AB 1683, as amended, Jones. Ken Maddy California Cancer Registry.
Existing law requires the State Department of Public Health to establish a statewide system for the collection of information determining the incidence of cancer known as the Ken Maddy California Cancer Registry. Existing law authorizes the department to designate any demographic parts of the state as regional cancer incidence reporting areas and establish regional cancer registries to provide cancer incidence data. Under existing law, all cancers diagnosed or treated in the reported area are required to be reported to the representative of the department authorized to compile that data, or any other person or entity designated to cooperate with that representative. Existing regulations require cancer reporting facilities and physicians to employ a mechanism to ensure that their patients are informed that the facility will report each patient with cancer to the State Department of Public Health as required by law.
Under existing law, health care practitioners, including, among others, physicians and surgeons, and any hospital or other facility providing diagnostic or treatment services to patients with cancer are required to grant to the department or the authorized representative access to all records that would identify cases of cancer or would establish characteristics of the cancer, treatment of the cancer, or medical status of any identified cancer patient. All information collected pursuant to those provisions is generally required to be kept confidential.begin insert Existing law authorizes the department to enter into agreements to furnish confidential information to specified persons and entities, including other states’ cancer registries, local health officers, and health researchers.end insert
This bill
would require the State Department of Public Health to inform a patient diagnosed with cancerbegin insert by,end insert or receiving cancer therapy treatmentbegin delete fromend deletebegin insert from, a specified health care practitioner, orend insert a hospital or other facilitybegin delete providing therapy to that patientend delete within an area designated as a cancer reporting area of the reporting requirementbegin insert, and would require the department to also notify a patient of specified information, including, among other things, that the department is authorized to release confidential patient information to health researchersend insert.
This bill would require the department to notify the patientbegin insert, in a cost-effective manner,end insert within 6 months of his or her case being reported to the department. The bill would also prohibit the department from disclosing confidential patient information to certain specified persons or entities until the department informs the patient of the reporting requirement. The bill would also allow a patient to refuse to participate in any research study and authorizes a patient to request that his or her contact information be withheld from health researchers.
Vote: majority. Appropriation: no. Fiscal committee: yes. State-mandated local program: no.
The people of the State of California do enact as follows:
Section 103886 is added to the Health and Safety
2Code, to read:
(a) begin insert(1)end insertbegin insert end insertA patient diagnosed with cancerbegin insert, or provided
4treatment for cancer,end insert by a physician and surgeon, dentist,
5podiatrist, or other health care practitioner or a patient receiving
6cancer therapy treatment from any hospital or other facility
7begin delete providing therapy to that patientend delete within an area designated as a
8cancer reporting area shall be informed by the department of the
9reporting requirement described inbegin insert
subdivision (d) ofend insert Section
10103885.begin delete Theend delete
P3 1begin insert (2)end insertbegin insert end insertbegin insertThe department shall notify the patient of all of the following
2information:end insert
3(A) A description of the cancer registry, as provided in
4subdivisions (a) and (b) of Section 103885.
5(B) An explanation of how the department obtains all records
6that would identify cases of cancer and the type of
information
7collected by the department, as described in subdivision (f) of
8Section 103885.
9(C) The purposes for which the information obtained by the
10department is collected and intended to be used, as described in
11subdivision (g) of Section 103885.
12(D) The authorization of the department to release confidential
13patient information to any person with a valid scientific interest,
14other states’ cancer registries, federal cancer control agencies,
15local health officers, or health researchers, pursuant to subdivision
16(g) of Section 103885.
17(E) The discretion of a patient to refuse to participate in any
18research study and to request that his or her contact information
19be withheld, pursuant to subdivision (c).
20(F) The benefits of participating in cancer research, including,
21but not limited to, the opportunity to contribute to the discovery
22of improved treatments and survival rates for cancer patients.
23begin insert(3)end insertbegin insert end insertbegin insertTheend insert department shall notify the patientbegin insert
of the reporting
24requirement and the information described in paragraph (2)end insert within
25six months of his or her case being reported to the department.
26(b) The department shall not disclose confidential information
27to any persons, other states’ cancer registries, federal cancer control
28agencies, local health officers, or health researchers pursuant to
29begin insert subdivision (g) ofend insert Section 103885, until the department informs
30the patient of the reporting requirement described inbegin insert subdivision
31(d) ofend insert Section 103885.
32(c) The patient may refuse to participate in any research study
33and
may request that his or her contact information be withheld
34from those persons or health researchers who obtain the patient’s
35confidential information pursuant to Section 103885.
36(d) All notifications to the patient required under this section
37shall be distributed in a cost-effective mannerbegin insert, including, but not
38limited to, by e-mailend insert.
39(e) The department shall adopt regulations as it determines are
40necessary for the implementation of this section in accordance
P4 1with the Administrative Procedure Act, Chapter 3.5 (commencing
2with Section 11340) of Part 1 of Division 3 of Title 2 of the
3Government Code.
O
98