Section 1005.25  Requests for Release of Health Data by Researchers and Other Individuals

a)         Requests to the Department for health data shall be submitted in a standard format specified by the Department.  All requests for data shall contain the following information:

1)         The specific purpose for which the health data is requested, including testable research hypotheses;

2)         The justification for requested health data elements;

3)         The particular file format desired;

4)         The time period within which the health data is desired;

5)         For health data to be supplied more than once, the frequency with which health data is to be supplied; and 

6)         Any other information the Department may reasonably require, including, but not limited to, an explanation of how the study design can be reasonably expected to answer the proposed hypotheses.

b)         Requests for non-individually identifiable data and limited health data sets shall contain an assurance that no attempt will be made to identify any specific individuals, physicians or individual providers of services about whom health data is supplied, unless approved by the Department.  

c)         Any applicant who includes specific individual provider identification numbers in the request for health data shall furnish, as part of the application, proof of notification of the request to all individual providers, if the request requires IRB approval.  Any individual provider shall have the right to submit comments to the Department.  Comments shall be included with any health data pertaining to the individual provider that is disclosed to the applicant.

(Source:  Added at 38 Ill. Reg. 19251, effective September 10, 2014)