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12  AN ACT establishing a cancer registry in the state of Kansas and providing
13    for rules and regulations for the operation thereof.
14
15  Be it enacted by the Legislature of the State of Kansas:
16    Section 1.  As used in this act:
17    (a)  ``Confidential data'' means any data which permits the identifi-
18  cation of individuals.
19    (b)  ``Health care provider'' means a person licensed to practice med-
20  icine and surgery, a hospital as defined in K.S.A. 65-425 and amendments
21  thereto, any individual providing health care services or a pathology lab-
22  oratory.
23    (c)  ``Secretary'' means the secretary of the department of health and
24  environment.
25    Sec. 2.  (a) The secretary is hereby authorized to collect data pertain-
26  ing to all cancers occurring in Kansas into a registry which shall be the
27  cancer registry for the state of Kansas. The secretary shall adopt rules and
28  regulations which use the most efficient, least intrusive means for col-
29  lecting cancer data consistent with ensuring the quality, timeliness, com-
30  pleteness and confidentiality of the cancer registry. The rules and regu-
31  lations shall specify who shall report, the data elements to be reported,
32  timeliness of reporting and format for collecting and transmitting data to
33  the registry.
34    (b)  Hospitals, providers of cancer screening, diagnostic or therapeutic
35  services, and pathology laboratories may be required by rule and regu-
36  lation to report information regarding all persons identified with cancer
37  to the cancer registry.
38    (c)  (b)  Reporting by persons licensed to practice medicine or sur-
39  gery and other individuals providing health care services shall be limited
40  to responding to requests for information regarding persons with cancer
41  previously identified by other means.
42    Sec. 3.  Uses of registry data which are not confidential in nature
43  include, but are not limited to:
HB 2181--Am. by SCW
                                     

 1    (a)  The production of statistical data which outline the frequency,
 2  distribution, severity at diagnosis, treatment and survival for each type of
 3  cancer;
 4    (b)  the design and implementation of cancer screening programs
 5  which have been demonstrated to decrease cancer mortality;
 6    (c)  assessing the cancer risk in the Kansas population;
 7    [(d)  assessing the possible cancer risk of abortion;]
 8    (d) [e]  identifying previously unrecognized risk factors and causes of
 9  cancer;
10    (e) [f]  monitoring the potential health impact of environmental ex-
11  posures;
12    (f) [g]  monitoring health care access and utilization and effectiveness
13  of services for the prevention and treatment of cancer; and
14    (g) [h]  quantifying costs associated with cancer care.
15    Sec. 4.  The information contained on the cancer registry shall be
16  confidential, shall not be disclosed except as provided in section 5
17  and amendments thereto, shall not be subject to subpoena, discov-
18  ery or introduction into evidence in any civil or criminal proceeding
19  and shall not be subject to the provisions of the Kansas open records act.
20  The secretary shall ensure that the confidentiality of any data collected
21  which might be used to identify an individual with cancer or a health care
22  provider is maintained. Storage of cancer data shall be in a manner which
23  will protect all information which uniquely identifies individuals.
24    Sec. 5.  Confidential data collected pursuant to this act shall be
25  securely locked and used only for the following purposes:
26    (a)  Ensuring the quality and completeness of the registry data.
27    (b)  Investigating the nature and cause of abnormal clusterings of can-
28  cer [and the possible cancer risk related to having an abortion].
29    (c)  Offering through the personal physician, to persons with cancer,
30  access to cancer diagnostics and treatments not available except through
31  clinical trials. As long as such trials are conducted with the informed,
32  written consent of the cancer patient, the confidential data is approved
33  for release by the secretary for the purpose of such clinical trials and the
34  clinical trials are approved by the clinical entity.
35    (d)  Releasing data back to the institution or individual which reported
36  cases as long as such release includes only those cases previously reported
37  by the requesting institution or individual.
38    (e)  As part of an exchange agreement with another state, confidential
39  data collected on a resident of another state may be released to the cancer
40  registry of that person's state of residence if that state has confidentiality
41  requirements that provide assurance of protection of confidentiality
42  equivalent to that provided by Kansas under this act.
43    (f)  Releasing information upon consent, in writing, of the person who
HB 2181--Am. by SCW
                                     

 1  is the subject of the information, or if such person is under 18 years of
 2  age, by such person's parent or guardian.
 3    Sec. 6.  The secretary shall designate a panel, including at least one
 4  physician licensed to practice medicine in Kansas and the registry direc-
 5  tor, which shall establish policies for release of nonconfidential data and
 6  shall review requests for the confidential registry data. No restrictions are
 7  placed on release of data which are statistical in nature.
 8    Sec. 7.  Any health care provider, whether a person or institution,
 9  who reports cancer information to the registry in good faith and without
10  malice, in accordance with the requirements of this statute, shall have
11  immunity from any liability, civil or criminal, which might otherwise be
12  incurred or imposed in an action resulting from such report. Notwith-
13  standing K.S.A. 60-427 and amendments thereto, there shall be no priv-
14  ilege preventing the furnishing of such information or reports as required
15  by this act by any health care provider. Nothing in this section shall be
16  construed to apply to the unauthorized disclosure of confidential or priv-
17  ileged information when such disclosure is due to gross negligence or
18  willful misconduct.
19    Sec. 8.  This act shall take effect and be in force from and after its
20  publication in the statute book.