(410 ILCS 520/2) (from Ch. 111 1/2, par. 5602)
Sec. 2.
As used in this Act, unless the context otherwise requires,
the terms specified in this Section have the meanings ascribed to them herein.
(a) "Department" means the Illinois Department of Public Health.
(b) "Disclosure" means the communication of health data to any individual
or organization outside the Department.
(c) "Health data" means any information, except vital records as defined
in the Vital Records Act, relating to the
health status of people, the availability of health resources and services,
and the use and cost of such resources and services.
(d) "Identifiable health data" means any item, collection, or grouping
of health data which makes the individual supplying it or described in it
identifiable.
(e) "Individual" means a natural person.
(f) "Organization" means any corporation, association, partnership,
agency, department, unit or other legally constituted institution or entity
or part thereof.
(g) "Research and statistical purposes" means the performance of certain
activities relating to health data including but not limited to: (1) describing
the group characteristics of individuals or organizations; (2) analyzing
the interrelationships among the various characteristics of individuals
or organizations; (3) the conduct of statistical procedures or studies to
improve the quality of health data; (4) the design of sample surveys and
the selection of samples of individuals or organizations; (5) the preparation
and publication of reports describing these matters; and (6) other related
functions. Specifically excluded as research and statistical purposes
is the use of the data for an individual or organization to make any
determination directly affecting the rights, benefits, or entitlements of
that individual or organization.
(Source: P.A. 87-895.)
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(410 ILCS 520/4) (from Ch. 111 1/2, par. 5604)
Sec. 4. (a) In carrying out the purposes of this Act, the Department may:
(1) Collect and maintain health data on:
(i) The extent, nature, and impact of illness, |
| including factors relating to asthma, obesity, and disability on the population of the State;
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(ii) The determinants of health and health
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| hazards including asthma and obesity;
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(iii) Health resources, including the extent of
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| available manpower and resources;
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(iv) Utilization of health care;
(v) Health care costs and financing;
(vi) Other health or health-related matters; and
(vii) The connection between the long-term
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| effects of childhood cancer and the original cancer diagnosis and treatment.
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(2) Undertake and support research, demonstrations,
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| and evaluations respecting new or improved methods for obtaining current data on the matters referred to in subparagraph (1).
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(b) The Department may collect health data under authority granted by
any unit of local government and on behalf of other governmental or not-for-profit
organizations, including data collected by local schools and the State Board of Education relating to asthma and obesity on the health examination form required pursuant to Section 27-8.1 of the School Code. The data shall be de-identified and aggregated pursuant to rules promulgated by the Department to prevent disclosure of personal identifying information.
(c) The Department shall collect data only on a voluntary basis from individuals
and organizations, except when there is specific legal authority to compel
the mandatory reporting of the health data so requested. In making any collection
of health data from an individual or organization the Department must give
to such individual or organization a written statement which states:
(1) Whether the individual or organization is
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| required to respond, and any sanctions for noncompliance;
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(2) The purposes for which the health data are being
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(3) In the case of any disclosure of identifiable
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| health data for other than research and statistical purposes, the items to be disclosed, to whom the data are to be disclosed and the purposes for which the data are to be disclosed.
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(d) Except as provided in Section 5, no health data obtained in the course
of activities undertaken or supported under this Act may be used for any purpose
other than the purpose for which they were supplied or for which the individual
or organization described in the data has otherwise consented.
(e) The Department shall take such actions as may be necessary to assure
that statistics developed under this Act are of high quality, timely, comprehensive,
as well as specific, standardized and adequately analyzed and indexed.
(f) The Department shall take such action as is appropriate to effect
the coordination of health data activities, including health data specifically relating to obesity collected pursuant to Section 27-8.1 of the School Code, within the State to eliminate
unnecessary duplication of data collection and maximize the usefulness of
data collected.
(g) The Department shall (1) participate with state, local and federal
agencies in the design and implementation of a cooperative system for producing
comparable and uniform health information and statistics at the federal,
state, and local levels; and (2) undertake and support research, development,
demonstrations, and evaluations respecting such cooperative system.
(Source: P.A. 100-238, eff. 1-1-18.)
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(410 ILCS 520/5) (from Ch. 111 1/2, par. 5605) Sec. 5. (a) The Department may make no disclosure of any item, collection
or grouping of health data which makes the individual supplying or described
in such data identifiable unless: (1) The individual described in the data has |
| consented to the disclosure.
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(2) The disclosure is to a governmental entity in
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| this State, in another state or to the federal government, provided that:
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(i) the data will be used for a purpose for which
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| the data was collected by the Department; and
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(ii) the recipient of the data has entered into a
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| written agreement satisfactory to the Department, that it will protect such data in accordance with the requirements of this Act and will not permit further disclosure without prior approval of the Department.
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(3) The disclosure is to an individual or
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| organization, for a specified time period determined by the Department, solely for bona fide research and statistical purposes, as determined in accordance with guidelines adopted by the Department, and the Department determines that: (i) the disclosures of the data to the requesting individual or organization is required for the research and statistical purposes proposed; and (ii) the requesting individual or organization has entered into a written agreement satisfactory to the Department that it will protect such data in accordance with the requirements of this Act and will not permit further disclosure without prior approval of the Department. In no event, however, may the name, address or other unique personal identifier of an individual supplying the data or described in it be disclosed under this subparagraph to the requesting individual or organization, unless a Department-approved Institutional Review Board or its equivalent on the protection of human subjects in research has reviewed and approved the data request.
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(4) The disclosure is to a governmental entity for
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| the purpose of conducting an audit, evaluation or investigation of the Department and such governmental entity agrees not to use such data for making any determination to whom the health data relates.
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(b) Any disclosure provided for in paragraph (a) of this Section shall
be made at the discretion of the Department except that the disclosure provided
for in subparagraph (4) of paragraph (a) of this Section must be made when
the requirements of that subparagraph have been met.
(c) No identifiable health data obtained in the course of activities undertaken
or supported under this Act shall be subject to subpoena or similar compulsory
process in any civil or criminal, judicial, administrative or legislative
proceeding, nor shall any individual or organization with lawful access
to identifiable health data under the provisions of this Act be compelled
to testify with regard to such health data, except that data pertaining
to a party in litigation may be subject to subpoena or similar compulsory
process in an action brought by or on behalf of such individual to enforce
any liability arising under this Act.
(Source: P.A. 96-966, eff. 7-2-10.)
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