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--B

                               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  -- again reported from said committee with amend-
          ments, 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;

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD01105-07-3

        A. 4983--B                          2

     1    (b) Publicly commits to process the information only  as  deidentified
     2  information  and  not attempt to reidentify the information, except that
     3  the regulated entity or service provider may attempt to  reidentify  the
     4  information  solely  for  the purpose of determining whether its deiden-
     5  tification processes satisfy the requirements of this section; and
     6    (c) Contractually obligates any recipient of the deidentified informa-
     7  tion to comply with all requirements of this section.
     8    2.  "Regulated  health  information"  means  any  information  that is
     9  reasonably linkable to an individual, or a device, and is  collected  or
    10  processed  in  connection with the physical or mental health of an indi-
    11  vidual.  Location or payment information that relates to an individual's
    12  physical or mental health or any inference drawn  or  derived  about  an
    13  individual's physical or mental health that is reasonably linkable to an
    14  individual,  or a device, shall be considered, without limitation, regu-
    15  lated health information. Regulated health information shall not include
    16  deidentified information.
    17    3. "Process" or "processing" means an operation or set  of  operations
    18  performed  on regulated health information, including but not limited to
    19  the collection, use,  access,  sharing,  sale,  monetization,  analysis,
    20  retention,  creation,  generation,  derivation, recording, organization,
    21  structuring, storage,  disclosure,  transmission,  disposal,  licensing,
    22  destruction,  deletion,  modification,  or deidentification of regulated
    23  health information.
    24    4. "Regulated entity" means any entity that (a) controls the  process-
    25  ing  of  regulated health information of an individual who is a New York
    26  resident, (b) controls the processing of regulated health information of
    27  an individual who is physically present in New York while that  individ-
    28  ual is in New York, or (c) is located in New York and controls the proc-
    29  essing  of  regulated  health  information of an individual. A regulated
    30  entity may also be a service provider  depending  upon  the  context  in
    31  which regulated health information is processed.
    32    5.  "Sell" means to share regulated health information for monetary or
    33  other valuable consideration. Selling does not include  the  sharing  of
    34  regulated  health  information  for monetary or other valuable consider-
    35  ation to a third party as an asset that is part of  a  merger,  acquisi-
    36  tion,  bankruptcy, or other transaction in which the third party assumes
    37  control of all or part of the regulated entity's assets.
    38    6. "Service provider" means any person or entity that processes  regu-
    39  lated  health  information  on  behalf  of a regulated entity. A service
    40  provider may also be a regulated entity depending upon  the  context  in
    41  which regulated health information is processed.
    42    7.  "Third  party" means a person or entity other than the individual,
    43  regulated entity, or service  provider  involved  in  a  transaction  or
    44  occurrence that involves regulated health information. A third party may
    45  also  be  a  regulated  entity  or  service  provider depending upon the
    46  context in which regulated health information is processed.
    47    § 1101. Requirements for communications to individuals.  All  notices,
    48  disclosures,  forms,  and  other  communications to individuals provided
    49  pursuant to this article shall comply with the following:
    50    1. In general, all communications  shall  use  plain,  straightforward
    51  language,  avoiding  technical  or  legal  jargon,  and must be provided
    52  through an interface regularly used in conjunction  with  the  regulated
    53  entity's product or service.
    54    2.  All  communications  shall be reasonably accessible to individuals
    55  with disabilities, including by:
    56    (a) utilizing digital accessibility tools;

        A. 4983--B                          3

     1    (b) for notices, complying with generally recognized  industry  stand-
     2  ards,  including,  but  not  limited  to,  the Web Content Accessibility
     3  Guidelines, version 2.1 of June 5, 2018, from the World Web  Consortium,
     4  incorporated herein by reference; and
     5    (c) for other communications, providing information about how an indi-
     6  vidual  with a disability may access the communication in an alternative
     7  format.
     8    3. All communications shall be available in the languages in which the
     9  regulated entity provides information via its website and services.  Any
    10  direct  communication to an individual shall be provided in the language
    11  in which the individual ordinarily interacts with the  regulated  entity
    12  or its service provider.
    13    4. A regulated entity shall make any notice for processing pursuant to
    14  a permissible purpose, pursuant to subparagraph (ii) of paragraph (b) of
    15  subdivision  one  of section eleven hundred two of this article, or form
    16  for processing pursuant to authorization, pursuant to  subparagraph  (i)
    17  of  paragraph  (b)  of  subdivision one of section eleven hundred two of
    18  this article, publicly available on its  website.  If  an  authorization
    19  form is customized for each individual, the regulated entity may instead
    20  publicly post a sample authorization form on its website.
    21    §  1102. Lawfulness of processing regulated health information.  1. In
    22  general, it shall be unlawful for a regulated entity to:
    23    (a) sell an individual's  regulated  health  information  to  a  third
    24  party; or
    25    (b)  otherwise  process  an  individual's regulated health information
    26  unless:
    27    (i) The individual has provided valid authorization for such  process-
    28  ing; or
    29    (ii)  Processing  of  an  individual's regulated health information is
    30  strictly necessary for the purpose of:
    31    (A) providing a product or service requested by such individual;
    32    (B) conducting the regulated entity's  internal  business  operations,
    33  which exclude any activities related to marketing, advertising, research
    34  and development, or providing products or services to third parties;
    35    (C) protecting against malicious, fraudulent, or illegal activity;
    36    (D)  detecting,  responding  to,  or  preventing security incidents or
    37  threats;
    38    (E) protecting the vital interests of  an  individual  or  the  public
    39  interest in the area of public health;
    40    (F) investigating, establishing, exercising, preparing for, or defend-
    41  ing legal claims; or
    42    (G) complying with the regulated entity's legal obligations.
    43    2.  A  regulated  entity  that  processes regulated health information
    44  pursuant to valid authorization as required by subparagraph (i) of para-
    45  graph (b) of subdivision one of  this  section  shall  comply  with  the
    46  following:
    47    (a)  A  request for authorization to process an individual's regulated
    48  health information shall:
    49    (i) be made separately from any other transaction or part of a  trans-
    50  action;
    51    (ii) be made at least twenty-four hours after an individual creates an
    52  account or first uses the requested product or service;
    53    (iii)  be made in the absence of any mechanism that has the purpose or
    54  substantial effect of obscuring, subverting, or  impairing  an  individ-
    55  ual's decision-making regarding authorization for processing;

        A. 4983--B                          4

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

        A. 4983--B                          5

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

        A. 4983--B                          6

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

        A. 4983--B                          7

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

        A. 4983--B                          8

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