Massachusetts 2023-2024 Regular Session

Massachusetts House Bill H4567 Compare Versions

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1	1	HOUSE . . . . . . . . No. 4567
2	2	The Commonwealth of Massachusetts
3	3	________________________________________
4	4	HOUSE OF REPRESENTATIVES , April 22, 2024.
5	5	The committee on Public Health, to whom was referred the petition
6	6	(accompanied by bill, House, No. 3614) of Edward F. Coppinger and
7	7	Adam Scanlon relative to the Parkinson’s disease registry and improving
8	8	outcomes for individuals with Parkinson’s disease, reports recommending
9	9	that the accompanying bill (House, No. 4567) ought to pass.
10	10	For the committee,
11	11	MARJORIE C. DECKER. 1 of 6
12	12	FILED ON: 4/18/2024
13	13	HOUSE . . . . . . . . . . . . . . . No. 4567
14	14	The Commonwealth of Massachusetts
15	15	_______________
16	16	In the One Hundred and Ninety-Third General Court
17	17	(2023-2024)
18	18	_______________
19	19	An Act to improve outcomes for individuals with Parkinson’s disease.
20	20	Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority
21	21	of the same, as follows:
22	22	1 SECTION 1. Chapter 111 of the General Laws is hereby amended by striking Section
23	23	2243 and inserting in place thereof the following new section: -
24	24	3 Section 243: Parkinson’s disease registry
25	25	4 (a)As used in this section, the following words shall, unless the context clearly
26	26	5requires otherwise, have the following meanings:
27	27	6 “Parkinson’s disease”, a chronic and progressive neurologic disorder resulting from
28	28	7deficiency of the neurotransmitter dopamine as the consequence of specific degenerative changes
29	29	8in the area of the brain called the basal ganglia. It is characterized by tremor at rest, slow
30	30	9movements, muscle rigidity, stooped posture, and unsteady or shuffling gait.
31	31	10 “Parkinsonisms”, related conditions that causes a combination of the movement
32	32	11abnormalities seen in Parkinson's disease — such as tremor at rest, slow movement, muscle
33	33	12rigidity, impaired speech or muscle stiffness — which often overlap with and can evolve from 2 of 6
34	34	13what appears to be Parkinson’s disease. Example Parkinsonisms of particular interest include,
35	35	14but are not exclusive to, the following: Multiple System Atrophy (MSA), Dementia with Lewy
36	36	15Bodies (DLB), Corticobasal Degeneration (CBD), and Progressive Supranuclear Palsy (PSP).
37	37	16 (b)The department shall, subject to appropriation, establish a registry to record cases
38	38	17of Parkinson’s and Parkinsonisms that occur in residents of the commonwealth, and such
39	39	18information concerning these cases as it shall deem necessary and appropriate in order to
40	40	19determine the incidence and prevalence of such diseases.
41	41	20 (c)The registry and system of collection and dissemination of information shall be
42	42	21under the direction of the commissioner, who may enter into contracts, grants or other
43	43	22agreements as are necessary for the conduct of the program.
44	44	23 (d)All patients diagnosed with Parkinson’s disease or related Parkinsonisms shall be
45	45	24provided a notice in writing and orally regarding the collection of information and patient data
46	46	25on Parkinson’s disease and related Parkinsonisms. Patients who do not wish to participate in the
47	47	26collection of data for purposes of research in this registry shall affirmatively opt-out in writing
48	48	27after an opportunity to review the documents and ask questions. No patient shall be forced to
49	49	28participate in this registry. Patients may change their participation status at any time by
50	50	29submitting a request in writing.
51	51	30 (e)The department shall establish a system for the collection and dissemination of
52	52	31information determining the incidence and prevalence of Parkinson’s disease and related
53	53	32Parkinsonisms, as advised by the advisory committee. The department shall designate
54	54	33Parkinson’s disease and related Parkinsonisms as diseases required to be reported in the state or
55	55	34any part of the state. 3 of 6
56	56	35 All cases of Parkinson’s disease and related Parkinsonisms diagnosed or treated in the
57	57	36commonwealth shall be reported to the department. However, the mere incidence of a patient
58	58	37with Parkinson’s disease or a related Parkinsonism shall be the sole required information for this
59	59	38registry for any patient who chooses not to participate. For the subset of patients who choose not
60	60	39to participate, no further data shall be reported to the registry.
61	61	40 The department may create, review and revise a list of data points required as part of
62	62	41mandated Parkinson’s disease reporting under this Section.
63	63	42 i. This list shall include, but not be limited to, necessary triggering diagnostic
64	64	43conditions, consistent with the latest International Statistical Classification of Diseases and
65	65	44Related Health Problems, and resulting case data including, but not limited to, diagnosis,
66	66	45treatment and survival.
67	67	46 ii.The department may implement and administer this subdivision through a
68	68	47bulletin, or similar instruction, to providers without taking regulatory action.
69	69	48 (f)The department shall provide notification of the mandatory reporting of
70	70	49Parkinson’s disease and Parkinsonism on its website and may also provide that information to
71	71	50professional associations representing physicians, nurse practitioners, and hospitals at least 90
72	72	51days prior to requiring information be reported.
73	73	52 (g)Any hospital, facility, physician, surgeon, physician assistant or nurse practitioner
74	74	53who diagnoses or is responsible for providing primary treatment to Parkinson’s disease or
75	75	54Parkinsonism patients shall report each case of Parkinson’s disease and Parkinsonisms, as
76	76	55required by subsection (e), to the department in a format prescribed by the department. The
77	77	56Department shall be authorized to enter into data sharing contracts with data reporting entities 4 of 6
78	78	57and their associated electronic medical record systems vendors to securely and confidentially
79	79	58receive information related to Parkinson’s disease testing, diagnosis and treatment.
80	80	59 (h) The department may enter into agreements to furnish data collected in this registry to
81	81	60other states’ Parkinson’s disease registries, federal Parkinson’s disease control agencies, local
82	82	61health officers, or health researchers for the study of Parkinson’s disease. Before confidential
83	83	62information is disclosed to those agencies, officers, researchers, or out-of-state registries, the
84	84	63requesting entity shall agree in writing to maintain the confidentiality of the information, and in
85	85	64the case of researchers, shall also do both of the following:
86	86	65 i. obtain approval of their committee for the protection of human subjects
87	87	66established in accordance with Part 46 (commencing with Section 46.101) of Title 45 of the
88	88	67Code of Federal Regulations; and
89	89	68 ii.provide documentation to the department that demonstrates to the department’s
90	90	69satisfaction that the entity has established the procedures and ability to maintain the
91	91	70confidentiality of the information.
92	92	71 (i) Except as otherwise provided in this section, all information collected pursuant to this
93	93	72section shall be confidential. For purposes of this section, this information shall be referred to as
94	94	73confidential information. To ensure privacy, the department shall promulgate a coding system
95	95	74that removes any identifying information about the patient.
96	96	75 (j) Notwithstanding any other law, a disclosure authorized by this section shall include
97	97	76only the information necessary for the stated purpose of the requested disclosure, used for the
98	98	77approved purpose, and not be further disclosed. 5 of 6
99	99	78 Provided the security of confidentiality has been documented, the furnishing of
100	100	79confidential information to the department or its authorized representative in accordance with
101	101	80this section shall not expose any person, agency or entity furnishing information to liability, and
102	102	81shall not be considered a waiver of any privilege or a violation of a confidential relationship.
103	103	82 (k) The department shall maintain an accurate record of all persons who are given access
104	104	83to confidential information. The record shall include: the name of the person authorizing access;
105	105	84name, title, address, and organizational affiliation of persons given access; dates of access; and
106	106	85the specific purpose for which information is to be used. The record of access shall be open to
107	107	86public inspection during normal operating hours of the department.
108	108	87 (l) Notwithstanding any other law, confidential information shall not be available for
109	109	88subpoena, shall not be disclosed, discoverable or compelled to be produced in any civil, criminal,
110	110	89administrative or other proceeding. Confidential information shall not be deemed admissible as
111	111	90evidence in any civil, criminal, administrative or other tribunal or court for any reason.
112	112	91 This subsection does not prohibit the publication by the department of reports and
113	113	92statistical compilations that do not in any way identify individual cases or individual sources of
114	114	93information.
115	115	94 Notwithstanding the restrictions in this subsection, the individual to whom the
116	116	95information pertains shall have access to his or her own information.
117	117	96 (m) This section does not preempt the authority of facilities or individuals providing
118	118	97diagnostic or treatment services to patients with Parkinson’s disease or related Parkinsonisms to
119	119	98maintain their own facility-based Parkinson’s disease or Parkinsonisms registries. 6 of 6
120	120	99 SECTION 2. On or before December 21, 2025, and every year thereafter, the Department
121	121	100shall report to the House Committee on Ways and Means, the Senate Committee on Ways and
122	122	101Means, and the Joint Committee on Public Health, a yearly program summary update on the
123	123	102incidence and prevalence of Parkinson’s and related Parkinsonisms in the state by county, how
124	124	103many records have been included and reported into the registry, and demographic information
125	125	104such as patients by age, gender and race. This yearly report shall also be published in a
126	126	105downloadable format on the Department’s webpage or designated Massachusetts Parkinson’s
127	127	106Research Registry webpage.
128	128	107 SECTION 3. The Department shall create and maintain a webpage titled “an overview
129	129	108from the Massachusetts Parkinson’s Research Registry” within the Department’s public
130	130	109information website to allow public access to information related to the registry, a yearly
131	131	110program summary, and any other relevant or helpful information related to the registry This
132	132	111information may be published in any form deemed appropriate by the Department.
133	133	112 This section shall take effect January 1, 2025.