Bill Text: NY A04983 | 2023-2024 | General Assembly | Amended

NOTE: There are more recent revisions of this legislation. Read Latest Draft
Bill Title: Provides for the protection of health information; establishes requirements for communications to individuals about their health information; requires either written consent or a designated necessary purpose for the processing of an individual's health information.

Spectrum: Partisan Bill (Democrat 29-0)

Status: (Introduced) 2024-06-03 - substituted by s158e [A04983 Detail]

Download: New_York-2023-A04983-Amended.html



                STATE OF NEW YORK
        ________________________________________________________________________

                                         4983--A

                               2023-2024 Regular Sessions

                   IN ASSEMBLY

                                    February 27, 2023
                                       ___________

        Introduced  by  M.  of  A.  L. ROSENTHAL,  CUNNINGHAM  --  read once and
          referred to the Committee  on  Science  and  Technology  --  committee
          discharged, bill amended, ordered reprinted as amended and recommitted
          to said committee

        AN  ACT  to amend the general business law, in relation to providing for
          the protection of health information

          The People of the State of New York, represented in Senate and  Assem-
        bly, do enact as follows:

     1    Section 1. The general business law is amended by adding a new article
     2  42 to read as follows:
     3                                 ARTICLE 42
     4                   NEW YORK HEALTH INFORMATION PRIVACY ACT
     5  Section 1100. Definitions.
     6          1101. Requirements for communications to individuals.
     7          1102. Lawfulness of processing regulated health information.
     8          1103. Individual rights.
     9          1104. Security.
    10          1105. Service providers.
    11          1106. Exemptions.
    12          1107. Enforcement.
    13    §  1100.  Definitions.  As  used  in this article, the following terms
    14  shall have the following meanings:
    15    1. "Deidentified information" means information that cannot reasonably
    16  be used to infer information about, or otherwise be linked to a  partic-
    17  ular individual, household, or device, provided that the regulated enti-
    18  ty or service provider that processes the information:
    19    (a)  Implements  reasonable  technical  safeguards  to ensure that the
    20  information cannot be  associated  with  an  individual,  household,  or
    21  device;
    22    (b)  Publicly  commits to process the information only as deidentified
    23  information and not attempt to reidentify the information,  except  that

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD01105-02-3

        A. 4983--A                          2

     1  the  regulated  entity or service provider may attempt to reidentify the
     2  information solely for the purpose of determining  whether  its  deiden-
     3  tification processes satisfy the requirements of this section; and
     4    (c) Contractually obligates any recipient of the deidentified informa-
     5  tion to comply with all requirements of this section.
     6    2.  "Regulated  health information" means any information that relates
     7  to an individual or a device that is reasonably linkable to an  individ-
     8  ual or individuals in connection with physical or mental health. For the
     9  avoidance  of  doubt, location or payment information that relates to an
    10  individual's physical or mental health or any inference drawn or derived
    11  data about an individual or a device that is reasonably linkable  to  an
    12  individual  or  individuals that relates to physical or mental health is
    13  regulated health information.  Regulated  health  information  does  not
    14  include deidentified information.
    15    3.  "Process"  or "processing" means an operation or set of operations
    16  performed on regulated health information, including but not limited  to
    17  the  collection,  use,  access,  sharing,  sale, monetization, analysis,
    18  retention, creation, generation,  derivation,  recording,  organization,
    19  structuring,  storage,  disclosure,  transmission,  disposal, licensing,
    20  destruction, deletion, modification, or  deidentification  of  regulated
    21  health information.
    22    4.  "Regulated entity" means any entity that (a) controls the process-
    23  ing of regulated health information of an individual who is a  New  York
    24  resident, (b) controls the processing of regulated health information of
    25  an  individual who is physically present in New York while that individ-
    26  ual is in New York, or (c) is located in New York and controls the proc-
    27  essing of regulated health information of  an  individual.  A  regulated
    28  entity  may  also  be  a  service provider depending upon the context in
    29  which regulated health information is processed.
    30    5. "Sell" means to share regulated health information for monetary  or
    31  other  valuable  consideration.  Selling does not include the sharing of
    32  regulated health information for monetary or  other  valuable  consider-
    33  ation  to  a  third party as an asset that is part of a merger, acquisi-
    34  tion, bankruptcy, or other transaction in which the third party  assumes
    35  control of all or part of the regulated entity's assets.
    36    6.  "Service provider" means any person or entity that processes regu-
    37  lated health information on behalf of  a  regulated  entity.  A  service
    38  provider  may  also  be a regulated entity depending upon the context in
    39  which regulated health information is processed.
    40    7. "Third party" means a person or entity other than  the  individual,
    41  regulated  entity,  or  service  provider  involved  in a transaction or
    42  occurrence that involves regulated health information. A third party may
    43  also be a regulated  entity  or  service  provider  depending  upon  the
    44  context in which regulated health information is processed.
    45    §  1101.  Requirements for communications to individuals. All notices,
    46  disclosures, forms, and other  communications  to  individuals  provided
    47  pursuant to this article shall comply with the following:
    48    1.  In  general,  all  communications shall use plain, straightforward
    49  language, avoiding technical or  legal  jargon,  and  must  be  provided
    50  through  an  interface  regularly used in conjunction with the regulated
    51  entity's product or service.
    52    2. All communications shall be reasonably  accessible  to  individuals
    53  with disabilities, including by:
    54    (a) utilizing digital accessibility tools;
    55    (b)  for  notices, complying with generally recognized industry stand-
    56  ards, including, but not  limited  to,  the  Web  Content  Accessibility

        A. 4983--A                          3

     1  Guidelines,  version 2.1 of June 5, 2018, from the World Web Consortium,
     2  incorporated herein by reference; and
     3    (c) for other communications, providing information about how an indi-
     4  vidual  with a disability may access the communication in an alternative
     5  format.
     6    3. All communications shall be available in the languages in which the
     7  regulated entity provides information via its website and services.  Any
     8  direct  communication to an individual shall be provided in the language
     9  in which the individual ordinarily interacts with the  regulated  entity
    10  or its service provider.
    11    4. A regulated entity shall make any notice for processing pursuant to
    12  a permissible purpose, pursuant to subparagraph (ii) of paragraph (b) of
    13  subdivision  one  of section eleven hundred two of this article, or form
    14  for processing pursuant to authorization, pursuant to  subparagraph  (i)
    15  of  paragraph  (b)  of  subdivision one of section eleven hundred two of
    16  this article, publicly available on its  website.  If  an  authorization
    17  form is customized for each individual, the regulated entity may instead
    18  publicly post a sample authorization form on its website.
    19    §  1102. Lawfulness of processing regulated health information.  1. In
    20  general, it shall be unlawful for a regulated entity to:
    21    (a) sell an individual's  regulated  health  information  to  a  third
    22  party; or
    23    (b)  otherwise  process  an  individual's regulated health information
    24  unless:
    25    (i) The individual has provided valid authorization for such  process-
    26  ing; or
    27    (ii)  Processing  of  an  individual's regulated health information is
    28  strictly necessary for the purpose of:
    29    (A) providing a product or service requested by such individual;
    30    (B) conducting the regulated entity's  internal  business  operations,
    31  which exclude any activities related to marketing, advertising, research
    32  and development, or providing products or services to third parties;
    33    (C) protecting against malicious, fraudulent, or illegal activity;
    34    (D)  detecting,  responding  to,  or  preventing security incidents or
    35  threats;
    36    (E) protecting the vital interests of  an  individual  or  the  public
    37  interest in the area of public health;
    38    (F) investigating, establishing, exercising, preparing for, or defend-
    39  ing legal claims; or
    40    (G) complying with the regulated entity's legal obligations.
    41    2.  A  regulated  entity  that  processes regulated health information
    42  pursuant to valid authorization as required by subparagraph (i) of para-
    43  graph (b) of subdivision one of  this  section  shall  comply  with  the
    44  following:
    45    (a)  A  request for authorization to process an individual's regulated
    46  health information shall:
    47    (i) be made separately from any other transaction or part of a  trans-
    48  action;
    49    (ii) be made at least twenty-four hours after an individual creates an
    50  account or first uses the requested product or service;
    51    (iii)  be made in the absence of any mechanism that has the purpose or
    52  substantial effect of obscuring, subverting, or  impairing  an  individ-
    53  ual's decision-making regarding authorization for processing;
    54    (iv) if requesting authorization for multiple categories of processing
    55  activities, allow the individual to provide/withhold authorization sepa-
    56  rately for each category of processing activity; and

        A. 4983--A                          4

     1    (v)  not include any request for authorization for a processing activ-
     2  ity for which an individual has withheld or revoked authorization within
     3  the past calendar year.
     4    (b) A valid authorization shall include:
     5    (i) the types of regulated health information to be processed;
     6    (ii) the nature of the processing activity;
     7    (iii) the specific purposes for such processing;
     8    (iv)  the  names  where  readily  available,  or categories of service
     9  providers and third parties to which the regulated entity  may  disclose
    10  the  individual's regulated health information and the purposes for such
    11  disclosure, including the circumstances under which the regulated entity
    12  may disclose regulated health information to law enforcement;
    13    (v) any monetary or other valuable consideration the regulated  entity
    14  may  receive  in  connection  with processing the individual's regulated
    15  health information, where applicable;
    16    (vi) that failing to provide authorization will not affect  the  indi-
    17  vidual's   experience  of  using  the  regulated  entity's  products  or
    18  services;
    19    (vii) the expiration date of the authorization, which may be up to one
    20  year from the date authorization was provided;
    21    (viii) the mechanism by which the individual may revoke  authorization
    22  prior to expiration;
    23    (ix)  the  mechanism by which the individual may request access to and
    24  deletion of their regulated health information;
    25    (x) any other information material to an individual's  decision-making
    26  regarding authorization for processing; and
    27    (xi)  the signature, which may be electronic, of the individual who is
    28  the subject of the regulated health information, or a parent or guardian
    29  authorized by law to take actions of legal consequence on behalf of  the
    30  individual  who  is the subject of the regulated health information, and
    31  the date.
    32    (c) (i) A regulated entity that receives authorization for  processing
    33  shall  provide  an  effective,  efficient,  and easy-to-use mechanism by
    34  which an individual may revoke authorization  at  any  time  through  an
    35  interface  regularly  used  in  conjunction  with the regulated entity's
    36  product or service.
    37    (ii) Upon an individual's revocation of authorization,  the  regulated
    38  entity  shall  immediately  cease  all  processing  activities for which
    39  authorization was revoked, except to the extent necessary to comply with
    40  the regulated entity's legal obligations.
    41    (iii) For individuals who have an online account  with  the  regulated
    42  entity,  the  regulated entity must provide, in a conspicuous and easily
    43  accessible place within the account settings, a list of  all  processing
    44  activities  for which the individual has provided authorization and, for
    45  each processing activity, allow the individual to  revoke  authorization
    46  in the same place with one motion or action.
    47    (d)  Upon  obtaining valid authorization from an individual, the regu-
    48  lated entity shall provide that individual a copy of the  authorization.
    49  The authorization shall be provided in a manner that is capable of being
    50  retained by the individual.
    51    (e) The regulated entity shall limit its processing to what was clear-
    52  ly disclosed to an individual pursuant to paragraph (b) of this subdivi-
    53  sion  when the regulated entity received authorization from the individ-
    54  ual.
    55    (f) If the regulated entity seeks to materially alter  its  processing
    56  activities  for  regulated  health  information  collected  pursuant  to

        A. 4983--A                          5

     1  authorization, the regulated entity shall obtain a new authorization for
     2  the new or altered processing activity.
     3    (g) Providing a product or service requested by an individual must not
     4  be made contingent on providing authorization. The regulated entity must
     5  not  discriminate  against  an individual for withholding authorization,
     6  such as by charging different prices or rates for products or  services,
     7  including  through  the  use  of  discounts  or other benefits, imposing
     8  penalties, or providing a different level  or  quality  of  services  or
     9  goods to the individual.
    10    3.  A  regulated  entity  that  processes regulated health information
    11  pursuant to a permissible purpose pursuant to subparagraph (ii) of para-
    12  graph (b) of subdivision one of  this  section  shall  comply  with  the
    13  following:
    14    (a) A regulated entity shall provide clear and conspicuous notice that
    15  describes:
    16    (i) the types of regulated health information to be processed;
    17    (ii) the nature of the processing activity;
    18    (iii) the specific purposes for such processing;
    19    (iv)  the  names  where  readily  available,  or categories of service
    20  providers and third parties to which the regulated entity  may  disclose
    21  the  individual's regulated health information and the purposes for such
    22  disclosure, including the circumstances under which the regulated entity
    23  may disclose regulated health information to law enforcement; and
    24    (v) the mechanism by which the individual may request  access  to  and
    25  deletion of their regulated health information.
    26    (b)  If  the  regulated entity materially alters its processing activ-
    27  ities for regulated health information collected pursuant to a permissi-
    28  ble purpose, the regulated entity must provide a clear  and  conspicuous
    29  notice  in  plain  language,  separate  from  a privacy policy, terms of
    30  service, or similar document, that describes any material changes to the
    31  processing activities and provide the individual with an opportunity  to
    32  request deletion of their regulated health information.
    33    § 1103. Individual rights. 1. (a) A regulated entity shall make avail-
    34  able  an  effective,  efficient,  and  easy-to-use  mechanism through an
    35  interface regularly used in  conjunction  with  the  regulated  entity's
    36  product  or  service  by which an individual may request access to their
    37  regulated health information.
    38    (b) Within thirty days of receiving an access request,  the  regulated
    39  entity  shall  make available a copy of all regulated health information
    40  about the individual that the regulated entity maintains or that service
    41  providers maintain on behalf of the regulated entity.
    42    2. (a) A regulated entity shall make  available  an  effective,  effi-
    43  cient,  and easy-to-use mechanism through an interface regularly used in
    44  conjunction with the regulated entity's product or service by  which  an
    45  individual  may  request the deletion of their regulated health informa-
    46  tion.
    47    (b) An individual's deletion or cancellation of their  online  account
    48  shall  be  treated  as  a  request  to delete the individual's regulated
    49  health information.
    50    (c) Within thirty days of receiving a deletion request, the  regulated
    51  entity shall:
    52    (i)  Delete all regulated health information associated with the indi-
    53  vidual in the regulated entity's possession or control,  except  to  the
    54  extent  necessary  to  comply  with  the  regulated entity's legal obli-
    55  gations; and

        A. 4983--A                          6

     1    (ii) Unless it proves impossible or involves  disproportionate  effort
     2  that  is documented in writing by the regulated entity, communicate such
     3  request to each service provider or third party that processed the indi-
     4  vidual's regulated health information in connection with  a  transaction
     5  involving  the  regulated  entity within one year preceding the individ-
     6  ual's request.
     7    (d) Any service provider or third party that  receives  notice  of  an
     8  individual's  deletion request shall within thirty days delete all regu-
     9  lated  health  information  associated  with  the  individual   in   its
    10  possession or control, except to the extent necessary to comply with its
    11  legal obligations.
    12    3. Any right set forth in this section may be exercised at any time by
    13  the individual who is the subject of the regulated health information or
    14  an agent authorized by such individual.
    15    §  1104.  Security.  1.  In general, a regulated entity shall develop,
    16  implement, and maintain reasonable administrative, technical, and  phys-
    17  ical  safeguards to protect the security, confidentiality, and integrity
    18  of regulated health information.
    19    2. A regulated entity must securely dispose of an  individual's  regu-
    20  lated  health  information  pursuant  to  a publicly available retention
    21  schedule within a reasonable time, and in  no  event  later  than  sixty
    22  days,  after  it  is no longer necessary to maintain for the permissible
    23  purpose or purposes identified in the notice or for which the individual
    24  provided valid authorization.
    25    § 1105. Service providers. 1. In general, any processing of  regulated
    26  health information by a service provider on behalf of a regulated entity
    27  shall  be governed by a written, binding agreement. Such agreement shall
    28  clearly set forth instructions for processing regulated health  informa-
    29  tion,  the nature and purpose of processing, the duration of processing,
    30  and the rights and obligations of both parties.
    31    2. An agreement pursuant to subdivision  one  of  this  section  shall
    32  require that the service provider:
    33    (a) ensure that each person processing regulated health information is
    34  subject to a duty of confidentiality with respect to such information;
    35    (b)  protect  regulated health information in a manner consistent with
    36  the requirements of this article;
    37    (c) process regulated health information only when and to  the  extent
    38  necessary to comply with its obligations to the regulated entity;
    39    (d)  not  combine  the  regulated health information which the service
    40  provider receives from or on behalf of the  regulated  entity  with  any
    41  other  personal  information which the service provider receives from or
    42  on behalf of another party or collects from its  own  relationship  with
    43  individuals;
    44    (e)  comply with any exercises of an individual's rights under section
    45  eleven hundred three of this article upon the request of  the  regulated
    46  entity  and  notify  any  service providers or third parties to which it
    47  disclosed regulated health information of the request;
    48    (f) delete or return all regulated health information to the regulated
    49  entity at the end of the provision of services, unless retention of  the
    50  regulated health information is required by law;
    51    (g)  upon  the reasonable request of the regulated entity, make avail-
    52  able to the regulated entity all data in  its  possession  necessary  to
    53  demonstrate  the  service  provider's compliance with the obligations in
    54  this section;
    55    (h) allow, and cooperate with, reasonable assessments by the regulated
    56  entity or the regulated entity's designated  assessor  for  purposes  of

        A. 4983--A                          7

     1  evaluating compliance with the obligations of this article; alternative-
     2  ly,  the  service  provider  may arrange for a qualified and independent
     3  assessor to conduct an assessment of the processor's policies and  tech-
     4  nical  and  organizational  measures in support of the obligations under
     5  this article using an  appropriate  and  accepted  control  standard  or
     6  framework  and  assessment  procedure  for such assessments. The service
     7  provider shall provide a report of  such  assessment  to  the  regulated
     8  entity upon request;
     9    (i)  a  reasonable  time  in advance before disclosing or transferring
    10  regulated health information to any further  service  providers,  notify
    11  the  regulated  entity  of such a proposed disclosure or transfer, which
    12  may be in the form of  a  regularly  updated  list  of  further  service
    13  providers that may access regulated health information; and
    14    (j) engage any further service provider pursuant to a written, binding
    15  agreement  that  includes  the contractual requirements provided in this
    16  section, containing at minimum the same  obligations  that  the  service
    17  provider has entered into with regard to regulated health information.
    18    § 1106. Exemptions. Nothing in this article shall apply to:
    19    1. information processed by local, state, and federal governments, and
    20  municipal corporations;
    21    2.  protected health information that is collected by a covered entity
    22  or business associate governed by  the  privacy,  security,  and  breach
    23  notification  rules issued by the United States Department of Health and
    24  Human Services, Parts 160 and 164 of Title 45 of  the  Code  of  Federal
    25  Regulations,  established  pursuant  to the Health Insurance Portability
    26  and Accountability Act of 1996  (Public  Law  104-191)  and  the  Health
    27  Information  Technology for Economic and Clinical Health Act (Public Law
    28  111-5);
    29    3. any covered entity governed by the privacy,  security,  and  breach
    30  notification  rules issued by the United States Department of Health and
    31  Human Services, Parts 160 and 164 of Title 45 of  the  Code  of  Federal
    32  Regulations,  established  pursuant  to the Health Insurance Portability
    33  and Accountability Act of 1996 (Public Law 104-191), to the  extent  the
    34  covered  entity  maintains  patient  information  in  the same manner as
    35  protected health information as described in  subdivision  two  of  this
    36  section;
    37    4.  information  collected  as part of a clinical trial subject to the
    38  Federal Policy for the Protection of Human Subjects, also known  as  the
    39  Common Rule, pursuant to good clinical practice guidelines issued by the
    40  International  Council  for  Harmonisation  or pursuant to human subject
    41  protection requirements of the United  States  Food  and  Drug  Adminis-
    42  tration;
    43    5.  information  processed  pursuant to the federal Family Educational
    44  Rights and Privacy Act (20 U.S.C. Sec. 1232g) and its implementing regu-
    45  lations;
    46    6. information processed pursuant to section two-d  of  the  education
    47  law; and
    48    7.  information  processed  pursuant  to  the federal Driver's Privacy
    49  Protection Act of 1994 (18 U.S.C.  Sec. 2721 et seq).
    50    § 1107. Enforcement. 1. Whenever it appears to the  attorney  general,
    51  either  upon  complaint or otherwise, that any person or persons, within
    52  or outside the state, has engaged in or is about to engage in any of the
    53  acts or practices stated to be unlawful under this article, the attorney
    54  general may bring an action or special proceeding in  the  name  and  on
    55  behalf of the people of the state of New York to enjoin any violation of
    56  this  article,  to obtain restitution of any moneys or property obtained

        A. 4983--A                          8

     1  directly or indirectly by any such violation, to obtain disgorgement  of
     2  any  profits  obtained  directly or indirectly by any such violation, to
     3  obtain civil penalties of not more than  fifteen  thousand  dollars  per
     4  violation  or twenty percent of revenue obtained from New York consumers
     5  within the past fiscal year, whichever is greater,  and  to  obtain  any
     6  such  other  and  further relief as the court may deem proper, including
     7  preliminary relief.
     8    2. The remedies provided by this section shall be in addition  to  any
     9  other lawful remedy available.
    10    3.  Any  action  or special proceeding brought by the attorney general
    11  pursuant to this section must be commenced within six years of the  date
    12  on which the attorney general became aware of the violation.
    13    4.  In connection with any proposed action or special proceeding under
    14  this section, the attorney general is authorized to take proof and  make
    15  a determination of the relevant facts, and to issue subpoenas in accord-
    16  ance  with  the  civil  practice law and rules. The attorney general may
    17  also require such other data and information as he or she may deem rele-
    18  vant and may require written responses to  questions  under  oath.  Such
    19  power of subpoena and examination shall not abate or terminate by reason
    20  of  any  action  or  special  proceeding brought by the attorney general
    21  under this article.
    22    5. This section shall apply to all acts declared  to  be  unlawful  in
    23  this article, whether or not subject to any other law of this state, and
    24  shall  not  supersede, amend or repeal any other law of this state under
    25  which the attorney general is authorized to take any action  or  conduct
    26  any inquiry.
    27    6.  Any individual who has been injured by a violation of this article
    28  may bring an action in their own name in any court of  competent  juris-
    29  diction  to  enjoin  such  unlawful act or practice and to recover their
    30  actual damages or five thousand dollars  per  individual,  whichever  is
    31  greater.  The  court  shall  also  award reasonable attorney's fees to a
    32  prevailing plaintiff. Actions pursuant to this section may be brought on
    33  a class-wide basis.
    34    7. The attorney general may promulgate such rules and  regulations  as
    35  are necessary to effectuate and enforce the provisions of this section.
    36    §  2.  Severability.  If any clause, sentence, paragraph, subdivision,
    37  section or part of this act shall be adjudged by any court of  competent
    38  jurisdiction  to  be invalid, such judgment shall not affect, impair, or
    39  invalidate the remainder thereof, but shall be confined in its operation
    40  to the clause, sentence, paragraph, subdivision, section or part thereof
    41  directly involved in the controversy in which such judgment  shall  have
    42  been rendered. It is hereby declared to be the intent of the legislature
    43  that  this  act  would have been enacted even if such invalid provisions
    44  had not been included herein.
    45    § 3. This act shall take effect July 1, 2024.
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