Florida Senate - 2017              PROPOSED COMMITTEE SUBSTITUTE
       Bill No. CS for SB 804
       
       
       
       
       
                               Ì747152"Î747152                          
       
       576-04079-17                                                    
       Proposed Committee Substitute by the Committee on Appropriations
       (Appropriations Subcommittee on Health and Human Services)
    1                        A bill to be entitled                      
    2         An act relating to electronic health records; amending
    3         s. 765.101, F.S.; redefining the terms “health care
    4         decision” and “incapacity” or “incompetent”; creating
    5         s. 765.114, F.S.; authorizing a person to donate his
    6         or her electronic health records, subject to certain
    7         requirements; authorizing electronic health records
    8         and qualified electronic health records to be donated
    9         to specified entities for specified purposes;
   10         providing a form for a uniform donor card; requiring
   11         electronic health records and qualified electronic
   12         health records donated by a health care surrogate or
   13         proxy to be de-identified; authorizing electronic
   14         health records and qualified electronic health records
   15         to contain a donor’s identifying information under
   16         certain conditions; authorizing a donor to amend the
   17         terms or revoke an electronic health records donation
   18         in specified manners; creating s. 765.1141, F.S.;
   19         requiring the Agency for Health Care Administration
   20         and the Department of Highway Safety and Motor
   21         Vehicles to develop and implement a program that
   22         encourages and authorizes persons to donate electronic
   23         health records and qualified electronic health records
   24         as part of a process of issuing and renewing
   25         identification cards and driver licenses; requiring
   26         specified information to be included in the donor
   27         registration card distributed by the department;
   28         requiring the agency and the department to develop and
   29         implement a program to identify donors through
   30         notations on identification cards and driver licenses;
   31         requiring the agency to provide certain supplies and
   32         forms, and the department to provide a recordkeeping
   33         system; prohibiting the department and agency from
   34         incurring liability in connection with the performance
   35         of certain acts; requiring the department to maintain
   36         a link on its website referring visitors to an
   37         electronic health records repository under certain
   38         circumstances; requiring rulemaking; amending s.
   39         765.203, F.S.; revising the suggested form for
   40         designation of a health care surrogate to expand
   41         health care decision authority of the health care
   42         surrogate; directing the Office of Program Policy
   43         Analysis and Government Accountability (OPPAGA) to
   44         conduct a study of current federal and state efforts
   45         on, and available opportunities for, the collecting,
   46         sharing, and donating certain electronic health
   47         records for the advancement of medical science;
   48         requiring OPPAGA to identify available options
   49         regarding databases or repositories; directing OPPAGA
   50         to identify any existing state or federal legislation
   51         or programs that allow such donations and identify the
   52         benefits of, and barriers to, establishing such
   53         programs in the state; requiring OPPAGA to report its
   54         findings and recommendations to the Legislature by a
   55         specified date; providing an effective date.
   56          
   57  Be It Enacted by the Legislature of the State of Florida:
   58  
   59         Section 1. Paragraph (e) is added to subsection (6) of
   60  section 765.101, Florida Statutes, and subsection (10) of that
   61  section is amended, to read:
   62         765.101 Definitions.—As used in this chapter:
   63         (6) “Health care decision” means:
   64         (e) The right of a health care surrogate or proxy to donate
   65  the principal’s electronic health records and qualified
   66  electronic health records, as defined in s. 408.051, upon the
   67  principal’s death to an approved medical or dental school,
   68  college, university, hospital, or repository that collects,
   69  stores, and shares de-identified electronic health records in
   70  the public domain for purposes of educating or developing
   71  diagnoses, treatment choices, policies, health care system
   72  designs, and innovations in order to improve health outcomes and
   73  reduce health care costs. For purposes of this paragraph, the
   74  term “approved” means approved by the Department of Health.
   75         (10) “Incapacity” or “incompetent” means the patient is
   76  physically or mentally unable to communicate a willful and
   77  knowing health care decision. For the purposes of making an
   78  anatomical gift or donating electronic health records or
   79  qualified electronic health records, the term also includes a
   80  patient who is deceased.
   81         Section 2. Section 765.114, Florida Statutes, is created to
   82  read:
   83         765.114Donating electronic health records and qualified
   84  electronic health records.—
   85         (1) A person may donate all or part of his or her
   86  electronic health records or qualified electronic health records
   87  by doing any of the following:
   88         (a) Signing an electronic health records donor card.
   89         (b) Indicating an intent to donate on his or her driver
   90  license or identification card issued by the Department of
   91  Highway Safety and Motor Vehicles. Revocation, suspension,
   92  expiration, or cancellation of the driver license or
   93  identification card does not invalidate the intent to donate.
   94         (c) Expressing a wish to donate in a living will or other
   95  advance directive.
   96         (d) Expressing a wish to donate in a will. The donation
   97  becomes effective upon the death of the testator without waiting
   98  for probate. If the will is not probated or if it is declared
   99  invalid for testamentary purposes, the donation is nevertheless
  100  valid to the extent that it has been acted upon in good faith.
  101         (e) Expressing a wish to donate in a document other than a
  102  will. The document must be signed by the donor in the presence
  103  of two adult witnesses, who must sign the document in the
  104  donor’s presence. If the donor cannot sign, the document may be
  105  signed by another person at the donor’s direction and in his or
  106  her presence and in the presence of two witnesses, who must sign
  107  the document in the donor’s presence. Delivery of the document
  108  during the donor’s lifetime is not necessary to make the intent
  109  to donate valid. The following form of written document is
  110  sufficient for any person to make a donation of electronic
  111  health records or qualified electronic health records for the
  112  purposes of this part:
  113  
  114            UNIFORM ELECTRONIC HEALTH RECORDS DONOR CARD           
  115  
  116  The undersigned hereby makes this health records donation, to
  117  take effect on death. The words and marks below indicate my
  118  desires:
  119  I give:
  120         1..... all electronic health records;
  121         2..... only the following electronic health records:
  122                 ...[Specify the health records]...                
  123  for the purpose of medical research or education.
  124  
  125  Signed by the donor and the following witnesses in the presence
  126  of each other:
  127  
  128  ...(Signature of donor)...        ...(Date of birth of donor)...
  129  ...(Date signed)...                       ...(City and State)...
  130  
  131  ...(Witness)...                                  ...(Witness)...
  132  ...(Address)...                                  ...(Address)...
  133  
  134         (2) The de-identified electronic health records or
  135  qualified electronic health records may be given to one or more
  136  donees that are accredited medical or dental schools, colleges,
  137  universities, hospitals, or repositories for the purposes of
  138  educating or developing diagnoses, treatment choices, policies,
  139  health care system designs, and innovations to improve health
  140  outcomes and reduce health care costs. Electronic health records
  141  or qualified electronic health records with a donor’s
  142  identifying information may be given to a donee upon written
  143  consent of the donor. The donees must be approved by the
  144  Department of Health and may be specified by name.
  145         (3) Any electronic health records or qualified electronic
  146  health records donated by a health care surrogate or proxy
  147  designated by the decedent pursuant to part II of this chapter
  148  must be de-identified, unless the donee provides written consent
  149  stating that his or her identifying information may be included
  150  with such records, and such donation must be made by a document
  151  signed by that person or made by that person’s witnessed
  152  telephonic discussion, telegraphic message, or other recorded
  153  message.
  154         (4) A donor may amend the terms of or revoke a donation of
  155  electronic health records or qualified electronic health records
  156  by any of the following means:
  157         (a) The execution and delivery to the donee of a signed
  158  statement witnessed by at least two adults, one of whom is a
  159  disinterested witness.
  160         (b) An oral statement that is made in the presence of two
  161  adult witnesses, one of whom is not a family member, and
  162  communicated to the donor’s family or attorney or to the donee.
  163  An oral statement is effective only if the medical or dental
  164  school, college, university, hospital, or repository has actual
  165  notice of the oral amendment or revocation.
  166         (c) An oral statement made during a terminal illness or
  167  injury addressed to the primary physician, who must communicate
  168  the revocation of the gift to the medical or dental school,
  169  college, university, hospital, or repository.
  170         (d) A signed document found on or about the donor’s person.
  171         (e) A later-executed document of donation which amends or
  172  revokes a previous health records donation or portion of a
  173  health records donation, either expressly or by inconsistency.
  174         (f) The destruction or cancellation, with the intent to
  175  revoke the donation, of the document that indicates the intent
  176  to donate or the destruction or cancellation of that portion of
  177  the document which indicates the intent to donate.
  178         Section 3. Section 765.1141, Florida Statutes, is created
  179  to read:
  180         765.1141Electronic health records donations as part of
  181  driver license or identification card process.—
  182         (1) The Agency for Health Care Administration and the
  183  Department of Highway Safety and Motor Vehicles shall develop
  184  and implement a program encouraging and authorizing persons to
  185  donate electronic health records and qualified electronic health
  186  records, as defined in s. 408.051, as a part of the process of
  187  issuing and renewing identification cards and driver licenses.
  188  The donor registration card distributed by the department must
  189  include the information and signatures required in the uniform
  190  electronic health records donor card under s. 765.114(1)(e) and
  191  such additional information as determined necessary by the
  192  department. The department shall also develop and implement a
  193  program to identify donors which includes notations on
  194  identification cards and driver licenses to clearly indicate the
  195  individual’s intent to donate his or her electronic health
  196  records. The agency shall provide the necessary supplies and
  197  forms using appropriated funds or contributions from interested
  198  voluntary, nonprofit organizations. The department shall provide
  199  the necessary recordkeeping system using appropriated funds. The
  200  department and the agency do not incur liability in connection
  201  with the performance of any act authorized in this section.
  202         (2) The department shall maintain an integrated link on its
  203  website referring a visitor renewing an identification card or a
  204  driver license or conducting other business to an electronic
  205  health records repository if available.
  206         (3) The department, after consultation with and concurrence
  207  by the agency, shall adopt rules to implement this section
  208  pursuant to chapter 120.
  209         Section 4. Section 765.203, Florida Statutes, is amended to
  210  read:
  211         765.203 Suggested form of designation.—A written
  212  designation of a health care surrogate executed pursuant to this
  213  chapter may, but need not be, in the following form:
  214  
  215                DESIGNATION OF HEALTH CARE SURROGATE               
  216  
  217  I, ...(name)..., designate as my health care surrogate under s.
  218  765.202, Florida Statutes:
  219  
  220  Name: ...(name of health care surrogate)...
  221  Address: ...(address)...
  222  Phone: ...(telephone)...
  223  
  224  If my health care surrogate is not willing, able, or reasonably
  225  available to perform his or her duties, I designate as my
  226  alternate health care surrogate:
  227  
  228  Name: ...(name of alternate health care surrogate)...
  229  Address: ...(address)...
  230  Phone: ...(telephone)...
  231  
  232                    INSTRUCTIONS FOR HEALTH CARE                   
  233  
  234  I authorize my health care surrogate to:
  235         ...(Initial here)... Receive any of my health information,
  236  whether oral or recorded in any form or medium, that:
  237         1. Is created or received by a health care provider, health
  238  care facility, health plan, public health authority, employer,
  239  life insurer, school or university, or health care
  240  clearinghouse; and
  241         2. Relates to my past, present, or future physical or
  242  mental health or condition; the provision of health care to me;
  243  or the past, present, or future payment for the provision of
  244  health care to me.
  245  I further authorize my health care surrogate to:
  246         ...(Initial here)... Make all health care decisions for me,
  247  which means he or she has the authority to:
  248         1. Provide informed consent, refusal of consent, or
  249  withdrawal of consent to any and all of my health care,
  250  including life-prolonging procedures.
  251         2. Apply on my behalf for private, public, government, or
  252  veterans’ benefits to defray the cost of health care.
  253         3. Access my health information reasonably necessary for
  254  the health care surrogate to make decisions involving my health
  255  care and to apply for benefits for me.
  256         4. Decide to make an anatomical gift pursuant to part V of
  257  chapter 765, Florida Statutes.
  258         5.Donate my electronic health records and qualified
  259  electronic health records, as defined in s. 408.051, Florida
  260  Statutes, to one or more accredited medical or dental schools,
  261  colleges, universities, hospitals, or repositories, approved by
  262  the Department of Health, to share my de-identified health
  263  records for purposes of developing diagnoses, treatment choices,
  264  policies, health care system designs, and innovations to improve
  265  health outcomes and reduce health care costs.
  266         ...(Initial here)... Specific instructions and
  267  restrictions: ..................................................
  268  ................................................................
  269  ................................................................
  270  
  271  While I have decisionmaking capacity, my wishes are controlling
  272  and my physicians and health care providers must clearly
  273  communicate to me the treatment plan or any change to the
  274  treatment plan prior to its implementation.
  275  
  276  To the extent I am capable of understanding, my health care
  277  surrogate shall keep me reasonably informed of all decisions
  278  that he or she has made on my behalf and matters concerning me.
  279  
  280  THIS HEALTH CARE SURROGATE DESIGNATION IS NOT AFFECTED BY MY
  281  SUBSEQUENT INCAPACITY EXCEPT AS PROVIDED IN CHAPTER 765, FLORIDA
  282  STATUTES.
  283  
  284  PURSUANT TO SECTION 765.104, FLORIDA STATUTES, I UNDERSTAND THAT
  285  I MAY, AT ANY TIME WHILE I RETAIN MY CAPACITY, REVOKE OR AMEND
  286  THIS DESIGNATION BY:
  287         (1) SIGNING A WRITTEN AND DATED INSTRUMENT WHICH EXPRESSES
  288  MY INTENT TO AMEND OR REVOKE THIS DESIGNATION;
  289         (2) PHYSICALLY DESTROYING THIS DESIGNATION THROUGH MY OWN
  290  ACTION OR BY THAT OF ANOTHER PERSON IN MY PRESENCE AND UNDER MY
  291  DIRECTION;
  292         (3) VERBALLY EXPRESSING MY INTENTION TO AMEND OR REVOKE
  293  THIS DESIGNATION; OR
  294         (4) SIGNING A NEW DESIGNATION THAT IS MATERIALLY DIFFERENT
  295  FROM THIS DESIGNATION.
  296  
  297  MY HEALTH CARE SURROGATE’S AUTHORITY BECOMES EFFECTIVE WHEN MY
  298  PRIMARY PHYSICIAN DETERMINES THAT I AM UNABLE TO MAKE MY OWN
  299  HEALTH CARE DECISIONS UNLESS I INITIAL EITHER OR BOTH OF THE
  300  FOLLOWING BOXES:
  301  
  302  IF I INITIAL THIS BOX [....], MY HEALTH CARE SURROGATE’S
  303  AUTHORITY TO RECEIVE MY HEALTH INFORMATION TAKES EFFECT
  304  IMMEDIATELY.
  305  
  306  IF I INITIAL THIS BOX [....], MY HEALTH CARE SURROGATE’S
  307  AUTHORITY TO MAKE HEALTH CARE DECISIONS FOR ME TAKES EFFECT
  308  IMMEDIATELY. PURSUANT TO SECTION 765.204(3), FLORIDA STATUTES,
  309  ANY INSTRUCTIONS OR HEALTH CARE DECISIONS I MAKE, EITHER
  310  VERBALLY OR IN WRITING, WHILE I POSSESS CAPACITY SHALL SUPERSEDE
  311  ANY INSTRUCTIONS OR HEALTH CARE DECISIONS MADE BY MY SURROGATE
  312  THAT ARE IN MATERIAL CONFLICT WITH THOSE MADE BY ME.
  313  
  314  SIGNATURES: Sign and date the form here:
  315  ...(date)...                              ...(sign your name)...
  316  ...(address)...                          ...(print your name)...
  317  ...(city)... ...(state)...
  318  
  319  SIGNATURES OF WITNESSES:
  320  First witness                                     Second witness
  321  ...(print name)...                            ...(print name)...
  322  ...(address)...                                  ...(address)...
  323  ...(city)... ...(state)...            ...(city)... ...(state)...
  324  ...(signature of witness)...        ...(signature of witness)...
  325  ...(date)...                                        ...(date)...
  326         Section 5. The Office of Program Policy Analysis and
  327  Government Accountability (OPPAGA) shall conduct a study of
  328  current federal and state efforts on, and available
  329  opportunities for, the collecting, sharing, and donating of
  330  electronic health records before or after a patient’s death for
  331  the advancement of medical science. OPPAGA shall identify
  332  available options regarding databases or repositories that will
  333  allow for the collection and distribution of donated electronic
  334  health records for the purpose of advancing the current state of
  335  medicine, including any existing public or private databases or
  336  repositories and any available opportunities for public or
  337  private funding to establish such a database or repository.
  338  OPPAGA shall also study the donation of electronic health
  339  records to identify any existing state or federal legislation or
  340  programs that allow such donations and to identify the benefits
  341  of, and barriers to, establishing such programs in the state of
  342  Florida. OPPAGA shall report its findings and recommendations
  343  for an electronic health records donation process to the
  344  President of the Senate and the Speaker of the House of
  345  Representatives no later than December 1, 2017.
  346         Section 6. This act shall take effect July 1, 2017.