Illinois Administrative Code
Title 77 - PUBLIC HEALTH
Part 550 - HEAD AND SPINAL CORD INJURY CODE
Section 550.130 - Confidentiality and Availability of Data
Current through Register Vol. 48, No. 12, March 22, 2024
a) All reports and records made pursuant to the Act and maintained by the Department and other appropriate persons, officials and institutions pursuant to the Act shall be confidential. Information shall not be made available to any individual or institution except to:
b) The Department shall not reveal the identity of a patient, physician or hospital, except that the identity of the patient may be released upon written consent of the patient, parent (in the case of a minor patient) or guardian, the identity of the physician may be released upon written consent of the physician; and the identity of the hospital may be released upon written consent of the hospital. (Section 3 of the Act)
c) The Department shall request consent for release from a patient, a physician or hospital only upon a showing by the applicant for such release that obtaining the identities of certain patients, physicians or hospitals is necessary for his bona fide research directly related to the objectives of the Act. (Section 3 of the Act)
d) The Department shall at least annually compile a report of the data accumulated through the reporting system established under Section 2 of the Act and shall submit such data relating to spinal cord and head injuries in accordance with confidentiality restrictions established pursuant to the Act to the Council. (Section 3 of the Act)
e) Head and Spinal Cord Injury Registry data may be provided for medical or epidemiological research by bona fide scientific researchers in accordance with subsection (f). All requests by bona fide scientific researchers for such data must be submitted in writing to the Department at https://dph.illinois.gov/data-statistics/institutional-review-board.html. 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 ensure confidentiality of patient and facility identifying information; time frame of the study; a description of the funding source of the study (e.g., federal contract); the curriculum vitae of the principal researcher and a list of collaborators. In addition, the research request must specify what patient or facility identifying information is needed and how the information will be used.
f) All requests to conduct research and modifications to approved research proposals involving the use of data that includes patient or facility identifying information shall be subject to a review to determine compliance with all the following conditions:
g) The Department will enter into a written Research Agreement for all approved research requests. The Agreement shall specify the information that is being released and how it can be used, in accordance with subsection (e) above. The Department will only provide available data relevant to the goals and objectives of the specific research approved by the Department.
h) The identity of any facility or individual, or any group of facts that tends to lead to the identity of any person whose condition or treatment is submitted to the Department, shall not be open to public inspection or dissemination.
i) Every hospital shall provide representatives of the Department with access to information from all medical, pathological, and other pertinent records and logs related to reportable registry information. The Department shall not require hospitals to provide information on cases that are dated more than two years before the Department's request for further information.
j) Every hospital shall provide access to information regarding specified patients or other patients specified for research studies, related to reportable registry information, conducted by the Department.