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Illinois Health Information Exchange’s Impact on the Illinois Mental Health and Developmental Disabilities Confidentiality Act

In 2012 Illinois’s Office of Health Information Technology (OHIT) encountered some barriers that prevented the smooth transition it desired for its statewide Health Information Exchange (HIE). [1] A major sticking point was the Illinois Mental Health and Developmental Disabilities Confidentiality Act (IMHDDCA or Act), created in 1979 to broadly protect the privacy of information relating to the treatment of mental illness and developmental disabilities. [2] While the Act was originally designed to protect those with mental health issues and developmental disabilities (MHDD), it was poised to cause more harm than solutions within the Illinois Health Information Exchange (ILHIE or Exchange). [3]

The main problem encountered by OHIT was that IMHDDCA was much more restrictive than the Health Insurance Portability and Accountability Act (HIPAA). Both IMHDDCA and HIPAA safeguard protected health information (PHI), but satisfying both would require the ILHIE to perform two different mechanisms whenever patients consented to or retracted their consent. Because ILHIE is required to comport with both laws, the Exchange would have experienced unnecessary administrative hurdles and barriers without a legislative change. [4]

IMHDDCA broadly prohibited the disclosure of any records or communications relating to a patient’s mental illness or developmental disability, also known as mental health information (MHI), without that patient’s written consent. [5] Written consent for disclosure of records must specify: (1) the recipient of the information; (2) the nature of the information disclosed; (3) the purpose of the disclosure; and (4) a calendar date on which the consent would expire. [6] Requiring specified recipients, the nature, and the purpose of the MHI disclosure meant that individuals could not give general or “blanket” consents (i.e. “I consent to all future disclosures to all ILHIE affiliates”). [7]  The greatest frustration arose when consents expired, which led to confusion among both patients and doctors. These requirements made it virtually impossible to implement MHI within the ILHIE. [8]

The IMHDDCA’s lack of provisions regarding the creation and maintenance of electronic health records (EHR) not only presented more obstacles to the ILHIE, but also demonstrated its outdatedness. For example, no allowances in the IMHDDCA were made for the release of de-identified patient information for research purposes without written consent.  The development of large pools of raw health data was a significant benefit anticipated from the ILHIE.  Due to the strict consent requirements, ILHIE would not be able to provide any significant data on MHDD for research. [9]

Rather than attempting to work around the barriers presented by the IMHDDCA, OHIT created the Behavioral Health Integration Project (BHIP) to determine what issues were present and what modifications were necessary to include MHI in the ILHIE. [10] The main solution was the creation of an HIE exception to the IMHDDCA’s strict written consent standards.  Although the ILHIE will be an opt-out system, patients will still have a final say on what kinds of MHI they want shared through the HIE. [11] The IMHDDCA was also adapted to mirror certain provisions of HIPAA for disclosing patient information. [12]

Despite this huge step forward for MHI, there is an obvious fear that providing wide accessibility to the highly sensitive MHI of millions of Illinois residents may lead to the exact privacy breaches that the IMHDDCA originally sought to prevent.  However, these fears are temporarily outweighed by the needs of the mental health community to have equal access to a unified, easily accessible, and shareable health records.  It is clear that patients will gain a significant benefit from this opportunity to participate in the ILHIE, but only time will tell if (and how many) patients will be harmed by the wide disclosure of their MHI throughout the ILHIE.



[1] First Update - Illinois HIE Strategic & Operational Plan, Office of Health Information Technology(May 8, 2012),

[2] Mental Health and Developmental Disabilities Confidentiality Act, 740 ILCS §110.

[3] Laurel Fleming & Wendy Rubas, Behavioral Health Legal Work Group, Recommendations of Behavioral Health Legal Work Group 3 (2012),

[4] Supra, at 4.

[5] Supra.

[6] 740 ILCS §110/5.

[7] Fleming, supra.

[8] Supra.

[9] Supra.

[10] Illinois Receives $600,000 to Connect Behavioral Health Community to Illinois Health Information Exchange, Illinois Office of Health Information Technology (Mar. 2, 2012),

[11] 740 ILCS §110/9.6.

[12] Id.