Massachusetts 2023-2024 Regular Session

Massachusetts Senate Bill S1344 Compare Versions

Only one version of the bill is available at this time.

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1	1	1 of 1
2	2	SENATE DOCKET, NO. 803 FILED ON: 1/18/2023
3	3	SENATE . . . . . . . . . . . . . . No. 1344
4	4	The Commonwealth of Massachusetts
5	5	_________________
6	6	PRESENTED BY:
7	7	John J. Cronin
8	8	_________________
9	9	To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General
10	10	Court assembled:
11	11	The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill:
12	12	An Act to improve outcomes for individuals with Parkinson’s disease.
13	13	_______________
14	14	PETITION OF:
15	15	NAME:DISTRICT/ADDRESS :John J. CroninWorcester and Middlesex 1 of 7
16	16	SENATE DOCKET, NO. 803 FILED ON: 1/18/2023
17	17	SENATE . . . . . . . . . . . . . . No. 1344
18	18	By Mr. Cronin, a petition (accompanied by bill, Senate, No. 1344) of John J. Cronin for
19	19	legislation to improve outcomes for individuals with Parkinson’s disease. Public Health.
20	20	The Commonwealth of Massachusetts
21	21	_______________
22	22	In the One Hundred and Ninety-Third General Court
23	23	(2023-2024)
24	24	_______________
25	25	An Act to improve outcomes for individuals with Parkinson’s disease.
26	26	Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority
27	27	of the same, as follows:
28	28	1 SECTION 1. Chapter 111 of the General Laws is hereby amended by striking Section
29	29	2243 and inserting in place thereof the following new section: -
30	30	3 Section 243: Parkinson’s disease registry
31	31	4 (a) As used in this section, the following words shall, unless the context clearly requires
32	32	5otherwise, have the following meanings:
33	33	6 “Parkinson’s disease”, a chronic and progressive neurologic disorder resulting from
34	34	7deficiency of the neurotransmitter dopamine as the consequence of specific degenerative changes
35	35	8in the area of the brain called the basal ganglia. It is characterized by tremor at rest, slow
36	36	9movements, muscle rigidity, stooped posture, and unsteady or shuffling gait.
37	37	10 “Parkinsonisms”, related conditions that causes a combination of the movement
38	38	11abnormalities seen in Parkinson's disease — such as tremor at rest, slow movement, muscle
39	39	12rigidity, impaired speech or muscle stiffness — which often overlap with and can evolve from 2 of 7
40	40	13what appears to be Parkinson’s disease. Example Parkinsonisms of particular interest include,
41	41	14but are not exclusive to, the following: Multiple System Atrophy (MSA), Dementia with Lewy
42	42	15Bodies (DLB), Corticobasal Degeneration (CBD), and Progressive Supranuclear Palsy (PSP).
43	43	16 (a) The department shall establish a Parkinson's disease registry for the collection of
44	44	17information necessary to determine the incidence and prevalence of Parkinson's disease and
45	45	18Parkinsonisms in the commonwealth.
46	46	19 (b) There shall be within the department a Parkinson's disease registry advisory
47	47	20committee to advise and assist in the development, implementation and progress of the
48	48	21Parkinson's disease registry established in subsection (a). The committee shall review and submit
49	49	22recommendations on: (i) what data shall be collected, including, but not limited to, demographic
50	50	23information and data by areas and regions of the commonwealth, with specific data from urban,
51	51	24low and median income communities and minority communities of the commonwealth; (ii) the
52	52	25means of collecting and disseminating such data; (iii) how to ensure privacy and confidentiality
53	53	26of such data; (iv) the purpose, design and functionality of the registry; and (v) the
54	54	27implementation of the registry. The committee shall recommend to the department any
55	55	28information deemed necessary and appropriate for the statistical identification and planning for
56	56	29treatment and education of health care providers and persons diagnosed with Parkinson's disease.
57	57	30 The committee shall consist of the commissioner, or a designee, and 10 members to be
58	58	31appointed by the commissioner as follows: 3 physicians, 1 of whom shall be a general
59	59	32neurologist, 1 of whom shall be a movement disorder specialist and 1 of whom shall be a
60	60	33primary care physician; 1 health informaticist; 2 population health researchers familiar with
61	61	34registries; 2 Parkinson's disease researchers; and 2 persons diagnosed with Parkinson's disease. 3 of 7
62	62	35The committee shall meet at least bi-annually to assess registry progress and recommend
63	63	36changes.
64	64	37 (c) The registry and system of collection and dissemination of information shall be under
65	65	38the direction of the commissioner, who may enter into contracts, grants or other agreements as
66	66	39are necessary for the conduct of the program.
67	67	40 (d) All patients diagnosed with Parkinson’s disease or related Parkinsonisms, as advised
68	68	41by an Advisory Committee, shall be provided a notice in writing and orally regarding the
69	69	42collection of information and patient data on Parkinson’s disease. Patients who do not wish to
70	70	43participate in the collection of data for purposes of research in this registry shall affirmatively
71	71	44opt-out in writing after an opportunity to review the documents and ask questions. No patient
72	72	45shall be forced to participate in this registry. Patients may change their participation status at any
73	73	46time by submitting a request in writing.
74	74	47 (e) The department shall establish a system for the collection and dissemination of
75	75	48information determining the incidence and prevalence of Parkinson’s disease and related
76	76	49Parkinsonisms, as advised by the advisory committee. The department shall designate
77	77	50Parkinson’s disease and related Parkinsonisms as advised by the advisory committee as diseases
78	78	51required to be reported in the state or any part of the state.
79	79	52 All cases of Parkinson’s disease diagnosed or treated in the commonwealth shall be
80	80	53reported to the department. However, the mere incidence of a patient with Parkinson’s shall be
81	81	54the sole required information for this registry for any patient who chooses not to participate. For
82	82	55the subset of patients who choose not to participate, no further data shall be reported to the
83	83	56registry. 4 of 7
84	84	57 The department may create, review and revise a list of data points required as part of
85	85	58mandated Parkinson’s disease reporting under this Section.
86	86	59 i. This list shall include, but not be limited to, necessary triggering diagnostic conditions,
87	87	60consistent with the latest International Statistical Classification of Diseases and Related Health
88	88	61Problems, and resulting case data including, but not limited to, diagnosis, treatment and survival.
89	89	62 ii. The department may implement and administer this subdivision through a bulletin, or
90	90	63similar instruction, to providers without taking regulatory action.
91	91	64 (f) The department shall provide notification of the mandatory reporting of Parkinson’s
92	92	65disease and Parkinsonism on its website and may also provide that information to professional
93	93	66associations representing physicians, nurse practitioners, and hospitals at least 90 days prior to
94	94	67requiring information be reported.
95	95	68 (g) Any hospital, facility, physician, surgeon, physician assistant or nurse practitioner
96	96	69who diagnoses or is responsible for providing primary treatment to Parkinson’s disease or
97	97	70Parkinsonism patients shall report each case of Parkinson’s disease and Parkinsonisms, as
98	98	71required by subsection (e), to the department in a format prescribed by the department. The
99	99	72Department shall be authorized to enter into data sharing contracts with data reporting entities
100	100	73and their associated electronic medical record systems vendors to securely and confidentially
101	101	74receive information related to Parkinson’s disease testing, diagnosis and treatment.
102	102	75 (h) The department may enter into agreements to furnish data collected in this registry to
103	103	76other states’ Parkinson’s disease registries, federal Parkinson’s disease control agencies, local
104	104	77health officers, or health researchers for the study of Parkinson’s disease. Before confidential
105	105	78information is disclosed to those agencies, officers, researchers, or out-of-state registries, the 5 of 7
106	106	79requesting entity shall agree in writing to maintain the confidentiality of the information, and in
107	107	80the case of researchers, shall also do both of the following:
108	108	81 i. obtain approval of their committee for the protection of human subjects established in
109	109	82accordance with Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal
110	110	83Regulations; and
111	111	84 ii. provide documentation to the department that demonstrates to the department’s
112	112	85satisfaction that the entity has established the procedures and ability to maintain the
113	113	86confidentiality of the information
114	114	87 (i) Except as otherwise provided in this section, all information collected pursuant to this
115	115	88section shall be confidential. For purposes of this section, this information shall be referred to as
116	116	89confidential information. To ensure privacy, the department shall promulgate a coding system
117	117	90that removes any identifying information about the patient.
118	118	91 (j) Notwithstanding any other law, a disclosure authorized by this section shall include
119	119	92only the information necessary for the stated purpose of the requested disclosure, used for the
120	120	93approved purpose, and not be further disclosed.
121	121	94 i. Provided the security of confidentiality has been documented, the furnishing of
122	122	95confidential information to the department or its authorized representative in accordance with
123	123	96this section shall not expose any person, agency or entity furnishing information to liability, and
124	124	97shall not be considered a waiver of any privilege or a violation of a confidential relationship.
125	125	98 (k) The department shall maintain an accurate record of all persons who are given access
126	126	99to confidential information. The record shall include: the name of the person authorizing access; 6 of 7
127	127	100name, title, address, and organizational affiliation of persons given access; dates of access; and
128	128	101the specific purpose for which information is to be used. The record of access shall be open to
129	129	102public inspection during normal operating hours of the department.
130	130	103 (l) Notwithstanding any other law, confidential information shall not be available for
131	131	104subpoena, shall not be disclosed, discoverable or compelled to be produced in any civil, criminal,
132	132	105administrative or other proceeding. Confidential information shall not be deemed admissible as
133	133	106evidence in any civil, criminal, administrative or other tribunal or court for any reason.
134	134	107 This subsection does not prohibit the publication by the department of reports and
135	135	108statistical compilations that do not in any way identify individual cases or individual sources of
136	136	109information.
137	137	110 Notwithstanding the restrictions in this subsection, the individual to whom the
138	138	111information pertains shall have access to his or her own information.
139	139	112 (m) This section does not preempt the authority of facilities or individuals providing
140	140	113diagnostic or treatment services to patients with Parkinson’s disease to maintain their own
141	141	114facility-based Parkinson’s disease registries.
142	142	115 SECTION 2. On or before December 21, 2024, and every year thereafter, the Department
143	143	116shall report to the House Committee on Ways and Means, the Senate Committee on Ways and
144	144	117Means, and the Joint Committee on Public Health, a yearly program summary update on the
145	145	118incidents and prevalence of Parkinson’s in the state by county, how many records have been
146	146	119included and reported into the registry, and demographic information such as patients by age,
147	147	120gender and race. This yearly report shall also be published in a downloadable format on the
148	148	121Department’s webpage or designated Massachusetts Parkinson’s Research Registry webpage. 7 of 7
149	149	122 SECTION 3. The Department shall create and maintain a webpage titled “an overview
150	150	123from the Massachusetts Parkinson’s Research Registry” within the Department’s public
151	151	124information website to allow public access to information related to the registry, a yearly
152	152	125program summary, and any other relevant or helpful information related to the registry as
153	153	126deemed necessary by the Parkinson’s Disease Registry Advisory Committee. This information
154	154	127may be published in any form deemed appropriate by the Department.
155	155	128 This section will take effect January 1, 2025.