Illinois Administrative Code
Title 77 - PUBLIC HEALTH
Part 500 - ILLINOIS VITAL RECORDS CODE
Section 500.70 - Availability of Medical and Health Information
Current through Register Vol. 48, No. 12, March 22, 2024
a) All reports issued by the Department that are aggregated to make it impossible to identify any patient or reporting facility, including the annual report, shall be made available to the public pursuant to the Access to Records of the Department of Public Health (2 Ill. Adm. Code 1127) and the Freedom of Information Act [5 ILCS 140 ].
b) All requests by bonafide researchers approved by the State Registrar seeking confidential vital records data and/or certificates must be submitted in writing to the Division of Vital Records. The request must include a study protocol that contains: objectives of the research; rationale for the research, including scientific literature justifying the current proposal; overall study methods, including copies of forms, questionnaires, and consent forms used to contact facilities, physicians, or study subjects; methods for the processing of data; storage and security measures taken to insure confidentiality of the registrant and parental identifying information; time frame of the study; a description of the funding source of the study (e.g., federal contract); and the curriculum vitae of the principal investigator and a list of collaborators. In addition, the research request must specify what identifying information is needed and how the information will be used.
c) All requests to conduct research and all modifications to approved research proposals involving the use of data and/or vital records certificates that include identifying information shall be subject to a review to determine compliance with the following conditions:
d) Research Agreements
e) In accordance with Jane Doe II v. Lumpkin, prior to the release to private researchers of any copies of birth records or data from the birth records that contain personal identifiers, the State shall first obtain informed consent from the mother to whom the record relates. In requesting this informed consent, the mother shall be provided with a brief description of the research project. Personal identifiers include names, social security numbers, addresses, or any combination of items that may divulge the identity of an individual listed on a Certificate of Live Birth. For the purposes of this Part, private researchers shall include all those researchers who are not employed by the federal government and those researchers not employed by and/or not having a personal services contract to conduct the research utilizing the requested data with any State or local governmental body. Under a governmental personal services contract, the work product and all drafts of the contract shall remain the property of the State or local government. Personal services contractors shall be considered custodians of vital records within the meaning of the Vital Records Act for the term of the personal services contract.
f) Informed consent shall include the written signature of the mother approving her participation in the private research project. Only after the Department receives informed consent from the mother approving the release of her medical data to the private researcher, may the Department release this data.
g) The Department shall disclose individual patient or facility information to the reporting facility that originally supplied that information to the Department, upon written request of the facility.
h) The patient identifying information submitted to the Department by those entities required to submit information under the Act and this Part is to be used in the course of medical study under Part 21 of Article 8 of the Code of Civil Procedure [735 ILCS 5/Art. 8, Part 21]. Therefore, this information is privileged from disclosure by Part 21 of Article 8 of the Code of Civil Procedure.
i) The identity of any facility or any group of facts that tends to lead to the identity of any person submitted to the Division of Vital Records is confidential and shall not be open to public inspection or dissemination. This information shall not be available for disclosure, inspection, or copying under the Freedom of Information Act [5 ILCS 140 ] or the State Records Act [5 ILCS 160 ]. Information for specific research purposes may be released in accordance with procedures established by the Department in this Section.
j) Every hospital shall provide representatives of the Department with access to information from all medical, pathological, and other pertinent records and logs related to the preparation of vital records. The mode of access shall be by mutual agreement between the hospital and the Department.
k) Notwithstanding the provisions of this Section, all information submitted to the Adoption Registry is confidential and gathered by the State solely for the purpose of facilitating the exchange of updated medical data and contact information between adopted and surrendered persons and other registered parties and shall not be released under this Section. Disclosure of identifying information in violation of the Adoption Act is a Class A misdemeanor (Section 18.8 of the Adoption Act).