S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   4674
 
                        2023-2024 Regular Sessions
 
                             I N  S E N A T E
 
                             February 13, 2023
                                ___________
 
 Introduced  by Sen. HOYLMAN-SIGAL -- read twice and ordered printed, and
   when printed to be committed to the Committee on Health
 
 AN ACT to amend the public health law, in  relation  to  establishing  a
   state Parkinson's disease registry
 
   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section 1. Article 2 of the public health law is amended by  adding  a
 new title 9 to read as follows:
                                 TITLE IX
                    STATE PARKINSON'S DISEASE REGISTRY
 SECTION 269-A. DEFINITIONS.
         269-B. REGISTRY ESTABLISHED.
         269-C. REPORTS.
         269-D. NEW  YORK  STATE  PARKINSON'S  DISEASE  RESEARCH REGISTRY
                  WEBSITE.
   § 269-A. DEFINITIONS. FOR THE PURPOSES OF THIS TITLE:
   1. "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. IT IS CHARACTERIZED BY TREMOR AT REST,
 SLOW MOVEMENTS, MUSCLE RIGIDITY, STOOPED POSTURE, AND UNSTEADY OR  SHUF-
 FLING GAIT.
   2.  "PARKINSONISMS"  MEANS RELATED CONDITIONS THAT CAUSE A COMBINATION
 OF THE MOVEMENT ABNORMALITIES SEEN IN PARKINSON'S DISEASE, SUCH AS TREM-
 OR AT REST, SLOW MOVEMENT, MUSCLE RIGIDITY, IMPAIRED  SPEECH  OR  MUSCLE
 STIFFNESS,  WHICH OFTEN OVERLAP WITH AND CAN EVOLVE FROM WHAT APPEARS TO
 BE PARKINSON'S DISEASE. PARKINSONISMS INCLUDE, BUT ARE NOT EXCLUSIVE TO,
 THE FOLLOWING: MULTIPLE SYSTEM ATROPHY (MSA), DEMENTIA WITH LEWY  BODIES
 (DLB),  CORTICOBASAL  DEGENERATION  (CBD),  AND PROGRESSIVE SUPRANUCLEAR
 PALSY (PSP).

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD08983-01-3
 S. 4674                             2
              

 
   § 269-B. REGISTRY ESTABLISHED. 1. THE DEPARTMENT SHALL COLLECT DATA ON
 THE INCIDENCE OF PARKINSON'S DISEASE IN THIS STATE AND  OTHER  EPIDEMIO-
 LOGICAL DATA. THE REGISTRY AND SYSTEM OF COLLECTION AND DISSEMINATION OF
 INFORMATION  SHALL  BE  UNDER THE DIRECTION OF THE COMMISSIONER, WHO MAY
 ENTER  INTO  CONTRACTS,  GRANTS OR OTHER AGREEMENTS AS ARE NECESSARY FOR
 THE CONDUCT OF THE REGISTRY.
   2. (A) THE DEPARTMENT SHALL, WITHIN NINETY DAYS OF THE EFFECTIVE  DATE
 OF  THIS  SECTION,  ESTABLISH  A  PARKINSON'S  DISEASE REGISTRY ADVISORY
 COMMITTEE TO ASSIST IN THE DEVELOPMENT AND IMPLEMENTATION OF THE  REGIS-
 TRY;  DETERMINE  WHAT DATA SHALL BE COLLECTED; AND GENERALLY, ADVISE THE
 DEPARTMENT.
   (B) THE COMMISSIONER  SHALL  SELECT  THE  MEMBERS  OF  THE  COMMITTEE.
 MEMBERSHIP OF THE COMMITTEE SHALL INCLUDE:
   (I) A NEUROLOGIST;
   (II) A MOVEMENT DISORDER SPECIALIST;
   (III) A PRIMARY CARE PROVIDER;
   (IV) A PHYSICIAN INFORMATICIST;
   (V) A PATIENT LIVING WITH PARKINSON'S DISEASE;
   (VI) A PUBLIC HEALTH PROFESSIONAL;
   (VII) A POPULATION HEALTH RESEARCHER FAMILIAR WITH REGISTRIES;
   (VIII) A PARKINSON'S DISEASE RESEARCHER; AND
   (IX) ANYONE ELSE THE COMMISSIONER DEEMS NECESSARY.
   3.  (A) THE DEPARTMENT SHALL DESIGNATE PARKINSON'S DISEASE AND RELATED
 PARKINSONISMS AS ADVISED BY THE ADVISORY COMMITTEE AS DISEASES  REQUIRED
 TO BE REPORTED IN THE STATE OR ANY PART OF THE STATE.
   (B)  THE  DEPARTMENT  SHALL  ESTABLISH A SYSTEM FOR THE COLLECTION AND
 DISSEMINATION OF INFORMATION DETERMINING THE INCIDENCE AND PREVALENCE OF
 PARKINSON'S DISEASE AND RELATED PARKINSONISMS, AS ADVISED BY  THE  ADVI-
 SORY COMMITTEE.
   (C)  ALL  CASES  OF  PARKINSON'S  DISEASE DIAGNOSED OR TREATED IN THIS
 STATE SHALL BE REPORTED TO THE DEPARTMENT, PROVIDED THE  MERE  INCIDENCE
 OF  A PATIENT WITH PARKINSON'S DISEASE SHALL BE THE SOLE REQUIRED INFOR-
 MATION FOR THIS REGISTRY FOR ANY PATIENT WHO CHOOSES NOT TO PARTICIPATE.
 FOR THE SUBSET OF PATIENTS WHO CHOOSE NOT  TO  PARTICIPATE,  NO  FURTHER
 DATA  SHALL  BE  REPORTED  TO  THE  REGISTRY. THE DEPARTMENT MAY CREATE,
 REVIEW AND REVISE A LIST OF DATA POINTS REQUIRED  AS  PART  OF  MANDATED
 PARKINSON'S  DISEASE  REPORTING  UNDER  THIS  SECTION.  SUCH  LIST SHALL
 INCLUDE, BUT NOT BE LIMITED TO NECESSARY  TRIGGERING  DIAGNOSTIC  CONDI-
 TIONS,  CONSISTENT WITH THE LATEST INTERNATIONAL STATISTICAL CLASSIFICA-
 TION OF DISEASES AND RELATED HEALTH PROBLEMS, AND  RESULTING  CASE  DATA
 INCLUDING,  BUT  NOT  LIMITED TO, DIAGNOSIS, TREATMENT AND SURVIVAL. THE
 DEPARTMENT MAY IMPLEMENT AND ADMINISTER THIS PARAGRAPH THROUGH A  BULLE-
 TIN,  OR  SIMILAR  INSTRUCTION,  TO  PROVIDERS WITHOUT TAKING REGULATORY
 ACTION.
   (D) THE DEPARTMENT SHALL PROVIDE NOTIFICATION OF THE MANDATORY REPORT-
 ING OF PARKINSON'S DISEASE AND PARKINSONISMS ON ITS WEBSITE AND MAY ALSO
 PROVIDE  THAT  INFORMATION  TO  PROFESSIONAL  ASSOCIATIONS  REPRESENTING
 PHYSICIANS,  NURSE  PRACTITIONERS,  AND  HOSPITALS  AT LEAST NINETY DAYS
 PRIOR TO REQUIRING INFORMATION BE REPORTED.
   (E) A HOSPITAL, FACILITY, PHYSICIAN, SURGEON, PHYSICIAN ASSISTANT  AND
 NURSE  PRACTITIONERS  WHO  DIAGNOSE  OR ARE TREATING A PATIENT DIAGNOSED
 WITH PARKINSON'S DISEASE OR PARKINSONISMS AND HAVE PRIMARY  RESPONSIBIL-
 ITY FOR THE TREATMENT AND CARE OF THE PATIENT FOR PARKINSON'S DISEASE OR
 PARKINSONISMS  SHALL REPORT EACH CASE OF PARKINSON'S DISEASE AND PARKIN-
 SONISMS TO THE DEPARTMENT IN A FORMAT PRESCRIBED BY THE DEPARTMENT.  THE
 DEPARTMENT IS AUTHORIZED TO ENTER INTO DATA SHARING CONTRACTS WITH  DATA
 S. 4674                             3
 
 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.
   4.  ALL  PATIENTS DIAGNOSED WITH PARKINSON'S DISEASE OR PARKINSONISMS,
 AS ADVISED BY THE ADVISORY COMMITTEE, SHALL  BE  PROVIDED  A  NOTICE  IN
 WRITING  AND  ORALLY REGARDING THE COLLECTION OF INFORMATION AND PATIENT
 DATA ON PARKINSON'S DISEASE. PATIENTS WHO DO NOT WISH TO PARTICIPATE  IN
 THE  COLLECTION  OF DATA FOR PURPOSES OF RESEARCH IN THIS REGISTRY SHALL
 AFFIRMATIVELY OPT-OUT IN WRITING AFTER  AN  OPPORTUNITY  TO  REVIEW  THE
 DOCUMENTS  AND  ASK QUESTIONS. NO PATIENT SHALL BE FORCED TO PARTICIPATE
 IN THIS REGISTRY.
   5. THE DEPARTMENT MAY ENTER INTO AGREEMENTS TO FURNISH DATA  COLLECTED
 IN THIS REGISTRY TO OTHER STATES' PARKINSON'S DISEASE REGISTRIES, FEDER-
 AL  PARKINSON'S  DISEASE  CONTROL  AGENCIES,  LOCAL  HEALTH OFFICERS, OR
 HEALTH RESEARCHERS FOR THE STUDY OF PARKINSON'S DISEASE.  BEFORE  CONFI-
 DENTIAL  INFORMATION IS DISCLOSED TO THOSE AGENCIES, OFFICERS, RESEARCH-
 ERS, OR OUT-OF-STATE REGISTRIES, THE REQUESTING ENTITY  SHALL  AGREE  IN
 WRITING  TO  MAINTAIN THE CONFIDENTIALITY OF THE INFORMATION, AND IN THE
 CASE OF RESEARCHERS, SHALL ALSO DO BOTH OF THE FOLLOWING:
   (A) OBTAIN APPROVAL OF THEIR COMMITTEE 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.
   6. EXCEPT AS OTHERWISE  PROVIDED  IN  THIS  SECTION,  ALL  INFORMATION
 COLLECTED  PURSUANT  TO THIS SECTION SHALL BE CONFIDENTIAL. FOR PURPOSES
 OF THIS SECTION, THIS INFORMATION SHALL BE REFERRED TO  AS  CONFIDENTIAL
 INFORMATION. TO ENSURE PRIVACY, THE DEPARTMENT SHALL PROMULGATE A CODING
 SYSTEM THAT REMOVES ANY IDENTIFYING INFORMATION ABOUT THE PATIENT.
   7.  (A) NOTWITHSTANDING ANY OTHER LAW, A DISCLOSURE AUTHORIZED BY THIS
 SECTION SHALL INCLUDE ONLY THE  INFORMATION  NECESSARY  FOR  THE  STATED
 PURPOSE  OF THE REQUESTED DISCLOSURE, USED FOR THE APPROVED PURPOSE, AND
 NOT BE FURTHER DISCLOSED.
   (B) PROVIDED THE SECURITY OF CONFIDENTIALITY HAS BEEN DOCUMENTED,  THE
 FURNISHING  OF CONFIDENTIAL INFORMATION TO THE DEPARTMENT OR ITS AUTHOR-
 IZED REPRESENTATIVE IN ACCORDANCE WITH THIS SECTION SHALL NOT EXPOSE ANY
 PERSON, AGENCY OR ENTITY FURNISHING INFORMATION TO LIABILITY, AND  SHALL
 NOT  BE  CONSIDERED A WAIVER OF ANY PRIVILEGE OR A VIOLATION OF A CONFI-
 DENTIAL RELATIONSHIP.
   (C) THE DEPARTMENT SHALL MAINTAIN AN ACCURATE RECORD  OF  ALL  PERSONS
 WHO  ARE  GIVEN  ACCESS  TO  CONFIDENTIAL  INFORMATION. THE RECORD SHALL
 INCLUDE:   THE NAME OF  THE  PERSON  AUTHORIZING  ACCESS;  NAME,  TITLE,
 ADDRESS,  AND  ORGANIZATIONAL AFFILIATION OF PERSONS GIVEN ACCESS; DATES
 OF ACCESS; AND THE SPECIFIC PURPOSE FOR WHICH INFORMATION IS TO BE USED.
 THE RECORD OF ACCESS SHALL BE OPEN TO PUBLIC  INSPECTION  DURING  NORMAL
 OPERATING HOURS OF THE DEPARTMENT.
   (D)  NOTWITHSTANDING ANY OTHER LAW, CONFIDENTIAL INFORMATION SHALL NOT
 BE AVAILABLE FOR SUBPOENA,  SHALL  NOT  BE  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.
   (E)  THIS SUBDIVISION DOES NOT PROHIBIT THE PUBLICATION BY THE DEPART-
 MENT OF REPORTS AND STATISTICAL COMPILATIONS THAT  DO  NOT  IN  ANY  WAY
 IDENTIFY INDIVIDUAL CASES OR INDIVIDUAL SOURCES OF INFORMATION.
 S. 4674                             4
 
   (F) NOTWITHSTANDING THE RESTRICTIONS IN THIS SUBDIVISION, THE INDIVID-
 UAL TO WHOM THE INFORMATION PERTAINS SHALL HAVE ACCESS TO HIS OR HER OWN
 INFORMATION.
   8.  THIS SECTION DOES NOT PREEMPT THE AUTHORITY OF FACILITIES OR INDI-
 VIDUALS PROVIDING DIAGNOSTIC OR  TREATMENT  SERVICES  TO  PATIENTS  WITH
 PARKINSON'S  DISEASE  TO  MAINTAIN  THEIR OWN FACILITY-BASED PARKINSON'S
 DISEASE REGISTRIES.
   § 269-C. REPORTS. ON OR BEFORE JANUARY  FIRST,  TWO  THOUSAND  TWENTY-
 FIVE,  AND  EVERY  YEAR  THEREAFTER,  THE DEPARTMENT SHALL REPORT TO THE
 LEGISLATURE AND GOVERNOR A YEARLY PROGRAM SUMMARY UPDATE  ON  THE  INCI-
 DENCE  AND PREVALENCE OF PARKINSON'S DISEASE IN THE STATE BY COUNTY, HOW
 MANY RECORDS HAVE BEEN INCLUDED AND  REPORTED  INTO  THE  REGISTRY,  AND
 DEMOGRAPHIC  INFORMATION  SUCH AS PATIENTS BY AGE, GENDER AND RACE. THIS
 YEARLY REPORT SHALL ALSO BE PUBLISHED IN A DOWNLOADABLE  FORMAT  ON  THE
 DEPARTMENT'S  WEBSITE  OR  THE  DESIGNATED  NEW  YORK  STATE PARKINSON'S
 DISEASE RESEARCH REGISTRY WEBSITE.
   § 269-D. NEW YORK STATE PARKINSON'S DISEASE RESEARCH REGISTRY WEBSITE.
 ON OR BEFORE JANUARY FIRST, TWO  THOUSAND  TWENTY-FIVE,  THE  DEPARTMENT
 SHALL  CREATE  AND  MAINTAIN  A  WEBPAGE  CALLED  THE  "NEW  YORK  STATE
 PARKINSON'S DISEASE RESEARCH REGISTRY" WHERE THE PUBLIC MAY VIEW  INFOR-
 MATION  RELATED TO THE REGISTRY, A YEARLY PROGRAM SUMMARY, AND ANY OTHER
 RELEVANT OR HELPFUL INFORMATION RELATED TO THE REGISTRY AS DEEMED NECES-
 SARY BY THE ADVISORY COUNCIL.
   § 2. This act shall take effect on the thirtieth day  after  it  shall
 have become a law.