(305 ILCS 5/12-4.201)

Sec. 12-4.201. Data warehouse concerning medical and related services.

(a) The Department of Healthcare and Family Services may purchase services and materials associated with the costs of developing and implementing a data warehouse comprised of management and decision making information in regard to the liability associated with, and utilization of, medical and related services, out of moneys available for that purpose.

(b) The Department of Healthcare and Family Services shall perform all necessary administrative functions to expand its linearly-scalable data warehouse to encompass other healthcare data sources at both the Department of Human Services and the Department of Public Health. The Department of Healthcare and Family Services shall leverage the inherent capabilities of the data warehouse to accomplish this expansion with marginal additional technical administration. The purpose of this expansion is to allow for programmatic review and analysis including the interrelatedness among the various healthcare programs in order to ascertain effectiveness toward, and ultimate impact on, clients. Beginning July 1, 2005, the Department of Healthcare and Family Services (formerly Department of Public Aid) shall supply quarterly reports to the Commission on Government Forecasting and Accountability detailing progress toward this mandate.

(c) The Department of Healthcare and Family Services (HFS), the Illinois Department of Public Health, the Illinois Department of Human Services, and the Division of Specialized Care for Children, University of Illinois at Chicago, with necessary support from the Department of Central Management Services, shall integrate into the medical data warehouse individual record level data owned by one of these agencies that pertains to maternal and child health, including the following data sets:

(1) Vital Records as they relate to births, birth outcomes, and deaths.

(2) Adverse Pregnancy Outcomes Reporting System (APORS).

(3) Genetics/Newborn Screenings/SIDS.

(4) Cornerstone (WIC, FCM, Teen Parents, Immunization).

(5) HFS medical claims data.

(6) I-CARE.

(7) Children with Special Healthcare Needs Data.

By September 1, 2009, the departments of Healthcare and Family Services, Public Health, and Human Services and the Division of Specialized Care for Children shall jointly prepare a work plan for fully integrating these data sets into the medical data warehouse. The work plan shall provide an overall project design, including defining a mutually acceptable transfer format for each discrete data set, the data update frequency, and a single method of data transfer for each data set. By October 1, 2009, the Department of Public Health shall grant to the Department of Healthcare and Family Services complete access to all vital records data. The Department of Public Health shall prepare a report detailing that this task has been accomplished and submit this report to the Commission on Government Forecasting and Accountability by October 15, 2009. By March 1, 2010, the data sets shall be completely loaded into the medical data warehouse. By July 1, 2010, data from the various sources shall be processed so as to be compatible with other data in the medical data warehouse and available for analysis in an integrated manner.

With the cooperation of the other agencies, HFS shall submit status reports on the progress of these efforts to the Governor and the General Assembly no later than October 1, 2009 and April 1, 2010, with a final report due no later than November 1, 2010.

On an ongoing basis, the 4 agencies shall review the feasibility of adding data from additional sources to the warehouse. Such review may take into account the cost effectiveness of adding the data, the utility of adding data that is not available as identifiable individual record level data, the requirements related to adding data owned by another entity or not available in electronic form, whether sharing of the data is otherwise prohibited by law and the resources required and available for effecting the addition.

The departments shall use analysis of the data in the medical data warehouse to improve maternal and child health outcomes, and in particular improve birth outcomes, and to reduce racial health disparities in this area.

All access and use of the data shall be in compliance with all applicable federal and State laws, regulations, and mandates.

Notwithstanding anything in this Section, data incorporated into the data warehouse shall remain subject to the same provisions of law regarding confidentiality and use restrictions as they are subject to in the control of the contributing agency. The Department of Healthcare and Family Services shall develop measures to ensure that the interplay of the several data sets contributed to the data warehouse does not lead to the use or release of data from the data warehouse that would not otherwise be subject to use or release under State or federal law.

(Source: P.A. 95-331, eff. 8-21-07; 96-799, eff. 10-28-09; 96-1000, eff. 7-2-10.)