-out of
data collection.
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Patient participation
in the Parkinson's database shall be voluntary; provided that patients who do
not wish to participate in the collection of data for purposes of the database
shall affirmatively opt-out in writing.

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(c)
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The department shall:

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(1)
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Establish
a system for collecting and disseminating information determining the incidence
and prevalence of Parkinson's disease and related Parkinsonisms, as advised by
the advisory committee;

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(2)
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Require
that Parkinson's disease and related Parkinsonisms diagnoses and treatment be
reported to the department; provided that, for any patient who does not
participate in the Parkinson's database, the mere incidence of a patient with
Parkinson's disease shall be the sole required information;

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(3)
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Provide
notification of the mandatory reporting of Parkinson's disease and Parkinsonism
on its website, to associations representing physicians and hospitals, and
directly to the Hawaii medical board at least ninety days before requiring the
information to be reported;

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(4)
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Maintain
an accurate record of all persons who are given access to confidential
information from the Parkinson's database, which shall include:

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(A)
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The
name of the person authorizing access;

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(B)
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The
name, title, address, and organizational affiliation of persons given access,
and dates of access; and

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(C)
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The
specific purpose for which information is to be used; and

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(5)
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Promulgate
a coding system that removes any identifying information about the patient.

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(d)
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The department may:

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(1)
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Enter
into contracts, grants, or other agreements necessary for the administration of
the Parkinson's database;

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(2)
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Create,
review, and revise a list of data points required as part of mandated
Parkinson's disease reporting under this section; provided that the list shall
include necessary triggering diagnostic conditions, consistent with the latest
international statistical classification of diseases and related health
problems, and resulting case data including diagnosis, treatment, and survival;

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(3)
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Implement
and administer this part through a bulletin or similar instruction to
providers, which shall be exempt from the rulemaking process pursuant to
chapter 91;

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(4)
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Enter
into data sharing contracts with data reporting entities and their associated
electronic medical record systems vendors to securely and confidentially
receive information related to Parkinson's disease testing, diagnosis, and
treatment; and

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(5)
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Enter
into agreements to furnish data collected in the Parkinson's database to other
states' Parkinson's disease registries, federal Parkinson's disease control
agencies, local health officers, or health researchers for the study of
Parkinson's disease; provided that, before confidential information is
disclosed, the requesting entity shall agree in writing to maintain the
confidentiality of the information, and in the case of health researchers,
shall:

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(A)
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Obtain
approval of their governing committee or institutional review board for the
protection of human subjects established in accordance with Title 45 Code of
Federal Regulations, section 46.101 et seq.; and

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(B)
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Provide
documentation to the department that demonstrates to the department's
satisfaction that the entity has established the procedures and ability to
maintain the confidentiality of the information.

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(e)
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Any hospital, facility, physician, surgeon, physician assistant, nurse
practitioner, or other health care provider deemed necessary by the department,
diagnosing or providing primary clinical treatment for Parkinson's disease or
Parkinsonism patients shall report each case of Parkinson's disease and
Parkinsonisms to the department in a format prescribed by the department.

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(f)
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This section shall not preempt the authority of facilities or
individuals providing diagnostic or treatment services to patients with
Parkinson's disease to maintain its own facility-based Parkinson's database.

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�321-C
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Parkinson's disease research collection database advisory committee
.
�
(a)
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The department shall establish a Parkinson's disease research collection
database advisory committee, which shall consist of an odd number of members,
not less than nine, who shall be appointed by the director and include at least
one of each of the following:

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(1)
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General
neurologist;

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(2)
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Movement
disorder specialist;

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(3)

Primary
care physician;

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(4)
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Physician
informaticist;

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(5)
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Patient
living with Parkinson's disease;

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(6)
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Public
health staff;

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(7)
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Population
health researcher familiar with registries;

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(8)
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Parkinson's
disease researcher; and

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(9)
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Any
other member the department deems appropriate and necessary.

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(b)
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Each
member shall serve for a term of three years; provided that the director shall
initially appoint three or more members to serve for one year; three members to
serve for two years; and three members to serve for three years.
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No member shall serve for more than two
consecutive three-year terms.

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(c)
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Vacancies occurring before the expiration of a member's term shall be
filled by election by the advisory committee.
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Individuals elected to fill a vacancy shall serve only for the remainder
of the unexpired term.

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(d)
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The advisory committee shall appoint from its members a chairperson,
vice chairperson, secretary, treasurer, and other officers that the advisory committee
deems necessary or desirable to carry out its functions.

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(e)
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Members of the advisory committee shall serve without compensation, but
may be reimbursed for the necessary expenses, including travel expenses,
incurred in the performance of their duties.

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(f)
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The advisory committee shall:

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(1)
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Assist
in the development and implementation of the Parkinson's disease research
collection database;

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(2)
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Determine
the types of data that shall be collected; and

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(3)
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Advise
the department.

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�321-D
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Confidentiality of information.
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(a)
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Except as otherwise provided
in this section, all information collected pursuant to this part shall be
confidential.

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(b)
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Notwithstanding any other law to the contrary, a disclosure authorized
by this part shall include only the information necessary for the stated
purpose of the requested disclosure, used for the approved purpose, and shall
not be further disclosed.
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The record of
access shall be open to public inspection during normal operating hours of the
department.

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(c)
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Any person, agency, or entity who complies with this part shall not be
held civilly or criminally liable for providing the information authorized by
this part.

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(d)
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Any
information disclosed pursuant to this part shall not be considered a waiver of
any privilege or a violation of a confidential relationship.

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(e)
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Notwithstanding any other law to the contrary, confidential information
shall not be available for subpoena, disclosed, discoverable, or compelled to
be produced in any civil, criminal, administrative, or other proceeding.
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Confidential information shall not be deemed
admissible as evidence in any civil, criminal, administrative, or other
tribunal or court for any reason.

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(f)
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This section shall not prohibit the department from publishing reports
and statistical compilations that do not identify individual cases or sources
of information.

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(g)
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Notwithstanding the restrictions in this section, the individual to whom
the information pertains shall have access to their own information.

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�321-E
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Database webpage; annual reports.
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(a)
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No later than January 1, 2026, the department
shall create and maintain a Hawaii Parkinson's disease research collection
database webpage, where the public may obtain information related to the
registry established by this part, a yearly program summary, and any other
relevant or helpful information related to the registry as deemed necessary by
the Parkinson's disease research collection database advisory committee.

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(b)
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No later than January 1, 2026, and every year
thereafter, the department shall submit a report to the legislature that
provides a yearly summary update on the incidents and prevalence of Parkinson's
disease in the State by county, the number of records that have been included
and reported in the registry, and the demographic information of patients by
age, gender, and race.
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A copy of the
report shall be made available and posted on the department's webpage
established pursuant to subsection (a)."

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SECTION 3.
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In codifying the new sections added by section 2 of this Act, the
revisor of statutes shall substitute appropriate section numbers for the
letters used in designating the new sections in this Act.

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SECTION 4.
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This Act shall take effect upon its approval.

INTRODUCED BY:

_____________________________

Report Title:

DOH; Parkinson's Disease; Parkinson's Disease Research
Collection Database; Parkinson's Disease Research Collection Database Advisory
Committee; Webpage; Reports

Description:

Establishes
the Parkinson's Disease Research Collection Database to be administered by the
Department of Health, to house a collection of data on the incidence of
Parkinson's disease in the State.
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Establishes the Parkinson's Disease Research Collection Database
Advisory Committee.
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Requires the
Department to create a Parkinson's disease research collection database webpage
by 1/1/2026, and submit annual reports to the Legislature.

The summary description
of legislation appearing on this page is for informational purposes only and is
not legislation or evidence of legislative intent.