Bill Text: HI SB2029 | 2022 | Regular Session | Amended

Hawaii Senate Bill 2029 (Prior Session Legislation)

HI State Legislature page for SB2029

Bill Title: Relating To Parkinson's Disease Research.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Introduced - Dead) 2022-02-09 - Report adopted; Passed Second Reading, as amended (SD 1) and referred to WAM. [SB2029 Detail]

Download: Hawaii-2022-SB2029-Amended.html

THE SENATE	S.B. NO.	2029
THIRTY-FIRST LEGISLATURE, 2022		S.D. 1
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:

SECTION 1. The legislature finds that Parkinson's disease is a chronic neurodegenerative disease that gradually worsens over time. It occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. There is no treatment to slow, stop, or reverse its progression, nor is there a cure. The legislature also finds that there are approximately one million people in the United State living with Parkinson's disease, a number expected to rise to 1.6 million by 2037. An estimated one hundred and ten thousand veterans, nationally, and between four and seven thousand people in Hawaii live with Parkinson's disease.

The legislature further also finds that the estimated annual economic burden to society from Parkinson's disease is $58 billion each year in medical and non-medical expenses. That number is expected to rise to $72 billion by 2037. Half of the expense is paid by the federal government while the economic burden to Hawaii is estimated at $200 to 300 million. The importance of collecting critical research data is the first step to better understand who develops Parkinson's disease and why.

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 with the general population, by:

(1) Establishing the Parkinson's disease research collection database to be administered by the department of health;

(2) Establishing within the department of health a full-time Parkinson's disease coordinator to implement the Parkinson's disease research collection database; and

(3) Appropriating funds to establish the Parkinson's disease coordinator position and for other operating expenses.

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

"Part

§321-A Parkinson's disease research collection database. (a) There is established the Parkinson's disease research collection database within the department of health. The 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. The database, system of collection, and dissemination of information shall be under the direction of the director of health.

(b) 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. Patient participation in the Parkinson's disease research collection database is 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.

(1) 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 established pursuant to section 321-B;

(2) 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;

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

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

(A) The name of the person authorizing access;

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

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

(d) The department may:

(1) Enter into contracts, grants, or other agreements necessary for the administration of the program;

(2) 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;

(3) Implement and administer this part through a bulletin, or similar instruction, to providers without promulgating rules pursuant to chapter 91;

(4) 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 testing, diagnosis, and treatment; and

(5) Enter into agreements to furnish data collected in the Parkinson's database to other states' Parkinson's registries, federal Parkinson's control agencies, local health officers, or health researchers for the study of Parkinson's; 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:

(A) Obtain approval of their governing committee or institutional review board for the protection of human subjects established in accordance with Part 46 (commencing with section 46.101) of Title 45 of the Code of Federal Regulations; and

(B) 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.

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

(f) 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.

(g) For the purposes of this section:

"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.

"Parkinson's database" means the Parkinson's disease research collection database established by this section.

"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.

§321-B Parkinson's disease research collection database advisory committee. (a) The department shall establish a Parkinson's disease research collection database advisory committee, whose members shall be appointed by the director of health consisting of one representative from at least the following:

(1) General neurologist;

(2) Movement disorder specialist;

(3) Primary care physician;

(4) Physician informaticist;

(5) Parkinson's disease patient;

(6) Public health staff;

(7) Population health researchers familiar with registries;

(8) Parkinson's disease researcher; and

(9) Other parties as the department deems necessary.

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

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

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

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

(f) The committee shall:

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

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

(3) Advise the department of health.

§321-C Confidentiality of information. (a) Except as otherwise provided in this section, all information collected pursuant to this part shall be confidential to the extent it is identifiable by individual case or source.

(b) 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. The record of access shall be open to public inspection during normal operating hours of the department of health.

(c) 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.

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

(e) 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. Confidential information shall not be deemed admissible as evidence in any civil, criminal, administrative or other tribunal or court for any reason.

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

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

SECTION 3. 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.

SECTION 4. There is established within the department of health a full-time Parkinson's disease coordinator to implement the purposes of this Act. The Parkinson's disease coordinator shall be equivalent to a program specialist VI and shall be selected by the director of health or the director's designee.

SECTION 5. There is appropriated out of the general revenues of the State of Hawaii the sum of $165,000 or so much thereof as may be necessary for fiscal year 2022-2023 for the establishment of one full-time equivalent (1.0 FTE) permanent civil service Parkinson's disease coordinator and other operating expenses to carry out its activities pursuant to this Act.

The sum appropriated shall be expended by the department of health for the purposes of this Act.

SECTION 6. This Act shall take effect on January 1, 2050.

Report Title:

Parkinson's disease; Parkinson's Disease Research Collection Database; Appropriation

Description:

Establishes the Parkinson's Disease Research Collection Database to be administered by the Department of Health. Establishes within the Department of Health a full-time Parkinson's disease coordinator to implement the Parkinson's Disease Research Collection Database. Appropriations funds to establish one full-time equivalent (1.0 FTE) permanent civil service Parkinson's disease coordinator and for other operating expenses. Effective 1/1/2050. (SD1)

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