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: 83 765.114 Donating 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: 180 765.1141 Electronic 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.